My name is Michael.

My partner Seth & I were living out our life long dream of owning a lodge and resort along the coast in Northern California.

We had just aquired it 6 months ago. Our new lives were perfect...

Then; On June 8th, 05 I got the call.

The FNA was positive for Squamous Cell Carcinoma. I had a large swollen node in my neck which was troubling more and more everyday over the 6 weeks that I had noticed it.

Now I've spent the last 13 days visiting 18 Dr's.

I had a CT/PET fusion done immediately.

That found 2 lymphs nodes about 3 x 2.8 cm and 1.5 x 2.35 cm (both right side) and the Right Tonsillar Pillar as the most likely primary. No other "hot spots" (thank God!).

I got a PCR ran on the cell block from the FNA. It came back positive for P53 gene defect. I am waiting on the HPV test on the FNA cell block.

I had surgery scheduled for tomorrow morning. A radical neck dissection (right side) and a radical tonsillectomy.

I just cancelled it.

I have been getting so much conflicting information.

Been to John Wayne Cancer Institute, Stanford, UCSF, UCLA, City of Hope and several others.

Almost without exception, every ENT/Surgeon recommended surgery as the 1st line of tx.

Two oncologists have stated that surgery should be a 2nd line, only if chemo/radiation fails.

One of them, from a CCC, states that he is getting excellent results with Erbitux and that I should hold off on any surgery until necessary.

He stated that once I have the MRND that the blood supply is comprimised and scarring inhibits medicine options.

I asked the surgeon about this, and he stated that since I am under 40 and have "..no risk factors.." then in his experience it must be "..a very agressive neoplasm which requires agressive treatment..." He further stated that post chemoradiotherapy sugery is much worse and has greater complications, blood loss, and it's more difficult to determine good tissue from bad.

I am hoping that the HPV comes back positive on the PCR so that will mean I "am" in a risk group even though I have never smoked or drink.

Now I'm second guessing my second guessing.

Today, I am getting a sore throat (slight) and my right ear has slight pain. Plus a little headache. And a slight pain when I yawn back where my right tonsill is. :-( So I am afraid I made the wrong decision to explore other options and lost valuable time.

Our business demands literally 24/7 attention and has already suffered irreparable harm from the few days I have spent "Dr shopping".

We are 3 or 4 hours from the nearest major city.

I don't know what to do!!

First off what's the staging? This is a relatively important piece of data. Secondly you muat have seen the NCCN Oncology Practice Guidelines that may be of help in the decision also. What surprises me is that it is usually a consensus opinion from a tumor board when one goes to a CCC, and yes, surgeons like to cut and oncologists like to poison and RO's like to burn. So you need to decide what tools in the arsenal you are going to use.

I'm guessing that you are maybe stage III, based on 2 lymph nodes involved and a tonsil primary. Many would advise you to hit it hard with everything they've got.

Your sore throat could be post nasal drip from allergies - it is that time of year.

Good for you to be your own advocate and explore your options - but once you select a treatment protocol - stick with it. Personally, I would be a little nervous with a chemo only (single treatment modality) for what you are describing - but I am not a doctor, only a patient (former that is) like you.

Plan on getting some help to run the lodge. I had radiation and chemo only and it was 1 1/2 years until I could function well again although others here have faired better.

I was Dx'd in November and Tx didn't start until January so don't panic about the time.

Welcome Michael, Sorry that this "thing" is in your life right now. You have a tough decision ahead and I want to be very cautious about my input as I am not a medical professional. If you can avoid surgery that would be a good thing. Even if you had surgery you would certainly be advised to have radiation and probably chemo anyway. If it were me I would have a long heart to heart talk with the Doc that suggests holding off on surgery. Find out what statistics he/she is relying on. You would be well advised to treat this with everything in the book if that offers the best statistical odds.

You do not want this thing to come back.

As Gary said you need to ask for and find help for your work. The surgery won't be so bad but radiation will make work a bear. Besides stress is contrary to healing and you need to off-load stress.

The question of stage probably can't be completely assessed yet. Node involvement plays an important role in staging and without a radical neck dissection they won't know how many nodes are truly involved. PET scans aren't accurate down to microscopic levels. Stage is important to you only to decide on treatment options. After that you get survivorship and the opposite. There is no such thing as 60% survival when it is the individual.

I recommend survivorship!

Take care.

my thoughts and prayers are with u at this stressful time please remain positive it is most importantat this stageand dont worry to much remember HEALTH BEFORE WEALTH.hugs your way take care best regards and prayers sent ur way
maz

Thanks all for your comments.

- I was told by several Dr's that I am Stage IV.

Since there are 2 nodes involved and they are large.

- Last night I had a total meltdown.

I was having nightmares about racing onto a freeway going the wrong direction.

I feel like that's what my life is now, just a matter of time before I have a head on collision.

It is truly inspiring to read sincere notes from so many wonderful people.

Basically, I have to decide which course to take.

Since I am Stage IV already, I am not sure that taking no course would be worse than the treatments the Drs are suggesting.

I present to the tumor board on Thursday at Stanford.

As far as getting help with the resort, we were just getting things off the ground and it doesn't justify the added personnel, not to mention my medical costs, support and care.

I'm afraid we maybe should sell, but that is like pulling the rug out from under our dreams, plus it leaves my partner in a horrible position, even if I pull out of this...

That's the thing. I get the feeling you are never "over this". From all I read it seems like once I have been diagnosed, I am just a ticking time bomb. Even IF we get it all using these centuries old technologies of barbaric surgery, lethal doses of poison, and cancer causing radiation...The odds of it returning are so high, it doesn't seem worth the fight.

What I read is that 60, 70 or 80% of us get it again. It's like waiting for the other shoe to drop.

On one hand, I think why put my partner, our business, and our families through this rollercoaster.

When I was first Dx'd I thought, "OK, whatever it takes I'm going to get through this..." But, that's just it, you never get "through this" do you?

I don't mean any disrespect to any of you here on the board. I respect the battles you've won and am not trying to diminish the importance of your strength.

It's just a realization for me, and I'm not sure if I want to take that journey.

Our resort was such a fantasy come true for both of us. We were only able to enjoy it 6 months. Just long enough to remodel and start to see the joys of owning it.

If we loose it, then we loose everything! Not only that, my parents would loose their home that we've had together with them for 10 years.

I know it seems petty to be worried about financial considerations, but frankly, it is reality.

Why should I wreak my partner's future (he's only 33) and my family's home and retirement future..?

What's the "best possible outcome"..? Surgery that removes every microscopic cancer cell. Come on...that'll never happen. Then what radiation? Then what, "I'm cancer free" if all goes perfectly perfect...then, for how long? At what cost? (not only financially, but costs in other ways too)

Mutilation? Dealing with the public while they're on vacation. They don't want to see a cancer patient serving them breakfast.

I'll never really be "cancer free" even if all goes well, right?

I mean, we aren't treating the deficiency that caused the cancer in the first place, just using old, barbaric treatments with the slim hope that it will keep me alive a short period longer.

Please give me any thoughts!

I

I'm sorry. I re-read my post and realize it is like poisoning this board.

Everyone here has hope and strong positive feelings.

I have really tried. I guess what was keeping me going was the "plan" of surgery first, then 2 months of chemo/radiation back home in SoCal, then a few months recouperating back at the resort so Seth could get back in thr grove after we stayed in SoCal with my family at our 2nd home while I was having the chemo/radiation (&/or Erbitux), etc. for those 2 months.

When that feel apart yesterday when I decided to postponne surgery, I guess reality has started to set in more.

It's not going to be "over" in 2 months..Who was I kidding ? (myself). It won't even be "over" in 6 months, or ever. Until it consumes me.

I am normally an upbeat, positive person. My first partner died of AIDS about 15 years ago. We were together over 5 years and I stayed by his side through it all. It was rough. The last 6 months were in the hospital. I was there every night, and drove 2 hours each way to work.

We fought hard. He eventually had no fight left in him.

I don't wish that experience on anyone, especially Seth, the one I care about more than anyone on earth.

Throughout it all I stayed positive and tried every imaginable treatment. We traveled to SF, LA and NY seeking treatments for his infections and diseases. I spoke to institutes in France, faxed reports to specialists all over the world. Tried experimental treatments (even some early gene therapy experiments), but in the end, none of it mattered.

This just seems so cruel. Forgive my rantings please. I am so desparate for some guidance.

Michael, Take a deep breath....We all have been exactly where you are now. I know it isn't easy in fact the worst time is where you are right now. I had the same nightmares same griping fears same oh-shit. Forget what you read. Those numbers are not for you. Many do survive and carry on a new and better life. Yes the "old life is gone. As for how you'll look if you go through treatments, click my user name and you'll see a picture of me after my surgery and radiation. While I am stuck with the looks I was born with, I don't think the treatments changed things too much.

Remaining positive is your biggest challenge. Your Doctors will take care of you. Choose a treatment, choose a doctor you like and don't look back.

Welcome Michael! Sorry you need to be here. I am self employed also & literally put my business in standby mode for 6 to 8 months. Keep level headed & try not to freak out! I know first hand about freaking out about the business impact. Let me emphasize, get your business affairs in order, get some help with the biz & focus on treatment & recovery & get this thing beat so you can get on with your life. The treatment will kick your ass & thats normal. I'm not trying to scare you, just realistic. Stay calm & focus on treatment & recovery. Let Seth help you. A comprehensive cancer center is definately your best bet. It sounds like you're doing your homework. As others have said, hit it hard & all at once. You do not want it to come back. I opted for all the treatments available & have no regrets. It sounds like you already know how to embrace life & go for it, just carry it on through this time. Keep yer chin up! Erik

A neck dissection isn't that noticeable, especially if they only take the node chains and no muscle is involved in the surgery. So do not be thinking using the term mutilation. Will you look different

Michael, get it together and get treatment. This is a fight you can win. Don't overthink it, just get treatment.

I had stage IV with node involvement, had the surgery and the day after I got home was out pulling up ivy, a hard job that I was completely up to. When I finished rad and chemo, I went fishing. Yes, I was burned and bald, but the energy came back, the burns healed, and the hair grew. That was all three years ago and I am going full speed ahead, and you can too. I don't work, but all through treatment I did housekeeping and laundry and cooking. It took me a little longer, but I could do it. Do not think you will necessarily be laid so low you will be unable to function.

This is just an unfortunate bump in your road and to see it as going over a cliff is not being logical. Many, many people beat this awful disease, and it only takes a few months to do it. Not a bad tradeoff for many more years.

I am of the "throw everything at it the first time" school of thought, because that ups the chances it will not return. Your 60%, 70% and 80% recurrence numbers are all wrong. Even the generally accepted 50% five year survival is not good without the explanation that the numbers include people who refuse treatment, refuse to complete treatment, have other serious disease such as heart and liver, and those who continue to drink and smoke during and after treatment. Take those folks out, and the survival percentage goes way, way up. Given your young age and expected lifespan, you have everything to gain.

I know exactly how scary it is at the beginning, but once you begin treatment, things will improve mentally because you will know you are fighting, not just sitting back and wishing things were different. The only way things will improve is if you get on board a treatment plan.

And listen to Brian. There is no multilation involved. I wear my hair up so my neck is totaly exposed and not one person has ever noticed anything strange, not even children who say what they think.

Bottom line, you can do this and we will help.

Joanna, tough as nails, but means well

Thanks Joanna!

I am stuggling every minute with the decisions.

And they are just begining. Hundreds more to follow.

I guess the famous quote that more wrong decisions are made by indecision than by wrong decisions is true.

I will make a FINAL choice regarding surgery tomorrow at the Stanford tumor board.

It's so frustrating to get 25 different viewpoints from 16 different Dr's.

Just shows you how complex this disease is and how little they have learned about it.

I agree that once I have a plan and begin action I think I will be better....

I am gald to hear you are well, and appreciate the clarification on the statistics.

Michael,
Do not make any rash decisions! My shrink always told me "When in stress, make only one major decision at a time. And make no radical life changes." You are in acute stress. Now is not the time to decide about your business. Most of the what-ifs won't happen. You'll have to make some changes and modifications but, most likely, you'll be able to keep your business. Family and friends will help if you let them.
And even though you look swollen and odd after the neck resection, you'll go back to almost normal. Honestly. No one can tell I had mine and because they took all the nodes out of my neck and tightened up that skin, I actually look much younger than my age. I'll email you a picture.
It's completely understandable why this would freak you so. Your past experience with your dying partner. That was a terrible experience. Please consider some therapy time to help get perspective. The hospitals and county often have great programs. It saved my sanity and got me out of panic-mode.
I did surgery first, rad after, and apparently am still free in the primary site 12 years later. But mine was more advanced when they found it so they had to be aggressive. Take deep breaths, stare at the ocean and let your inner calmness take over. And make no radical changes to your lifestyle! Yet. Ali Mae

Michael,

Here's one more voice telling you not to panic or assume the worst. I also anticipated "mutilation" when I first heard my doctors describe the surgery they were going to perform on my tongue and neck, but after the incisions healed and the swelling went down, the effects became barely noticeable. I understand your concerns about trying to deal with customers during your treatment -- I'm one of those here who continued to work (albeit a reduced schedule) during my radiation, and I was initially quite self-conscious about seeing clients then. However, they were very understanding and supportive and did not make me feel like a freak.

Don't dwell on statistics -- as some of the others have said, they can be misleading and misinterpreted and they don't serve a useful purpose when it comes to your own recovery. You have many supporters here who want to help you get through this, so come here as often as you need for advice and information.

I've had a long list of extraordinarily good experiences in the past 16 years, many of them traceable in one way or another to what I went through with oral cancer. As I've said before, if someone told me I could go back in time and relive my life without that cancer experience, I'd turn them down, because I wouldn't want to risk missing out on those "good things".

Please stay in touch and let us know how you're doing.

Cathy

Hi Michael
we're all lab rats in a sense lol- that's the nature of the beast! All treatment possibilities are tailored to the individual. Listen closely to what Brian had to tell you (and not only about just the mrnd). I have met Brian and many others with neck disections and it's not mutilation (especially the mrnd compared to the rnd). You really have to look for it.

I was touched by the eloquence at the way you stated your fear and it's not poisoning the board, it brings many of us back to a place where you are right now and renews our gratitude that we have moved beyond it.

I had a choice of going to Stanford or UCSF and I chose the later because I was going to get IMRT and the RO out there is the top IMRT doc in the country. Otherwise Stanford would have been my first choice.

I am an advanced stage cancer survivor as well and life has exceeded my expectations today. Forget the stats - they will only drive you crazy. They don't take into consideration health habits, age, etc.

Being younger actually works against you a little. Cancers in younger people tend to be more aggressive so if it were me, I would hit it with everything they've got. You CAN get though this, get your life back and you might even get some unexpected surprises along the way (and I mean that in the most positive way).

Don't let your imagination run wild with this (there are actually only a dozen or less decisions to be made - doctors?, facility?, teeth - pull yes or no?, surgery?, chemo?, type?)- it's all too easy to do. It's all about risk/benefit - these are the questions that must be answered to your complete satisfaction. You need to have confidence in your team. Ask for anti-anxiety meds if you need them.

Take it one day at a time. Only God owns the future. And we are here for you.

Hey all!

WOW!! Do I feel better...I know I must sound manic depressive, but waking up to a beautiful sunny morning and reading all your eloquent thoughts really helped get me out of my pitty party.

I think it hit me extra hard since I had just decided yesterday to hold off on the MRND until I meet with the tumor board (tomorrow @ Stanford).

I guess part of me was all physch'd up for the major surgery, plus I felt a sense of control for the first time since the dx.

Then, when I changed my mind last minute yesterday I think it made me feel like maybe I was just delaying the inevitable, or staying in denial, or procrastinating, or something.

My best friend (who just nearly died of AIDS in the hospital for 7 weeks; he's fine now) and I have a great saying...Years ago when he was trying to find a good therapist for some emotional issues he had, he kept changing around from one to another...We used to say that he just "changed Drs until he found one that told him what he wanted to hear". I suppose part of me was afraid I was playing that same game, with a much more dangerous ante.

But, whether it's denial or mania, I feel like I am doing the right thing to delay tx for a couple more days to make the most informed decision.

I still may have the MRND (especially if the tumor board recommends it), but not likely by the same Dr who has yet to return my calls and emails, and still has never met me..!

I may also travel to MD Anderson or Sloan to get a final opinion, but whatever I do, it will be fast.

If it's surgery, or chemo/radiation, I'll have it done or started within 7 to 10 days.

Thank you again, each one of you!

I REALLY appreciate the unconditional love and support I have found on this board, and am looking forward to the day, years from now when I am cancer free and able to return the favor to some other person in my shoes.

Warmly,

Michael

Hello Michael,

Glad you found us but sorry you had to. Heed the advice posted above. "Who better to ask than one who has traveled the path ahead of you"

I was a stage 4 right tonsil patiant and will be two years out from dx next month. I had met to the lungs last June and six months later after chemo my lungs were clear! You will get past the pity part rather soon. You will need the energy to fight this diaease.
You will find many survivors on this forum. It may be a rocky road but so many of us have traveled it and are around to talk about it. You can to!!!
I hope your decision is made soon and you stick by it. Don't second guess yourself. Time to put on the boxing gloves!!!

All My Best, Danny Boy

Daniel:

How do they find it early enough when it returned to the same site?

Also, can I ask what risk factors you had for it in the first place?

Did you have chemo the first time around?

Just curious...THANKS!!!!

Hello Michael

I also had stage 4, right tonsil remnant with extensive spread to the lymph - four in all. I chose a radical neck dissection plus radiation because I thought, from a novice's point of view, that if the large tumours were surgically removed the radiation could work on what was left. Also there would be less likelihood of cells spreading from the tumours if they weren't there! Also, I'm often not good with drugs.

I was amazed at how well the dissection healed. It hasn't affected my facial nerve at all.

When I was first diagnosed I was stunned to hear my doctor mention the word 'cure'. I hadn't considered it. Two years out from treatment I am doing well, back to my normal life and work. I too am self-employed. I wasn't able to work during treatment but told my clients what was happening. They were very supportive and had work for me when I was well enough.

I have great empathy for how you are feeling, Michael. Listen to what your docs have to say, think about it quietly then follow your gut feelings.

I'll be thinking of you and send you love and light from Helen

Michael,

My prayers will be with you tomorrow and every day until you get through this.

You have received the best advice around from the people here that care about each other and now you.

My suggestion is to print out the above and keep rereading it when things get you down.

Keep us posted about your decisions and as often as you like or need to, write. We are here.

Good luck tomorrow.

Jerry

Seems like the darn tonsils are common for this! Why didn't my dentist catch this a couple months ago? It was AFTER I had the swollen node after all.

Oh well. Water under the bridge I suppose. I plan on pointing him to this site for a refresher course on early dx.

You guys have all been awesome here.

I want to recap a quick update below and ask for any hints, info or background that anyone thinks I should include in my Tumor Board presentation tomorrow am.

1) Stage and nodal involvement, CT/PET scans, all pathology reports, etc.
2) Last week or so have had "pain" (a #2 on the 1 to 10 scale) on right side in throat. (sore throat)
3) Slight (2, sometimes 2.5) pain / sensation in Right ear.
4) painless "sore" on right rear side of tongue noticed 2.5 weeks ago, basically ignored by 4 or 5 ENT's
5) Background that FNA's caused lymph nodes to swell at least 25% to their current size.
6) Statement from most senior ENT I saw that persons of a younger age without risk factors has a more agressive neoplasm and requires more agressive tx.
7) Slight occassional ringing in right ear (30 seconds a couple times a day for the last two or three days)
8) Likely to be HPV positive for tumor. (waiting on PCR results from cell block on FNA)
9) Outline of the 2 treatment paths I am considering:

A) MRND following or simultaneous to Radical Tonsilectomy; then radiation (and possible chemo and/or Erbitux)

B) Chemo and/or Erbitux with Radiation, (possible biopsy of R tonsil first), and/or possible radical tonsilectomy. Then, possible MRND if needed post chemo/radiation.

Any of your suggestions are appreciated.

Hi Michael,
I wanted to reply to you earlier today but simply did not have the time. I think one of your problems is that you have seen so many doctors at so many facilties that your are functioning on information overload. To not do anything is absolutely foolish and no dr is even suggesting it.

I am glad you have come out of the the 'pity party'. Don't think that is where Seth wants you and if you think about it, if the shoe were on the other foot, you wouldn't want that either. You guys got a great lodge to run to now is time to get you back to healthy and on with your lives.

I would suggest, unless RO insists otherwise, to take your surgeons advice and have neck dissection and tonsil removed, followed by rads. I have had two neck dissections and there are almost no discernable scars. The trick is to have the best plastics guy available. Operating on eradiated tissue is bad especially recently eradiated tissue. I'm not medical, but I would be surprised if you still didn't need surgery even after radiation and chemo so would suggest you follow surgeons first suggestion.

I have always opted for surgery.I want this thing out of my body ASAP before it metastisis to someplace else. So if it were me, I'd be in recovery right now. Neck disections are not that bad, especially if they don't have to cut any muscle. I've had two and stillwear dresses with shoestring straps so your should not have to worry about disfiguration from neck dissection.
Radiation is the worst part of the treatment and may knock you on your back for a while. It also has some nasty permanent side effects like lack of saliva.

I think you need to pick the treatment center with the doctors you most trust ASAP rather than looking at several more options. If it were me, I'd get the surgery yesterday and move on to radiation in 6-8 weeks.

As to your question will they get it all the first time, who knows. That is certainly no reason to not not have treatment. As to worrying about if you will have a reoccurence, I see no reason to dwell on it. As Brian so aptly pointed out, we can get run over by a truck just as easily. If you will read my signature, you will find that I did indeed have a new cancer after 4 years of being cancer free. Not a reason to give up. Had surgery and back on track 8 weeks later.

We are survivors here and will help you through this. Get your treatment started NOW and stop looking for the miracle cure. Unfortunately at this point it still does not exist. You got a lodge to run and Seth is depending on you, so let's get you better ASAP.

Take care,
Eileen

I'm sure you're right about the uncecessary delays.

Now I feel stupid for cancelling today's surgery.

I had direct instructions from a family friend who is a Duke trained oncologist to avoid surgery at all costs. He said the scarring and blood vessel destruction will make Erbitux (he alledges my best option for survival) not function. He's been practicing for 24 years and I took his advice.

Thanks for the feedback and kind words.

I showed your note to Seth and he agrees with you. :-)

- Michael

I'll let you know what the tumor board say's tomorrow.

Also I was wondering about the other implications of having the MRND now.

If we can rid me of the cancer now, doesn't it make better sense to save that in case of a relapse? Also, the nodes themselves might prove useful in dx. any future return?
(I guess next time (if it returns) I want to catch it early...BEFORE any nodes are involved!)

Don't feel silly for cancelling, Michael. YOU are in charge of your cancer treatment and must feel confident with your decisions. In my case, the more info I had, the lesser the fear I felt. You're doing well - I believe you have a better grasp on the detail than I did at the beginning of my journey. Love from Helen

michaelii
i am 2 and a half years out of treatment, yes we all have battles we must face but then again who dosent,i finished treatment in dec of 2002 and went back to work the first week in feb, with me it was my will to get back on my feet and the trust i have in the lord that got me thur it all and something that really got me one night at the dirt track races a elderly man can up and set down by me and asked me what kind of cancer i had i told him and he said well if it is of any help he said he had went thur the very same thing in the late sixties he was healthy and very much alive, i questioned him about several things and one of them was would i ever get over all that was done to me his reply was why would you not he explained to me that he had battles in the first few months but it all got better for him, and with the lords help every one who goes thur it will get better in there time, chin up and chest out it really does get alot better but you have to belive in the lord and belive in yourself, may god bless you and guide you thur it all

Listen to what your gut tells you and find a team that you have confidence in. Erbitux is still a relatively experimental drug, especially for head & neck cancers. According to the manufacturer, it is only indicated for metestatic colorectal cancer at this time. They have recently completed a phase III clinical trial for efficacy for head & neck application on 424 patients (in conjunction with radiation). An additional 104 with Erbitux alone. They are submitting an application to the FDA to add the H&N indications for use.

From AP, June 8, 2005 "He estimates ImClone will be able to sell Erbitux for head and neck cancer in the United States in the second half of next year, which will add $18 million in revenue in 2006 and $59 million in 2007. Reddoch estimates that Erbitux sales will grow 47 percent next year while they will accelerate 41 percent in 2005. (Maybe Martha dumped her stock too soon)

In the latest announcement, ImClone said data showed that when Erbitux is used in combination with radiation therapy, it prevents the spread of head and neck cancer more effectively than radiation therapy alone."

It is being treated as an adjunct to radiation and the outcome data would appear similar to Cisplatin.

Historically, head & neck cancers have never responded well to chemotherapy alone and are typically used as as adjunctive treatment.

The single treatment modality of Erbitux has only been tested on 103 advanced SCCHN patients. No other data was offered.

See: http://www.genengnews.com/news/bnitem.aspx?name=554150XSL_NEWSML_TO_NEWSML_WEB.xml

Erbitux shows great promise, but so did Iressa (see http://www.medicalnewstoday.com/medicalnews.php?newsid=26352 ) which has been pulled for general use for not meeting the FDA's efficacy expectations (the placebo performed better). Personally I think the the future of cancer treatment lies in genetic engineering, such as monoclonal antibodies (which is what Erbitux is). Are they really there yet? - do your homework and ask the tough questions to the oncologists.

I had radiation and chemo and I am 27 months cancer free and have most of my salivary function back. It was advanced stage and I had no surgery. But the surgery I could have had would have been very extensive - 14 hrs on the table and serious quality of life issues later. My entire team was unanimous that my outcome would be slightly better with the treatment modality I went with. If they told me the surgery would make an improvement in my survival odds - I would have gotten it in a New York minute.

Maybe you're a candidate for Proton Beam Therapy

See: http://www.llu.edu/proton/patient/sites.html

I guess I just have this inner fear of delaying treamment another week.

I feel my "symptoms" getting a tiny bit worse everyday, slight sore throat, ear ache, etc.

Sometime my low self-esteem takes hold of the paranoia and zoom...I have a meltdown.

When everyone asked me a week and a half ago, "well, you feel ok, don't you" I honestly responded, "Yup, no symptoms at all other than the FNA results"...now I am getting "symptoms" and am worried I made the wrong decision.

But, either way, can't go back in time, if I could I would go much futher than that! Back to when I was barely Stage I, and have it dealt with them.

So, I'll present to the board today, and let you all know their recommendations.

Thank you all!

Hi Michael,
My name is Minnie and I was diagnosed with Stage IV cancer in my left lower jaw in April of 1003. I had surgery to remove that lower jaw and replace the jaw bone with a bone from my lower left leg. I also had the neck dissection along with radiation treatment. Two years later my life is very, very good. It's not the same and it never will be but I still thank God every day that I am here. My old life and my new life are equal but different, if that makes any sense to you. The process of grieving and saying goodbye to my old life was very difficult at times but I worked my way through it and just in the last month I feel like I have exited that long tunnel!!
I am in agreement with everything Eileen wrote to you. She has given you excellent advice.
Please know that while this is the hardest challenge you will ever face, winning this challenge will bring you the biggest rewards you will get in life. And LIFE is the keyword here. It is amazing what the human spirt can adapt to, what we can handle and cope with physically. You will learn about yourself in the next few months then most people learn about themselves in a lifetime.
Minnie

Michael,

Please keep us posted. We have all been in your shoes...inundated with options and having to figure out which is the best path. Check out the book "From this moment on", by Arlene Cotter. It's a book for people recently diagnosed with cancer and helped me breathe and stay focused and calm. It's not a book on cancer....it's a "help you deal with your feelings" book.

One thing, I just wanted you to know, I also had ear pain prior to surgery. It was gone immediately once my tumor was removed. Not trying to sway you towards surgery, just saying it's a good possibility the ear pain subsides as treatment progresses.

Best wishes,
Jennifer

Michael,

In my opinion, you do not want to save anything for a recurrence. One of the major ways this cancer spreads is through lymph nodes. If they are not there, you have made it harder for the cancer to spread. You do not want to save radiation therapy for a recurrence -- it is the very treatment that may prevent a recurrence in the first place. Of course there are no guarantees, no matter how much treatment we have had, we are all at risk for recurrence, but you are much better off being aggressive right from the start. There is no question that treatment is difficult but we have all survived it and you can too.

Good luck.

Barb

Michaelii, there are tremendous words of wisdom and many good vibes being sent to you and Seth. Just be open to them. And some of us would really like to visit a lodge in Northern Calif., so get going guy, and start getting well. Amy

It is hard to express the love and compassion I have for all of you already.

Thank you sincerely for every kind word and expression of hope.

Today my Parents went to Stanford with Seth and I to present to the tumor board.

We learned nothing new.

They echo'd the choices and said there is no right answer.

Based on this I have scheduled the surgery for Weds (again) regretting that I have wasted yet another week.

In the meantime I am reviewing the particulars with MD Anderson in case they have a firm opinion against the surgery.

If not, then I plan to move forward to save precious time, and then seek radiation (& possibly chemo, Erbitux, whatever) elsewhere since Stanford is 4 hours away it really makes no sense to go there. Texas, NY, etc are the same by plane, and I am not convinced they are the best for post-surgical care.

I am worried about my family and Seth. Today there was a TON of tension. Everyone has been trying to be on their best behavior but I can feel it unraveling a little on the fringe.

It creates stress for me that I know hurts my prognosis, but at the same time I want to minimize everyone else's pain.

This may sound egocentric, but I have always been sort of the glue of the family. Everyone looks to me for guidance, direction and leadership on almost every issue. I am the type that's always trying to keep harmony.

It's a role I have always enjoyed. Now, I feel like I'm stepping down and things are kind of crazy.

Seth is having an especially hard time and we haven't even started the REAL BATTLE yet!

He is naturally annoyed by my parent's sudden omnipresence, my lack of focus on other things like business, and my in ability to fuction at my normal 110% level.

Are there any suggestions for him? I am really worried about how his is taking all of this. I am going to need him to be strong enough for both us to get through this.

If anyone want's his email address, send me a private mssg. I think if he started participating on this forum it would be a valuable resource.

As always, your thoughts, ideas, comments and questions are welcome!

Michael,

I think it would be helpful for Seth to familiarize himself with this site. There are many caregivers who post here regularly and can offer a great deal of advice and support. Without a doubt, being a caregiver in this situation can be very stressful and frustrating, and there are resources here that can help to alleviate the pressure. I would also recommend that some of your other family members log on here to get a fuller understanding of this disease and the treatment options.

I have to agree wholeheartedly with Barb's post above where she advises against "saving" something for a recurrence. My cancer team pushed to do everything possible on the first go-around, as my tumor was showing signs of aggressiveness. The surgeon removed many lymph nodes during the neck dissection/partial glossectomy (fortunately, biopsies of the nodes proved 100% negative for cancer), and I then had 7 weeks of radiation followed by brachytherapy. None of my doctors wanted to be in the position down the road of knowing that they could've/should've doing something sooner. After 16 years without a recurrence, I certainly can't second-guess their decisions.

Cathy

Dear Michael

Your love for Seth shines through in your posts. My view is that acceptance is the key for coping. Not everyone can come to that stage quickly but when it happens we can move forward.

I gather from this site that often the cancer journey is harder for the caregiver than the patient. Many caregivers here will offer support to Seth if he wishes.

I'll be thinking of you next week and send good wishes as you begin your treatment.

Love and light from Helen

Michaelii,
I think you will find this web site very helpful.I know I have.My boyfriend of 20 years Jerry was Dx in late May.He has a pot and a peg.He had his 2nd rad tx today.He will start chemo in July.He lost his job just as we were finding out about the cancer, then my mother ( who has vascular dementia)came live with us.The last few weeks has been fun and games.Jerry has a positive attitude and refuses to worry.Thats left uo to me.I myself am disabled( LPN for 17 years)I have MS.I have my moments of depression but I get over it.I take one day at a time and think positive.What else can I do ? Sit down and cry hell I dont have time.I do have a close friend whom I talk with daily and she helps alot by just listening.I log onto this site every few days and learn something everytime.We know what to expect and we are ready for it.HANG IN THERE

Karen:

I am so sorry to hear about Jerry's diagnosis.

Please keep us all posted on the progress.

LPN? What does that stand for? Is your MS relapseing?

And your Mom? How is vascular dementia different than dementia? Does it affect her lungs?

Sorry for the questions. I send you my best wishes for health to all of you!

- Michael

Michael, in our town the hospital (small town, we have just one) has a support group for care givers. You might want to have Seth look into that. Having been the care give twice before being the patient, I know it can at times seem almost overwhelming. I had a circle of friends who served as my support group, but even better is a gathering of people going through the same thing.

I am very glad you have opted for the surgery. Don't worry about the small delay. This stuff is nasty, but not that fast.

I cannot know the dynamics of your family situation, but it might help if you all sat down and you told them that for the next few months, you are going to need to concentrate on yourself, but that when you are through treatment, you can resume your former role in the family. Or something like that, just so they know the change for each of them is only temporary. They might also be very scared by the word "cancer" and not be thinking positively about your very good chances of survival. In case they have come upon the same statistics you earlier quoted, you might explain how that is not a good indicator of how you will do.

One guarantee, however, is that once you have definitely committed to a course of action, you will feel much better emotionally.

Hi Michael, I am not in a position to offer any information about the cancer, but I want to let you know that I hear your fear and confusion. I am sitting here on the other side of the planet and I am sending you as much good energy as I can, lots of prayers and strength. These people on this forum are amazing, and a Godsend. You have come so far through life, and gained so much, keep up the fight ....

Hello Michael,

Glad you now have a treatment plan. The battle begins!!! There is so much good advice posted above I just wanted you to know how many of us are pulling for you. So many of us were at the same stage you are now. We got through the treatment and you will to. Good luck on Wednesday, I'll be thinking of you and hoping for clean margins and a speedy recovery. Keep us posted and ask any question you can think of. Someone with similer treatment will respond.
Also measure your progress in weeks not days.
There will be light at the end of the tunnel, It may take you awhile to get there but you will.


Danny Boy

One of our neighbors is a breast cancer survivor who recently completed her chemo.

She looks 10 years older than her age, moves real slowly and has trouble focusing.

Last month she was really in pain from peripheral neuropathy.

Despite these struggles, she took time out to come by and give me a hug and tell me it will all be ok.

We cried and talked and complained about the "bad luck" we got dealt.

It was nurturing.

Today. my sore throat is getting worse, headache, and earache too. Guess the tonsil tumor is getting agressive in there!!

Now my chest pain hass moved to right back side of my chest and I'm scared to death it's met'zd to my lungs.

Really wishing I'd had the surgery this last Weds. now. :-(

Oh, well...Maybe I needed to have this pain to appreciate the pain from the srugery more (LOL!)

The person who worries me most is Seth.

He is in denial still I think. I don't want to bring him down since we both need to really focus on keeping our business going, and I have been almost no help lately.

I feel paralized by this whole thing!

Usually he can count on me to handle every thing from big issues to the most minute detail. I know he is frustrated and that sometimes makes me upset because I think he isn't taking this seriously enough.

I know how damaging stress is when one has cancer, so I am really trying to ignore it, which upsets him more :-)

Seems petty in the scheme of things currently, but I KNOW I am going to need him more than ever before to have any hope of pulling through this.

Does anyone have any books, tapes, or other resources they could recommend that might help him deal with this?

I feel measurably better being able to discuss on this forum, and am trying to convince him to become involved too.

- Hugs to everyone...

Michael

Michael, Lots of people are pulling for you. Please try to put your caregiver role on hold for a while. You really do need to focus your energies on getting well. I have sent you a private message addressed to Seth. Amy

Throat pain this morning, like a strep throat feeling.. (maybe a 2.5 or 3 on the 1 to 10 scale) has me worried.

Hot green decaf tea helps and I've been drinking lots of water.

I read somewhere about water and oral cancers having some link??? Was I hallucinating?

Anyway, I read about Dr. Masaru Emoto's water crystal experiments.

http://www.hado.net/water_crystals2.html

Sounds crazy, but I am writting CANCER CURE on each bottle of water I drink and visualize it killing the cancer as I feel it enter my body.

I guess "hope" has overpowered my normal "skeptism".

I have a quick question too: The surgery nurse told me not to take aspirin 5 to 7 days before the surgery (obviously because of the blood thinning effects), and it's for this reason I have stopped taking Omega 3 suppliments...But, there was another anti-pain med she told me not to take and I can't recall if it was Tylenol or Ibuprofren..? I need to take 'something' for the throat pain, occassional headaches and earache. Any thoughts?

Michael,

You can take tylenol , but not ibuprophen.

Good luck Wed.

Jerry

Michael
I just wanted to add my good wishes for your surgery Wednesday. For now..I know it is hard but stop worrying about Seth and concentrate on Michael.
He loves you and he will be there when you need him, its amazing what a person can do when they have to.
Trust me I know!
Take Care
Marica

You're right!

I finally got Seth to register, his screen name is Seth.

Hopefully he can find as much solace and hope in the board as I have.

- Michael

Seth, Welcome aboard. I think you will be glad to know these people, they are a special group. Amy

Michael,
My brother was diagnosed last year. In his case the doctors said surgery was not an option and they began radiation and chemo. Unfortunetly he was not at a comprehensive cancer treatment center. This is of utmost importance no matter how far or how much inconvience it imposses. Once we got him to one they scheduled surgery, but unfortanetly the cancer has returned. Anyway, my point is...If he had had surgery FIRST they could have followed up with chemo and radiation to kill any remaining cells. That was not an option for David since he had already completed his lifetime max of radiation. I say get in there and get every bit of that vile cancer out as soon as you can. Don't give it a chance to spread - because it will. It's like a weed taking over a garden. From what I've read and experienced, oral cancer is especially aggressive in young patients. As for disfigurment, please don't waste your time worring on that - you have plenty of other worries on your plate. My brother had is tongue, upper and lower jaw, floor of his mouth and part of his throat removed and he looked great after healing. There was only a scar behind his ear and along his neck that was not noticable and a tiny scar up his chin through the bottom of his lip and since he has always had a dimple there anyway, it was harldy noticiable. As for Seth, the best thing you can do for him is be strong. My brother has faced this disease with an unbelieveable amount of courage - after a year of treatment (and I'm talking some horrible experiences with chemo) he has never uttered a complaint. He has remained positive and even now, facing the final days of his life, continues to live EVERY moment, wanting to go and do things to stay busy. His strength is what has allowed me to remain strong. If he can handle this, I can as well. Your strength will give your parents and partner the strength they need to be there for you. Yes, there will be days of endless crying, days of high hopes, and many days in between. While my brother has never cried or waivered in front of us, I know he has with his wife. His little girl, who just turned five, drew a picture the other day and said, "This is my daddy crying." Although the words broke my heart, I was glad to know that he has released some of his grief through tears. You can be strong and cry, strong and be angry, strong and yet helpless. All of these emotions will come. This will be one of the hardest roads of your life. Take a deep breath, begin treatment and live each day. Your strength will make those around you strong and their strength will make you strong.
You will be in my thoughts,
Tonya

What a lovely and touching post, Tonya.

Michael, My prayers and best wishes are with you as you begin your treatment through surgery. I will especially be thinking of you Wednesday. I do hope Seth comes here and finds support in his role as caregiver but I also need to say, from personal experience, that your energy can't be spent worrying about how he will get through it because you will eed to be taking care of yourself too much.

As a cancer survivor friend of mine told me when I was recently diagnosed and worrying about how my husband would cope, if there ever was a time to make it all about you, not him, this is the time. Seth will find his own way through and it may not be the way you would like to see him take but you have yourself to take care of first, here, and you can't control how he gets through it.

My husband, for example, did register for and has visited this site, but only once way back at the point when I had first found it and was pestering him to come here because it was obvious he was struggling with some of the caretaker role issues. There are also two caretaker support groups in town he could have tried to join and though he amde a lot of noise about going to a meeting he never has. As things have moved along, I have found that I have to actually defend myself against some of his stuff related to what is happening at times, because he doesn't want to look too closely at how this is affecting him (he prefers to beleive he can sail peacefully throughthis without being affected at all, ven when it is obvious he is)and so things like frustration and anger tend to come out sideways sometimes through inappropriate reactions to my treatment or innappropriate demands on me. Thank God I found a cancer therpist who has also done some couples counseling with us a couple of times when things have gotten bad in the past couple of months because this has been a real challenge for our relationship (and we had a great relationship with very low levels of conflict before this).

I believe, though, that it will deepen our relationship eventually but only because I now see some things we need to work on that I didn't see before when life was easy. On the other hand, because my main energy has gone to coping with, and now recovering from, my treatments, very often I've had to say to myself "Oh. I never saw that in him before" and just move on as best as I can AROUND it. Well, learning to do that may be a skill I needed to learn too.

Anyway, you and Michael and the rest of your family are in my prayers. This is somehting that will shake up the world of everyone who loves you too, no question, but just rememer you cannot necessarilly help them through it all at times. You just need to take care of yourself, as Tonya's lovely post about her brother indicates he is doing right through his last days.

nelie

Much like Nelie's experience, my husband too, has taken the caretaker issue in his own way. He has been a real peach about driving me to appointments, but I think caretaker's in general experience "burnout"

Sometimes I think he just doesn't get the fact that it's going to take some time for me to get back to "normal" and normal might not ever be exactly the same again.

Cancer is not only a freaky experience for those of us going through it, but shakes up quite a few people that connect to us. As soon as I shared my diagnosis with my only close friend in town, she flat out DISAPPEARED, either afraid she'd be asked to do something or just unwilling to watch someone she knew go through treatment.

My own parents pizzled out. Long story there that I won't get into, but basically I had to stop communicating with them entirely.

You will have to be the strong one Michael and there will be times where it gets frustrating dealing with people. Take it easy and take it slow, you will get through it.

In my own case, I've made it a point to be a wee bit selfish. After years of being the caretaker of the family and trying to please everyone, I view this particular time in my life to consider what's best for me. It was probably high time I made myself a priority.

Jen

Hi Michael, as you have figured, a life-changing crisis like this can affect the dynamics of established relationships. Especially when the partner afflicted has always been the one who was 'the strong one'. Adjusting takes time, and counselling can help. Grief takes so many forms, there is your grief for the loss of your health and lifestyle, there is grief for the existing relationship dynamics .... typical responses are part of normal grief process, denial (this can't be/should not be) happening, so I will carry on as if it isn't and it will all go away ..... anger .... etc ... until a person is able to come to terms with the new situation and get on with what needs to be done. This is not a simple linear process but a rollercoaster, with swings from one stage to another and ups and downs. Is that as clear as mud? Straight up, your relationship with Seth seems to be experiencing a normal response to a crisis situation that demands a change in dynamics. There are counsellors out there trained to deal with it, and of course these guys on this forum. Hang in there, true love and rocky roads do seem to go together. You'll never know just how strong the bonds between you are until they have been tested. Remember, you need to look after you, for both of you. On a personal note, I am a divorced and now sole parent of five children (aged 8 to 20) and I came to accept years ago that I am the lynchpin of the family. Even though my decisions may, and often do! seem selfish to the children, I have accepted that I need to stay healthy, strong and sane for their sakes not just mine. I just hope that as they grow they will appreciate that one day. Best wishes and take care ... oceanangel

Michael & Seth,

Just want you both to know that I am here for either if you if you need anything. Like everyone keeps saying its a rough road but things will get better. I posted every question my family had on this board and always got very sound and good advice and there were many times when people on this website helped me sleep at night while my mom was in treatment.

Please know that I will be praying for you on Wednesday and kick that stupid cancer in the butt!

Hugs,
Dani

Thanks Dani! Congrats on the clean scans for your Mom!

I just got the results back from the cell block.

It was NEGATIVE for HPV (P16) using Immunohistochemistry testing on the tissues removed in the FNA from 06-08.

This is terrible news for me, since I was hoping all along it explained the source of the cancer and also increased my odds of survival.

Now I feel so defeated and I haven't even begun to fight.

In despiration, I am moving forward with the MRND and Radical Tonsillectomy tomorrow at Stanford.

This is despite several conflictory opionions, even as late as this morning from various Drs stating that the Erbitux is my best 1st line of attack and that surgery impairs it's ability to rach affected areas.

Please keep me in your prayers. It is scheduled to being around 1:30 PM.

A) You have NOT been defeated! Period.

B) As you say, the battle begins now. First and foremost attack it as if victory is a foregone conclusion and the battle is an inconvenient, banal non-event.

C) Have faith in the Drs. you have chosen. Medical science is as much art as it is science. That is what a Nobel Laureate from the Howard Hughes Medical Institute once told me.

D) You will do great! You have lots of spirit, just focus it!

All my best.

Tim

I have no doubt that we will be hearing about you or even from you after you have successfully made it through surgery.

Probably all of us have been where you are at. That horrible panicky state where you are still in shock from the diagnosis and before treatment begins. Speaking for myself, it was the scariest fricking period in my entire life. Perhaps foolishly, though, I still haven't made out my last will and testament.

More people than you know are pulling for you.

Jen

Thank you Jan and Tim.

I can't express how much everyone here means to me.

OK, here's my tough love voice as a Mom of 2 grown kids and a small grandson plus StepMom to 3 way grown kids and StepGranny to their 4 pretty big kids: YOU HAVE JUST BEGUN TO FIGHT, YOU ARE YOUNG, STRONG, SMART & LOVED. "Knowing" what contributed to the cancer you have does NOT have much to do with beating it. Your attitude DOES. You've done your homework, have a great support in your folks & your partner and good medical care available. Count your blessings and put your boxing gloves on kiddo, you got plenty to LIVE FOR! I know you're scared, hell, we all are, but that's part of living--it's just a feeling and you can handle it. Holding you & Seth in the light of good thoughts, especially at 1:30 pm PST on Wednesday! Ciao, Tina

Michael
You have become a much valued member of this board.
We care about you and will be sending the MOST positive of vibes your way.
Lots of love
Marica

Well said Tina and Tim, Michael I will also be thinking of you tomorrow.

Consider turning "desperation" into inspiration.

Take small steps and look no farther than minutes or maybe hours ahead. (living in the moment) You can always carry the load just make it light enough.

If your are like me this is the first time you are going in for any surgery much less cancer. I do remember while in the waiting room for surgery that I was putting myself in the hands of my doctor. At that moment the fears subsided. Tim's words are sage: put your trust in your doctor's hands, let them do the worry.

I'll be thinking positively for you also, Michael. Time to forget the 'whatifs' and concentrate on the 'whatis'. Love from Helen

Michael,
Jerry has had his 4th rad today all is well.He has had alot of heart burn and indigeston in the week.It never use to bother him.He said his throat is getting sore but he is still able to eat.LPN is a practical nurse.I worked in varies fields of nursing but never oncology.My ms is relapsing. I was just diag in Dec. I was wondering why I had gotten so clumbsy in the last year or so.I still get around I am a little slower and watch my steps. I stay real tired.As far as my mother vascular demntia is caused from small strokes she was never aware of.Her memory is fading.Even with all this we have a happy household.We will all survive this one way or another.You must always keep a positive attude.That is the most important thing.
Good luck with your surgery you will be in my thoughts and prayers
Karen

Michael,

Good luck tomorrow.

My prayers are with you.

Jerry

Good luck tomorrow Michael. You will be in my prayers. I am glad you made the decision to start the fight. You can do this. We are here rooting for you.

May God send you a rainbow of healing,
Barbara~

Wishing you good luck tomorow Michael!!!
Many prayers and good positive thoughts coming your way.
The start of any journey begins with one step, The longer you travel this journey the more positive about it you become. Reading about the treatment may prepare you for what might come. Going thru the process is an individual thing. We all react differently to similier treatment. I'm hoping you have few side effects from your treatment.

Best Wishes, Danny Boy

Nelie,
You are correct that it will deepen your relationship with your husband, and it is very rewarding.

Michael,
Many prayers with you tomorrow.
Minnie

Thanks for all well wishes!

I'll chat with you all after my surgery!

The Dr changed the surgery to 11:30 AM now, so we have to leave at 5:00 AM (UUgh!)

Hugs to all!!

- Michael

Best wishes for tomorrow.

Michael

Good luck, you will be OK. I was stage IV tongue and 2 nodes. That was four years ago, and I am still going strong. Keep that chin up and go into this fighting. Lots of Love your way

Michael, Good Luck with everything, you are in my thoughts and prayers. I too, like Joan, had stage IV tongue cancer and 2 nodes. That was 3 years ago and I am still here!!! SMILE!! Take Care, Carol

Hi Michael,
By now your surgery should alsmost be over. Hopefully Seth will post something tomorrow to let us know how it went. You've been in our thoughts all day. Hope it went well.

Take care,
Eileen

Michael, I just said a "Thank You God prayer for all of the people on this forum" and one for you and your family too. The words of an old hymn keep running through my head-the refrain is "Love lifted me". Amen

Michael and Seth, remember there are those of us here who are also willing to help you with your business... as well as praying for your successful surgery and treatment. Not to mention the fact that we live less than 1 1/2hr away from Stanford with 2 empty bedrooms (We call it the Napa Inn) - get the hint?-We are caregivers too...

I made it!

Got out of surgery last night, after 7 hours!

I look like Frankenstein, but oh well.

Clean margin on primary of 1mm. (Right tonsil)

Two nodes involved, encapsulated.

Waiting on path results.

Face is numb on right side, right ear and shoulder is numb.

No problem lifting arm over head.

Smile is cockeyed, but oh well.

THANK YOU for all the prayers and well wishes!!

Love, Michael

Dude!!! You're back and better than ever! (The Frankenstein thing is really pretty effective for getting people to shut up -- 35 staples here!)

So glad you are back and sounding upbeat. Defeated? I think NOT!

:-)

Tim

What wonderful news, Michael. You have done well - you won't look like Frankenstein for long.Big smiles for you today. Love and light from Helen

Congratulations, Michael.

Frankenstein will go away.

Clean margins are a very good thing.

Be prepared to stay numb. I'm almost 3 months post surgery and still numb in my ear and face (no shoulder numbness, however). Doc said the numb area will probably get smaller, but it may not go away completely. I think this is a small price to pay for health. I don't even notice it any more, unless something brushes against it.

I still have problems lifting my arm over my head, so you're one "up" on me. No pun intended.

Keep a positive attitude and before you know it, you'll be amazed how time flies.

Jerry

Michael,

It's great to hear from you so soon! The cockeyed smile thing sounds familiar, but you can still smile - right?

Hang in there and keep up the fight.

Cathy

Michael,

Congratulations! I had a cockeyed smile too -- it hung around for about 5 months but I woke up one day and I almost fell over when I brushed my teeth because my lip worked! Just like that. You'll also be surprised at how fast your neck scar calms down.

Good job. Feel better.

Hugs, Barb

Good to see you back and sounding cheerful and energetic already. I want some of your meds. LOL

Blessings and healing,
Barbara~

Michael and Seth, I have been trying to call all day. I am so glad to see a post and will not ring the phone and wake you up when you are getting some rest. I hope that you got my letter at Stanford today. I have you in my prayers and constantly think of you. I am so glad to hear of the good margins. Follow the regime and know that you have those who will give you support of whatever kind is needed. Hugs and kisses to you and your parents, Barbara & Tom

Welcome back, Michael. We knew you could do it! Sounds like surgery went well and your attitude will take you a long way in fighting this beast. Keep up your fighting spirit and my thoughts are with you, Seth and your family.

Hugs, Nancy

Wow! I can't believe you're on and posting so soon. You ARE tough and will work through this! My smile is cockeyed as well, but it helps me with my Sylvester Stalone impersonation.. Adriannnnnn.... :-)

So happy to hear you are doing well. I had thought about you so many times over the past few days.

Best wishes for a speedy recovery.

Jennifer

Michael, Sounds like all went well. Tried to call few times but no answer! I guess you were getting your beauty rest.
K&K

Thank you all!

Last night I didn't sleep.

I guess it's true that the 2nd day worse.

My throat is killing me..and I amd having s terrible time swallowing.

Yesterday, I ate grapes, roll, banana and peaches, plus more..

Last night I couldn't even drink water.

I have an earache, jaw pain and all the numbness still.

I should get the drains out tonight or in the morning.....

I"ll keep eveeryone posted!!!!!!!!!!!

THANK YOU ALL for the prayers.

Glad to hear you are doing ok Michael, Time to heal now. As you go through the healing phase please post any questions you may have. You have many members pulling for you.

Danny Boy

So glad to hear you are doing OK, all those prayers good wishes and positive vibes really worked huh?
Take care
Marica

Hey guys...still here :-)

Am recovering nicely at the moment.

Had a terrible time yesterday. Serious pain, couldn't swallow and didn't sleep at all since I had been here.

Today, I had finally had enough of "Well, sir, the dr prescribed morphine and that's all we have"

I said look, the stuff isn't working AT ALL for my tonsil pain and it makes me constipated and loopy....

I've had some real crap nurses...such a power trip.

Finally, I called the surgeon at home.

I told him I'd had enough. He hasn't even been in to check on me ONCE since the surgery. I have this "team" of ENT's show up twice a day and look like deer cought in headlights.

They are nice enough, but can't answer any of my questions, and worse yet, don't do anything for the pain!!!

I was really fedup. Anyway, I said to the surgeon that I couldn't believe he hadn't been in even once.

He said the sugery went well.

He said we got negative margins on the tonsil (which I presume is good) But, only 1mm.

He also said there looked like the 2 known nodes and one "facial node" looled involved, but that we'll know more on Tues from Pathology.

I don't know what the 3 rd one means? More surgery? Jaw bones, etc?

I complained that he misled me whn he said I'd be "eating steak and potatoes" in a couple of days after surgery.

I explained the pain.

He said, oh, let's put you on Blah Blah it'll fix you right up...The only problem is, he said, is that it causes bleeding???

I think it's an IV version of Ibuprofren or something.

Anyway, within 20 minutes I was a new man!

Today I was able to eat soft foods, swallow water and SLEEP!!

I went to sleep at 1:00 PM and have been on and off since, getting up in between to walk around the floor to prevent pnonomia and clots.

We'll that's about it...

I still have lot's of sleep to catch up on..

Oh, I met this super guy, TIM, here today.

Had SCC of the tongue back when he was 26! Had a LEFT side MRND.

Then 14 years later it returned!!!!!!!!!!

He now 42, still looks great, had a LEFT MRND (his has staples, mine has absorbable sutures, not sure which is best?)

He said it was on his tounge again, and that they didn't get "clean margins".

He said he already used up his lifetime of Rads last time.

Has a good spirit about it! But, jeeze, if you can't feel safe after 14 years when can you???!!!

He should start to post online soon!

Well, I'm off to sleep again...Love and hugs to all!

Michael, glad to hear that the new painkiller is starting to help. I have had surgery for other problems and I didn't think that the staff had a clue about just how bad the pain was. I complained to the head of the hospital (can't remember his title) because I was taken off morphine after 12 hours and I should have been kept on it for at least 48 for my surgery. They gave me panedol and I couldn't even swallow it because the pain was so bad I was gagging. That was 4 years ago and I am still pissed off. It was a private hospital too and I was paying big bucks, not that that should mean better care, but really you expect it. Good for you for standing up for yourself. It is tough when you have just had major surgery and are really hurting. Stay strong. I am still sending those good thoughts your way. I am waiting to have my biopsy done and I have gone right off the word 'positive' at the moment. Good luck and best wishes.

If it makes you feel any better, Michael, morphine didn't do too much for my pain either the first time around. It made me crazy, paranoid and out of my head, which would have been fine if it had killed any of the pain I was having. Good learning experience for the next time should you need to go into the hospital. These days if I have severe pain, I'm better informed to say "no morphine, please"

Sorry about the crap nurses and the doctor not keeping you informed or checking up on you. I've had my share of those too. It's probably why I'm a wee bit jaded on the whole medical thing. When you do find good nurses or a few good doctors on your medical team, that's what keeps you in the game. At the beginning of my cancer saga this year, I made sure to note in my book the nurses that I COULD communicate with. Sometimes they are easier to reach than the top dog anyway, and thankfully some of them even had business cards with their direct numbers listed on them.

Hope you are healing better with each passing day.

Jen

Yes, definitely, from doctors to nurse's aids and everyone inbetween, it is definitely worth remembering the especially helpful ones and getting their cards or at least their names and numbers.

Michael, I'm sorry you had to deal with such bad pain for ANY length of time. Pain control should really be a primary concern for both doctors and nurses after surgery. Good for you for standing up for yourself. BTW, I also found morphine didn't do much for me after my glossectomy & neck dissection. I didn't getparanoid, but it just didn't really get rid of the pain.

My thoughts and prayers are with you for a speedy recovery in the coming days and also withy Seth and the other loved ones helping to care for you.

Nelie

Michael--Dad was the same with the morphine. After much "advocating" on my part, he got off morphine, ,on to shots of a painkiller that starts with a D...gotta go look in up in the notes again, some Benedryl (through IV, which helped with sleep), Tyelnol with Codeine in liquid form 15 minutes before every "meal" of liquids & soft foods and allowed him to eat. Seth and your folks can help advocate with the staff if you keep them in tune with exactly how you feel. When do you get out? Discomfort continues at home, so getting the pain meds worked out there is good. I am so proud of you for such a terrific attitude! Hang in there, kiddo...

Michael
Great you are through the worst, I stopped my morphine, I thought it was making me throw up it wasn't, then followed the worst 24 hours of my life. Glad you are well enough to post..
Sunshine... love and hugs
Helen

Dear Michael

Glad you are feeling so much better after changing your meds. Congratulations for taking charge and insisting on change. Morphine makes me very sick so I managed with panadol-related painkillers.

You are in my thoughts, love from Helen

Way to go Michael! By the way, John came out of the recovery room with 5 tubes hooked up. Got rid of 1 each day for the next 4 days, so hopefully you are ahead of that schedule. Glad to hear you are prowling the halls also. That's great. Oh, they also took 1\2 of John's staples out before he left the hospital and the other 1\2 a month later if I remember right. Amy

Thanks all!

Still in here!! UUgh!

Some 4th of July Weekend..But I feel like being here is earning interest in my bank accout of life, so that I can spend many great 4th of July weekends on the "outside" later.

I feel better still on the new meds, but they are having to stop them tonight since you can't take it for more than 48 hours.

I asked for just some Tylenol Extra Stength and you would have thought I had asked for a rock from the moon or something!

They are still "working on it"! But, I will stay on them before the last dose starts to wear off.

I spent time with Seth outside in the sunshine for a little, and have been trying to walk a few times a day.

They removed my drains today! Wierd sensations huh??!! But, glad to have to increased mobility.

Still on antibiotics and have a slight fever usually each afternoon and overnight.

I asked for some Ensure since I couldn't eat anythng this morning, and again, I AIN'T AT THE FOUR SEASONS!!! Never showed up, they said, "Oh, that's a medication since it is a food suppliment, so we have to get a Dr's order" Jeeze.

Anyway, I walked to the cafeteria myself and bought one. Felt good to get some nutrition and now I am eating semi-solid foods again.

I don't know how long I'm going to be on the anti-biotics, but I suspect that's the only reason I am still IV.

I plan on getting some good sleep again tonight.

Swelling inside the neck, and throat seem to be better and I have these weird twinges in the trama areas near my incisions...I am trying not to move my head too much, but the interns promise me it's ok to turn full left and right and up and down..we'll see.

So many errors here! One nurse left my IV infuser off for 2 hours until I noticed it.

Another, tried to give me a shot of morphine the first day just after I had administered a patient dose of the morphine!

Today, the nurse NEVER took my vitals! I finally went out before my last walk and took them myself in the hall.

So many things like this, I don't want to post them because I already sound jadded and unappreciative, but let's just remind each other, that you really need to be your own best advocate, no one, no Dr, no nurse, no hospital is perfect.

Anyway, thanks again for every thing you all have said...The good thoughts keep me going!

Love,

Michael

Happy Fourth of July Week-end Michael! I wish you many, many more much more enjoyable ones. I am hoping that next year you and Seth are living it up and can say to each other "remember last year?" .... Hospitals eh? well I would n't be here without them. Not cancer, but other problems. But can't they just be petty fifedoms? You need to be really strong to cope with a trip to hospital. Thinking of you.

You have a right to pain management. Demand it. Tell them you want to speak to a patient omsbudsman. I took morphine for months as well as being on a Duragesic patch (Fentanyl). They could also give you oxycontin, demerol or even Vicodin. They probably told you that because that's what in your chart. My wife had facial surgery and she had a demerol pump (self administered) right up until she was discharged. They then gave her Vicodin.

Be sure to describe your pain using the pain scale 0-10, 10 being the worst.

During radiation they asked me every day what my pain scale was. Tylenol extra strength - thats like putting a bandaid on a ruptured aorta. Remember the doctor has to put it in your chart - the nurses can't change or give you anything without a doctors order. Are you at Stanford? You can always have Seth bring you food.

What a rotten experience you are having. As I read more and more of it I am and will be eternally grateful to all of the medical staff and specialists who have been with me throught the surgery and two biopsies and my treatments. They have all been kind, understanding and simply a-1. I am sorry you are getting the nasty ones.

Morphine makes me see aliens and makes me feel like one. Does little for pain and just makes me sleep. Dr. White had me on Lortab liquid after my surgery and for me the pain was gone within 10 minutes of a dose. I believe it is Tylenol mixed with Codeine. I got an anti nausea script, a script for steroids to ease and help the inflamation and one for Zanax for my nerves.

I hope things start to go better for you soon.
Prayers going up,
Barbara~

Hi Michael, last night I kept thinking about you and the pain and the "pain in the necks" on your hospital staff. Hope you have the strength to kick some butt and get what you need until you get out of there. When John was discharged, we got an evaluation sheet to fill in and send to the administrator. And I told them very honestly about the things that upset us. Hopefully you will get the chance to do that also. Think getting well. How's Seth? Amy

After my last surgery they sent me home with liquid oxycodone, which worked much better than the liquid morphine.

But again, I do understand your frustration. I too was hungry and the dietary department kept sending up diet food with low calorie written all over it. They must have considered me a pain, because I kept sending it back telling them I've lost ENOUGH weight and to send me stuff with maximum calories in it.

One nurse walked into my room and went on and on about this soap opera that she always watches at that particular time (guess she was hoping I would change the channel so she could watch her favorite soap) I just sort of assumed a blank stare... lol.

Everytime I have gone into the hospital, they have had a shortage of patient rooms. The first time in January, they put me on an "overflow" area where they had cheaply converted office space into patient rooms. All patients had to share a bathroom down the hall. It was gross and they weren't real good about cleaning it after taking samples. The last time they had to leave me in the recovery area after surgery for an hour longer because there were no rooms available.

Michael you don't sound jaded or unappreciative, but realistic. One sort of HAS to stay on top of it all. Even at my last appointment, they mentioned a CT scan coming up in September. If I hadn't brought up questions on scan and followup care, I probably wouldn't have known. They also told me that I can't always count on someone contacting me about scheduling it up, so somewhere in the back of my mind I have to remember that if they don't call me about the CT scan, I better get on the phone and make the arrangements so THAT very important item doesn't fall through the cracks.

Jen

Yes, you would think in the hospital when you are that sick, you wouldn't have to ride herd on what they are doing, but you really do. I was last in the hospital weeks ago for about 9 days because I was neutropenic and had some absolutely excellent nurses and niurses aids BUT there were still some screw ups and flubs.

The biggest being that I needed Jevity for food through the tube and they sent up Jevity that had an expiration date of 2004 stamped right on it. It was actually so old, it had a different name and label becuse I guess they changed the name about a year ago. You think that might have gotten someone (dietician, nurse, someone) to CHECK the date (that's why I checked the date) but apparently not.

I compained and the nurse I complained to was VERY apologetic. The next day, the head dietician was in my room apologizing and blaming it on the fact that they ahd had to buy cans fromm another institution instead of a supplier because they ran short and it must have been "the other institution" that sent them bad cans. STILL doesn't explain why no one checked. Jeez. I'm in the hosptial because I have next to no resistance to infection and I could have eaten a can of something that had gone bad if I hadn't thought to check the expiration date myself.

Then I found out that there were two patients with antibiotic resistant infections on the floor, one on either side of my room and we had been assigned the same nurse. That's smart don't you think? Assign the same nurse to people with infections that can't be cured by antibiotics and also one of the patients on the floor most vulnerable to cathcing an infection. And hope that nurse ALWAYS remembers to wash their hands.

I found this out, though, from a really good nurse who was trying to convince me that if I was given a choice I should go home to recover, even though I was still running a fever. I took his advice.

Unfortunately, due to the shortage of nurses they are often given assignments of patients that are resistant to antibiotics and "normal" patients. If your nurse followed good handwashing, you should be fine. They should also use gowns and masks when going into a patient's room who has that type of infection. As far as not checking the expiration date on your Jevity, that is inexcusable. It does not matter if it came from another facility or not. It should have been caught by the dietician or the nurse, NOT the patient!!

I'm HOME!!!!!!!

HAPPY 4th to all.

I just got home around 4:00 pm, and went STRAIGHT to sleep for 5 hours.

Then had a light pasta dinner with nutrition shake.

Pain is currently a 3 under management with alternating doses of 250 mg Naproxym, then 2 hours later Tylenol 3 w/Codene, then 2 hours later Naproxym, etc...Staying ahead of the "pain curve" and GLAD to be home again! (Even if it was a 4 hour nausiating car ride!;P

Have a great night all...

Hey, Michael!

Good that you are home and healing. You will feel better every single day, guaranteed. Particularly your throat. Neck swelling will decrease pretty quickly too -- at least mine did. But kick back for awhile. Eat a lot of ice cream, which will go down well, and also put on some weight, which you will lose when you do rad. I used the in between time to eat anything I wanted, and as much of it as I wanted, with no guilt. Cheesecake figured in there prominently, and lots and lots of chocolate.

Anyway, so glad you are home where you will feel much, much better.

Welcome home Michael and I second what Joanna said about eating WHATEVER you want with no guilt.

Happy to see you back Michael and feeling fairly well. Get plenty of rest and eat lots of yummies before radiation begins.

Blessings and healing,
Barbara~

Welcome home Michael

You have done well - pamper yourself and allow your body to recover. You will need all your physical and mental strength in the coming weeks as well as your wonderful quirky sense of humour.

Love to you and Seth from Helen

Right now I can barely fit anything larger than a pencil eraser in my mouth due to the opening constriction and pain...But, I believe each day will continue to see improvement.

Can't wait until I can down a slice of Dolche de Leche cheesecake!!

Until then, I'll settle for water since I need it so badly.

My surgeon just called from his cell to let me know that he still doesn't have path results (UUgh!).

He said they had a change of guard on July 1st and with the holiday it may be a few days or early next week (Huh!?)

Anyway, he said that I am DONE with surgery basically and the only thing we need the path for is to determine radiation/chemo or one or the other individually, etc.

I am inclined to do both (radiation and neo-adjuctive therapies {eg: erbitux}) regardless of the Path reports.

So, at least he called me.

He said the pathology will tell us whether there was something something cell encapsulation, something facial or nerve involvement something something, and one other thing, maybe "Grade" of cells?

I dunno.

He said he is sure we got a 1mm margin clean, and that's what matters.

Ok, no real news, but thought I'd give everyone the latest. I hoping for all good news, ie: only one or two nodes really involved, no other spread, low grade (non-agressive), etc.

Yeah Michael! Glad you are home.This sounds like an echo but-- please eat, sleep and eat some more. This is REALLY IMPORTANT. Amy

Hiya Amy..!

I am concentrating MORE on drinking fluids to avoid dehyrdration.

What nobody on here knows is that I am about 60 + pounds overweight, so I am only concentrating on fluids and nutritional suppliment drinks.

Oh, and I sleep great! Between the 7 to 8 pain scale hits every two hours...I take meds every two hours, so I wake up a few times mid-night...no biggie since I lounge around all day too! :-)

I'm lucky to still have both my parents with me and Seth through all of this. But, I am sending them home tomorrow... They have been at my side almost every minute since Diagnosis, and I think THEY need a break, not to mention their businesses need them!

Seth is really working hard to take care of anything I need. He feeds me ice chips one at a time at 3:00 AM when the pain hits an 8.

By the way, ice chips ::: ICE CHIPS ::: I know it sounds polly ana, but they really help (me anyway) to dull an 8 or 9 down to a 6.5 or 7, until I can take another med, etc.

Speaking of weird treatments, today I got one of those "Mouth Guards" you can pickup at any drug store and "custom mold" it to your teeth. It helps tremendously!!! I realized that as the pain approaches a 6+ it has this cascade effect...I grind my teeth together reflexivly from the pain, which cuts into the tonsil wound more and causes more pain, which makes me bite down more...you get the point. Anyway, this is especially bad while sleeping when I'm not able to make a concious effort not to grind. So, this little $ 20 gadget that I had to put in boiling water to fit my teeth saves me some pain. Just wanted to mention it in case someone can benefit from this info.

Remember to keep things that go into your mouth as steril as possible to reduce infection, swelling and inflamation.

I am starting on barley green and fresh carrott juice tomorrow as just one more added insurance against this beast!

Anything I can do to improve my odds, even just 1%, is worth considering.

Infact, that's really the reason I will starting a new thread under the treatment topic.

I have to begin radiation (and/or chemo) soon and can go anywhere.

I am trying to decide between:

1) Memorial Sloan Kettering (NY)
2) UCSF (San Francisco)
3) MDAnderson (Houston)
4) City of Hope (LA)
5) UCLA (LA)
6) Hoag Cancer Center (Newport)

These are in the order of likely selection. Hoag is 15 minutes from our Laguna home which is why I am considering it, plus they brag about a HUGE survival rate for cancers in general, not too much experience with SCC (H&N) though.

LA is about an hour from our Laguna home.

SF is about 3 hours from our lodge in Mendocino.

Another consideration is that only 4, 5 & 6 have the new TomoTherapy which is what I am going to try to use.

http://www.tomotherapy.com/company/comp_customers.html

Also, Stanford has this new contraption...

http://www.stanfordhospital.com/clinicsmedServices/COE/cyberknife/ckHome.html

Who knows!!??

We have made arrangements to be away from the resort for 6 to 8 weeks as needed, checking back as often as we can, both of us on weekends the first couple of weeks, then Seth alone a few times.

My folks live in the Laguna house, lot's a friends, family, support and familiarity (freeways, etc). Room for our dog (Zach the 100# black lab moose!), our room is there just like we left it 6 months ago, all very nice and comfortable.

BUT, I want to make the smartest decision for my long term survival, so if that mean's moving to a 2 star motel in 105 degree, 100% humidity HOUSTON for 2 months, let's do it!

Can you guys help me decide over the next couple of weeks?

I want to start to make plans now.

I have read all the reports about using a CCC or at least a CC. I know the statistics out there are hard to follow.

ANY advice or testimonials are appreciated!

Welcome home,

I know the feeling. We all do. Anything is better than the hospital.

I hope you feel better and better every day.

I haven't been a member of this forum for too long, but you have set the record for the most posts in any one thread that I've seen. 5 pages and going strong. You have certainly struck a soft spot in all our hearts.

We all care for you and wish you a speedy return to normal every day living.

Jerry

Michael,

My mom lives in Malibu and went to UCLA for her chemo and radiation treatments. She had a very good oncologist. I think its wherever you feel the most comfortable. I know for my mom being close to home was very important as towards the end and the first few weeks after treatment ended it got pretty difficult for her and she just wanted the comfort of her own home and bed.

My mom was about 40 pounds overweight when all this started. She never had a feeding tube and had two very major surgeries that involved skin graphs and a trake and then with the radiation and chemo she lost about 60 pounds making her about 20 pounds underweight and quite unhealthy for a period of time. She was hardly getting any nutrition causing her body to start using her muscles to survive. When she finally started putting weight on is when her recovery progress really started to show. Be very careful with your weight loss my mom was really excited to finally fit into a size 5 but the rapid weight loss really had an effect on her overall general health. Now she is at a healthy weight and is starting to have to watch what she eats. My mom took a little longer than most to start feeling better. I really think it had a lot to do with the nutrition thing.

Feel free to contact me if you need anything.

Hugs,
Dani

Glad you are home Michael.

Please don't think of this as some kind of weight control program. If you proceed on to other treatments you will want every pound extra you have.

Take care

Oh, I am not intentionally trying to use this to control my weight, In fact one of the hardest tortures is to see incredible foods I love and knowing I cant swallow them!

Yay! Welcome home Michael. So glad to see you are controlling your pain okay. Makes me MAD they didn't help you control your pain better in the hospital. I was alternating between morphine and liquid Loritab in the hospital and was really amazed the morphine wasn't more effective that it was.

Then, they had me scheduled to stay on all that until I was released from the hospital. I said "But...what are you sending me home with? I want to take what I'm going home with.", and had to wean myself off the other pain killers. Then..would you believe they tried to send me home with pills instead of liquid meds? sheesh.. I was like...okay YOU go through this surgery and then swallow a horse pill. :-)

Anyway, enough of my ranting. I'm so glad you are doing well and able to eat some real food. Will help you keep up your strength before starting the next phase of your treatment. I hope you continue to do so well!

Jennifer

Michael!
You sound so good so soon! I'm glad you are pro-active and took charge even while in the hospital. They say "good patients" have a lower survival rate. Passive is not what we need to be.

I'm going to UCLA tomorrow to talk to a Head/Neck Dr. and I'll let you know what I find there. I searched cancer Dr.'s on the web and then researched their credentials and specialties. I emailed the one I liked best with my short history and asked him to consider me. He wrote right back giving me his private number! I was impressed.
I was treated at USC for years but their cancer department doesn't wow me. My Oregon surgeon strongly recommended UCLA and others have commended it as well so I'm hopeful.

Do watch losing too much weight. Even radiation takes it out of you. I lost 20 pounds just doing that! My Dr. "prescribed" chocolate milkshakes every day. Lots of good calories and easy on the throat. Also Ensure has a great mocha flavor I still crave.

The good news is that you are taking control of your illness and you and Seth have been able to figure out the work issues. You are lucky to have such nice options. Now's the time to start the humor. Read Stuart Smalley books and commit to making yourself laugh. For some weird reason it helps.
Love and hugs!!!!!!
Ali Mae

PS: Loritab is great! It tastes like Midori liquor. I was on it for weeks!

Michael,

Congratulations on being home. I know what the middle of the night pain spikes are like -- I remember them well. I just passed the two year mark on July 1.

I was lucky not to need radiation or chemo so I can't give you advice on that decision, but good luck. I know you'll hear from a lot of people here who can give you direction.

Barb

PS The lodge looks beautiful.

Michael,
I had breast cancer 9 years ago. I had my surgery and treatment out of St. Joseph's in Orange. It was an ok hospital but not great, however I loved my surgeon. For treatment (a mastectomy was my only real option) I went to UCLA for a 2nd opinion and used that oncologist's advice for treatment but did the treatment in Orange.

My neighbor's mother did something similar- got treatment advice from MD Anderson but had a local Dr administer the treatment.

I just had surgery yesterday (left neck lymph node disection and left tonsillectomy, and various small mouth biopies) at HOAG in Newport and thought it was a very nice hospital and was happy with the serivce. My surgeon was Dr. Strelzow who came highly recommended to me by several other Dr.s (my pathologist, Primary care physician, my oncologist, and my son's respiratory specialist, my pediatrician)

No hospital is perfect though and you always have to double check things. I like the oncologist that was recommended to me but since I don't have a diagnosis yet I have not begun to research into treatment.

My point is - find a DR you like and also find the best treatment for you - but having the treatment close to a home is very nice. A four hour drive seems very far.

Good luck!!!!

Hey Wendy!

Congrats on comming through surgery...You are ALREADY online and posting to help other people??

You are AMAZING!!! I want to return to OC just to hang with you and maybe some of your strength will rub off on me.

I like HOAG. I think it is a fine hospital.

There is an Oncologist there (in fact the head of the dept (Dillman I think) spoke to me about treatment options over the phone...GREAT GUY!

My sister's friend is an oncological radiation technician at St Josph's, and she has been a wealth of information and references...

I'll be praying for good pathology results from your surgery!

Are they looking for a primary? Do you have any diagnosis yet?

Be sure to ask for Dr Peter Chen at Hoag for radiation...He's the best there and runs the new TomoTherapy CT guided radiation device.

Please keep us all posted...

PAIN FREE!!!!

Last night I took one of the new Tylenol Extended Release (Exactly WHAT I asked for at the hospital when they told me no such thing exists!).

Boom. Slept all night long!!!!!!

Today I have ZERO pain. Some muscle tenderness at the base of my neck, and a slight tingle at the site, but no pain...

In fact, I haven't taken any prescription meds since 6:00 PM last night.

I just took another XR to keep it away while I am working today, but I wanted to let you all know.

I know I'm going to sound bi-polar, but if you could just see what a glorious day it is here today! I had my morning green tea on the new deck overlooking the indigo blue of the Pacific.

My parents are still with us but will most likely return to their So Cal responsibilities today.

Then Seth and I will be deciding on the next course of tx.

Love and hugs!!

- Michael

O.K so now we all want to come sit on your deck. Amy

I just heard from the surgeon with bad news on the path results

He said there were 3 nodes positive (of the 59 removed)

He also said that there IS perinural involvement (whatever that means), AND angiolymphatic invasion (again, not sure what either of these means EXACTLY), so I said..."that sounds bad.."

He said.."No, VERY bad..."

I asked about the cell differentiation and he said it looks like "Moderately Differentiated", which I am guessing is Grade II.

He said the path DID confirm clean margins at least on the primary.

So much for a beautiful day!!

:-(

Right lets stay positive.
Clear margins are good, 3 out of 59 is good, so hang on to the good side, thats what I'm doing at the moment, so I will light a candle for us both tonight...
Sunshine... love and hugs
Helen

tell me what's new with your struggle Helen?

Also, you don't have friends or family affected by the blasts today do you???

Michael, As I understand it, perineural involvement means the tumor has included some nerves or part of a nerve. Which means the cancer has more chance of travelling elsewhere through your nervous system. Angiolymphatic invasion means it has included blood vessels or small lymphatic pathways )again, this is my best understanding. Your doctor will have a better one). Again, indicating more of a possibility of cells travelling elsewhere.

It's definitely an indicator you should get the most aggressive treatment available. I had both of these in the path report from my tumor too, even though I didn't have any lymph nodes positive.

On another note, I just need to vent about this. What is going through a doctor's mind when you, obviouly worried and afraid as it is, say "that sounds bad" for him to reply "no that's VERY bad"? What possible good do they think they are doing there? Couldn't they just say, "yes, it's bad" and leave it there? Is there some *point* to increasing the fear that every one of us has of losing our battle with this disease?

My ENT has also said things like this to me (as in the last appointment when I said "I'm really scared of a recurrence" and he said "well you should be scared". Honestly, in what way was that helpful?

I am so confused..

How could you have had both of the same characteristics but have been Stage II?

I got the feeling that since I had 3 nodes involved I am Stage IVc or something.

Any ideas?

Michael, be very careful getting to hung up on stages and the like. Staging and grading is a very useful tool for physicians and very misleading to patients. Staging, for example, is used for phsyicians to communicate amongst themselves the behavior of different cancers. And because you have certain attributes does not necessarily mean what you and I would believe it to mean.

Take me for example. When I was orginally diagnosed, CT'd (twice) and biopsied (twice) everything indicated that my lesion remained in situ. About 24 hours later they decided the cancer was invasive and I had a hot node. So, I was, according to the charts a Stage III, locally advanced case. At the end of my treatment, I asked about this and was told that I was pretty far from that and would I please stop playing doctor!!

Remember this is your battle. To be fought on your terms. It will be as discouraging or hopeful as you choose . . .I know you will choose for hope!

Tim

Thanks Tim.

I appreciate the encouragment.

It's so HARD to stay positive right now.

I was ready to move on to the next phase. I had the 6 or 7 hour surgery only 7 days ago today, and this morning I felt better than I did BEFORE the surgery!!

Did your surgery path reports indicate Angiolymphatic invasion or perineural involvement...? I would guess not since you had no nodal involvement.

We both have RIGHT TONSIL, but I don't see what stage you were, maybe III? Or Stage I, since there was no metastatic malignancy..?

Thanks for the kind words!

I had one hot node that was taken care of by chemo and radiation. My surgery came after the rad/chemo. Technically, I was stage III (T2N1).

Keep your chin up!

Tim

It's SOOO hard!

I am normally very positive and optimistic.

Today, I just had a total meltdown, starting to cry uncontrollably.

I had received a gift of a new wine from a local vintner. It's his first year of this crop (a new Pino Noir), and he said "keep it in the cellar for six months before opening it"...

It hit me!! I might not be alive in six months! I feel so much gloom.

Since my cancer is so advanced, should I be working towards quality of life instead of treatments which are likely to fail anyway?

I feel so lost...this is unfair to all of us!

Mike, Tim's words are true. Forget the statistics! let me try another example: even if we imagine the statistics for your "Very" serious path report give you a 10% 5 year survival. How do you "know" that you are in the 90%? The answer of course is you don't! You could take the "quality of life" easy way out but if we lived our lives that way we would not make it past the age of three. After all, life was really good when our mother did everything for us and it went down hill after that.

Live one day at a time and try to stop looking into the future.

You need to fight this because there is always a chance that you'll win.

Unfair yes. This disease has made clear to me how life is unfair. We all have a bit of a pity party over this reality in our lives and it may be deserved. Remember though, how much of a blessing that you even have an option for treatment. That you have much more even now than 2/3rds of the worlds population. Look around and you will see people that are far worse off than you are right now. Yes life dealt you this and it isn't fun but you aren't blind, or in a wheel chair. We aren't born with a garantee there is no refund if you aren't happy with what you have. The choice is rather simple when you look at it: you either deal with it or you don't. You have already started dealing with it, keep on going. (and realize there might be setbacks)

PS I don't like that your ENT said that either and further let your oncologists deal with things they are trained for it.

I think you are 100% correct Mark & Tim..Thank you both.

Michael,

In answer to your question about my staging, the perineural involvemnt and lymphatic invasion referred to features of my primary tumor on my tongue, not anything in my lymph nodes (there are small lymph pathways all through your body so the angiolymphatic injvasion just menas that there were blood vessels or lyumph pathways that had become a part of the promary tumor). So I am a stage 2 because I have a tumor the right size for a T2 and no nodal involvement (as far as we knew--I only had a neck dissection on the tumor side and there is a small chance that there was lymph node involvement on the other side that wouldn't have shown up on the CT scans. It's a pretty small chance but large enough that I needed both sides of my neck, esp. the nodes, radiated.

Like you, I am into learning as much as I can about staging, risk factors, prognosis, and the science behind this. I firmly believe that for some of us, that is how we cope the best, while for others it's distracting and dismaying and they don't need that stuff to cope. Go with the styke that feels most comfortable to you.

But I will say that the more I learn, the more it's clear there's all sorts of grey areas. You don't have much time to make a treatment decision and it's true you will never learn as much as the experts, which is why it's also important to get expert opinions. Ask them for research to read that would justify their recommendations. The docs I ended up trusting were the ones who could produce that and who didn't treat me like an idiot in terms of my abiulity to underetand the research (I also have a lot of grad training in stats adn experimental design and I was very grateful for that in sorting the wheat from the chaff in terms of the research I found).

Let me know if I can answer any other questions you have. I saw you are going for second opinions next week which I think is great. be aware (you probably already are) that they will want path slides, most likely, from your surgery as well as the path reports so there may be some running around you need to do before then to get things sent.

Nelie
Nelie

Michael, we just gotta live each day, and hope to live antoher day. Do you need some mood elevating medication or tranqulizers to help you through this. Ask someone. Amy

Michael,
Do keep positive! Your doctors will do all they can medically, but YOU must do all you can with your determination and attitude! There were many, many days when my husband literally fought going to another radiation or chemo session - - he was so sick he just didn't think he wanted to work at it anymore. It took a very, very stern approach from me to 'change his mind' - - I had to remind him just what it was he was fighting for......in his case, it was his family. He had determined early on that no matter what the outcome, he would 'win,' but that those who love him might feel like losers. When the days were bad, I'd let him know that I wasn't ready to lose.... and that put things back in perspective for him.
I see the photos we took after chemo and radiation and surgery and recall how afraid I was that I would lose him. I look at him now and see a lot of the "old Tom" I love so much. He DOES look to the future because it is what he fought to see. He may never be 100%, but he's very happy that he's here to experience another day with us.
You keep the end of the rainbow in sight, Michael. We'll remind you often of the pot of gold waiting for you!
All our best
Tom and Nicki

I seem to be differing somewhat from what other people are saying in advice about staying positive, and that may be because my experience getting through this is as being diagnosed with stage II, which, let's face it, carries less scary stats with it (though I still found them pletny scary especially given that I had risk factors like perineural invasion).

So, anyway, I hesitate to say this but I will. Its about what worked for me, there may be other advice that is more suited towards what will work for you.

Speaking strictly for my experience, I needed to get through a couple of times of "meltdown" which included a lot of fear and despair in order to really reach total warrior mode in fighting my cancer. I'm glad I didn't try to numb those moments out too much with sedatives or pain killers because once I got through those I realized that despite all that, the one choice I had was to fight or not to fight and given that one choice, fighting was the only option I'd be happy with later. And I mean "later" as in if the worst case happened.

Of course if you can't seem to pull yourself out of despair for days on end the it's time for medication to help you with that. Depression can be crippling in fighting the good fight. But sometimes, going to that darkplace a little can be helpful in forming resolve.

I totally agree Nelie....I was not the patient and experienced a few "Meltdowns".
You just pick yourself up ..dust yourself off..and start all over again. Just like the song says.
You can handle this Michael... you and Seth and that big extended family you have.
Onward and Upward

Marica

Michael,
I just visited UCLA and I loved it! Very up to date facility, extremely professional staff and warmth all over the place. The "waiting room" in the oncology area was huge and furnished as darling conversation areas with stuffed couches and end tables. Every Dr. had a support staff that came out and greeted you personally before taking you back. I watched others coming back while sitting in my room and each was accompanied by a positive, very personal nurse who was very aware of the person's status. I had a nurse take all of my records back before the appointment. Then met with an assistant Dr. who'd obviously read them extensively in the 1/2 hour wait. He knew my medical history from 1970! The big man himself, an expert in head/neck oncology, then came in and discussed every detail of the disease with me. And answered every silly question we asked over and over again. No sense of hurry. The place is awesome and worth a visit. When involved in support groups and even at USC medical ,people would tell me of UCLA success stories. I can see why. These guys are state of the art.
You sound so good for only 7 days. I still had all my feeding tubes then and couldn't talk yet. You are healing wonderfully. I know I had perineural in 1993 and it's never advanced in the brain nerves beyond what it was then. I didn't have positive margins in '93 and so they did rads. I had 21 nodes removed and a few were malignant. 2 new malignant ones have just shown up in the opposite side of my neck so it's creeping. But ACC is relentless. The Lung tumors are there and multiplying. But they can't do anything about any of them. The Dr. said to go enjoy life, have wine and dance and not worry. I'm looking to house swap with someone in Italy.
Hugs and strength. You are doing better then you know.

Ali Mae

Michael, you are my inspiration. I logged on today because I was feeling sorry for myself, sitting with a very painful mouthful of stitches and no answers. I wish that I had something inspiring or uplifting to say but nothing that I can think of would come near the mark. Your courage inspires me. It may not seem like it at the moment, but simply logging on and sharing is a big step in my books. I am thinking of you and praying for you and your family and also for your doctors that they may be guided with wisdom.

Oceanangel:

Thanks for the comments and you prayers!

Hope you are feeling better by now.

I just got settled in my hotel room in HOUSTON!

My flight got redirected to Austin first due to Dennis Storms here in Houston...

My appt is at 7:00 AM tomorrow!

I can't wait to meet the team at the world- reknowned(sp?) MD ANDERSON CANCER CENTER --

I'll be posting here right after tomorrow and let you all know what I think...

I hope to meet an Oncologist and Radiation Oncologists tomorrow and maybe a Dental Oncologist and Opthomologist.

I meet be here a couple to a few days...

It's a little bit lonely and I'm kinked up from being stuck on a plane for 5.5 hours.

But, I am feeling better everyday from the surgery. Still the 'disturbing tingly feeling in my shoulder, neck and chin...I've decided that "feeling" is my body EATING CANCER CELLS UP :-) That makes it all easier to tolerate.

Also, I am able to eat more today :-)

I am practicing opening my mouth more and more (Hmmm, can I fit this huge chocolate croissant inside) - Just kidding, I am eating ALKALINE items as much as possible, but glad I can CHUG water like I could 2 weeks ago. (pre surgery)

Anyway, hope everyone is great!! Talk to you all tomorrow...

Michael

Sending positive vibes your way Michael. I hope your appt. went well this morning. Please post soon and let us know what you found out and what your take on MD Anderson was. You are in all our thoughts and prayers.

Love,
Jennifer

Hi everyone...

I'm back at my hotel now.

It went fine this morning...
Lot's and LOT'S of WAITING, but I am getting used to that as being part of this process.

Aesthetically, MDAnderson is mediocre at best...The campus is a huge cluster of tall buildings...but the shear size is still impressive.

I got there at 7:00 AM (5:00 AM on my internal clock!)

Michael, it is important that you feel good about the people. If the surroundings are clean, that is good enough. Glad they appreciated that you know what you are talking about. I was fortunate to have that kind of docs too. Makes a big difference. Thanks for the report.

yes, thanks for the report Michael. I was thinking about you and hoping you got some answers and a feeling of fondong somewhere where you could get treatment. Houston in July-September is certainly a place no one would choose to be because of the location or weather but you're going to be spending all your energy getting through your treatment and I don't think you'll be bothered by that too much.

It sounds like a great atmosphere. Good luck at Sloan Kettering.

Glad to hear that Michael. Sounds like you feel comfy with them. I remember how I just loved my Onco from the start. They took me to a room in the back of which was a large lounge chair. I sat in a regular chair and they said "Oh no hun, that chair is reserved for you my dear." I asked where the doc sat and they said in one of the folding chairs. hahahahahaha Then they asked if I would prefer coffee or tea and everything and everyone has been just as delightful ever since.

This aint no picnic but it sure helps when you get a little sympathy and understanding from your medical caretakers. I asked for a back rub one day and they gave me one! hahahahahahha I hope you find your experience as good as mine is.

Have a great day and bless you,
Barbara~

Hi Michael,

Remember me from the other board! Im so glad you came over here!

I have to say, reading through your ordeal has brought me to times of fear, sadness, excitement and happiness all in a matter of an hour or two.

Im so glad that all went well with your Surgery and that you are climbing that hill and giving it all youve got. When I was little my dad worked for a company called MATRIX, (long since defunct) and he used to take me to MD Anderson with im to install and Service the CCTV Video cameras and equipment at their facilities. I agree their buildings looked somewhat dated but it was an impressive campus nonetheless. I remember he put in an ID Badge system and we made some test badges with my picture on them. I think youll find the Texas hospitality quite relieving in your time of need. I have to say even back then when I was 9 or 10 years old, I had a fear of the place and wondered if Id ever end up their. I understood what it was about even at such a young age.

So I guess Ill cut to the chase. Remember I told you about my ENT appointment on the 28th? Well I went and was so scared sitting there in the lobby KNOWING he was going to look at the reddish area on my tonsillar pillar and we would certainly be getting a biopsy that day... but to my surprise after sticking the scope down my nose and looking at my vocal cords, inspecting my mouth thoroughly and looking in my ears and at my tonsils, even as big as they were, he did not seem one bit concerned about any of it. And he was a younger guy that was impressed with my knowledge of terms like "tonsillar pillar" hehe... and came well recommended by friends and doctors.

Well for a while I was happy, but particularly tonight the fear has come back from a few things you mentioned.

For the past few weeks, even before the appointment, Ive noticed occasional pain and soreness in my neck muscles on the right side. It has lessened somewhat lately but sometimes its uncomfortable. It feels like it goes all the way down into my upper right chest and I fear it is Lymph nodes enlarging

In addition to that Ive had ringing in both ears, but particularly occasional ringing in the RIGHT ear, sometimes I get headaches at the right side back of my head, and now when I clench my jaw on the right side I hear a "rushing" type noise in my ear, kind of like white noise. I dont hear this on the left side. My right ear also feels congested and I feel like I am losing hearing out of that ear. Also if I open my mouth real wide I feel a discomfort sensation in the back right of my throat that seems to travel to my ear a little.

My jaw is also tender and if I press hard on it its a little uncomfortable.

So I guess at this point Im going to reschedule and get my tonsillar pillar biopsied since its still clearly red in some types of light compared to the other side (in direct bright light it looks similar to the other side). My tonsils are still big but he said not to bother them if they arent causing me too much pain or difficulty, but today I had some hoarseness again. Remember, Im 22! I have to say, if I do get up the guts to have that pillar biopsied, and it comes back clear, thats IT. It is what it is at that point and it can have me if it wants, I cant allow myself to be tormented over my health anymore. In one way or another health worries have eaten up over 1.5 years of my young life already.

You are such an inspiration Michael. I dont know whats going to happen to me over the next few weeks, but I only hope I can have the same resolve you have shown my friend...

Here for you,
Ian.

P.S. Theres a song I want you to listen to if you have a way to download it, if not just shoot me a message Ill get it to you. It's a song by Mark Knopfler called The Trawlerman's Song. Its all about picking up and moving on again (in this case a Shrimp Trawler boat that is being fixed up to go out again). Music helps me through alot of things... this song was really good when I heard it.

Hi Michael,
I've been on vacation but your surgery and recovery have not been out of my mind. Glad your surgery went well and are now going to the very best for further treatment options. While I know nothing of Houston, I'm not certain that 61st and 1st in mid July (Sloan)except for the many restaurants in the neighborhood, isn't any better than Houston, weatherwise. I wouldn't let the weather determine where I go. On the other hand, if these centers can set up your treatment so you can have it in CA and have your dog and friends, without jeopardizing the outcome, I would go for it. Just make certain that the treatment will be equivalent.

Are they recommending IMRT, I can't remember.

Take care,
Eileen

Hi all!

I FINALLY got to NYC today! It was an 11 hour flight! 7 of them were spent on the tarmac at Atlanta Airport. Weather kept us grounded for hours, but I finally got here after changing planes three times and even airlines once.

It's 12:30 midnight here and I have my appt at 10:00 am tomorrow.

It's good to be back in New York, I've always had a warm spot in my soul for this town.

I'll be meeting the team tomorrow and if they are on par or better than MDAnderson this may be my first choice...One can't help but feel alive in the energy here.

I still have the tingles and it's a big annoyance. To check on that, on the surgery results, healing, etc. I am meeting with the Stanford team on Monday.

I want my incisions checked over, and ask them about the tingles and headaches I've been having.

Houston was refreshing in their "team approach" and what I keep saying is how much humility they all seemed to have despite their tremendous rankings.

It is quite amazing to see almost an entire mid-rise dedicated to the art and science of HEAD & NECK cancer treatments, I doubt Sloan will be as extensive.

I'll let you all know...Thank you for the positive thoughts, prayers, love and good energy!!!

Ian, I've been following your other posts on both boards, and I have to repeat my earlier recommendation that you consider asking for some anti-anxiety meds to help medigate the symptoms that might not have physical cause.

And, even if it is something serious, you will be better equiped emotionally if things are tempered to a more manageable level.

Have you contacted the ENT about your concerns? Maybe you should write a quick email or fax outlining the items you did here, just to make sure he doesn't dismiss you prematurely...Dr's are more careful when things are in writting (paper trail / liabilities, etc).

Eileen, yes, everyone I have seen to date is only considering IMRT, although I am still sold on TomoTherapy, but you'll see under my other post in "Currently in Tx", "Makeing a decision (again)..." there are a limited # of these out there.

MDAnderson said it is basically a marketing name, like the difference between 2 high performance sports cars, but I tend to disagree since Tomo takes a simultaneous CT scan at the start of EACH radiation session and automatically adjusts...

Then again, maybe I should skip radiation (just kdding! Joanna)

Hi Michael --

Good luck at Sloan, Dr. Pfister is great -- they are very organized there as well re coordinated care. Sloan is currently #1 (by a hair) over Anderson for cancer, Hopkins still #1 by a lot on Otolarynology, #3 on cancer.

I think Hopkins is the only one of these three centers with tomo on-line -- I will be getting that myself - but not sure.

You will find out that Sloan does not routinely do neck dissections, and then only post-treatment. It is quite interesting (and a bit unsettling) that there remains so much difference of opinion amongst the top people as to the best approach. As someone told me recently, treatment for HNC is as much a art as a science...

Good luck, Barry Cooper

Hi Barry.

thanks for the feedback.

I think you will be getting excellent treatment at Hopkins if thats your choice (if I recall correctly).

I spent the entire day at Sloan today.

They are nice enough. Very NY feeling. (Scafolding all around, construction going on everywhere, not cosmetically oriented).

But, that's part of the NY charm I seem to like, the raw, nitty gritty reality that separates NY from the sterile, plastic Orange County where I am from.

The clinic itself is not on the scale of MDAnderson. They certainly have a dedicated team of Head & Neck staff, but not the size or scope of Anderson.

I ended up waiting over 3.5 hours for the first Dr!!!!! I really think that kind of delay is unprofessional and unacceptable, but I kept telling myself I am there to save my life, what's a few hours delay, plus they DID squeeze me in last minute as a favor, so no biggie.

Dr Pfister was fine. Very professional. I'd say more conservative in his prognosis and presentation that many other Dr's I've seen...He just very matter of factly said, "...well, we see a lot of your type of cancer, and I'd say you have an even chance of long turn survival.." (in other words 50 / 50)...I am SO SICK of hearing 50 / 50 !!!!!!!!!!!!!!!!!!!!

Makes me think of rolling the dice, and if the # is even I'm dead, and if it's odd I live. Quite upsetting.

Anyway, they offered me the study also (for Erbitux) of which I am very committed to trying.

They discussed things ad nauseum, and I left for lunch thinking that Sloan wasn't right for me.

I just had this feeling from everyone that this was more of a "job" than a "passion". Several people (not all!) at Anderson I am sure this is a passion for them.

Then, I met Dr, Nancy Lee, the H&N Radiation Oncologist. She's AMAZING! By far, the best Dr of all the 40 to 50 I've met during this ordeal.

She was careful, professional, yet friendly and down to earth...She had fun with all the stories of the different Dr's I've seen and made me feel like she would take good care of me. She went over all the expected side effects and said she can almost guarantee me that she will save my salivary function, for sure post radiation.

She said she is having 90% plus success rate!!! with SCC H&N...

I was feeling like maybe NY would be best afterall...

Then the bad news...

The Erbitux trial excludes IMRT radiation!!!

I can't believe it, but it does.

I asked her what I should do, and she said, well...what did Anderson offer, I said the same study with IMRT. She said "No way...it can't be with IMRT"...I argued with her that surely they would have disclosed this important fact to me.

Turns out, I studied the informed consent forms, the study guidlines and everything. Nothing mentions exclusion of IMRT.

So we paged the Research Nurse.

Turns out the Anderson study ALSO excludes IMRT for use with Erbitux!

What's going on?!?!

First of all, why didn't Anderson tell me this VERY important change? I had to learn about it from Sloan?

2nd, why would they have this limitation when IMRT is vastly superior in so many ways..?

3rd, is there any way around this..?

Okay, so that's the latest.

I'm heading home (to Mendocino) tomorrow AM. It will be good to sleep in my own bed again.

Monday, I meet with a surgeon from Stanford, I want him to check my incisions, etc make sure all is ok.

More than one Dr has looked at the tonsil bed and said that it looks like Dr Fee didn't get all the cancer!!??!!??

I called Stanford to find out who the Dental Oncologist is and they said to just go to my local dentist!?

I need to get my two remaining wisdom teeth pulled immediately (problably under General), so that I can start the two week clock countdown to my simulation regardless of where I decide to get treatment.

So, does anyone here think the promise of Erbitux is great enough to outweigh the benefit of IMRT.

Thanks!!!!!!

With the preface that each one of us is different as far as the site and scope of our disease, I will say that 3.5 years post dx I am here and fine, and I can spit, having been the first person at my rad place to get IMRT. Frankly, having heard how difficult eating is for those who had standard rad before IMRT, I would not go back and change, even if Erbitux had been offered instead back then. So that's my two cents worth.

Where do I mail the 2 cents? (will you take a check) LOL

I tend to agree, BUT, I have heard so many cutting edge pioneers in this disease taking about the promise of Erbitux...

I'll figure out a way to have my cake and eat it too (even if I have to blenderize it after tx starts)

PS: Please avoid spitting in public.

Michael, as far as the dentist goes, don't just go to your local dentist unless you KNOW he has experience treating people with head and neck cancer pre and post radiation. It's hard to get a dentist that's part of a H&N cancer team to see you un;less you've soigned on there for the whole of treatment. or this has been my experience.

I had to ask around to find the right dentist in this town. Fortuntely, my ENT knew of a guy who has treated other poeple who went through rad (he was also recommended to me by other folks as well)and even more fortunately, he is freinds with the ENT so, even though he's so booked he isn't accepting new pts, he was willing to see me on very short notice and pull two teeth that I knew would need pulling before rad. You're right you do need to get that done soon but it's woerth going to someone who will really look carefully at all your other teeth as well and who you can go to for follow-up after and you won't have to fight to get in to see them quickly.

post script - I have to say that much though you liked the general atmosphere at Anderson more, it seems like they really slipped up letting you think you could do the Erbitux trial and have IMRT. I think I would pick the place where the rad oncologist knew those two things couldn't both happen. Sounds like that is the spot where there is better cross-communication between medical and rad. oncology.

Besides, by September, NYC should start to have lovely weather and Houston will still be incredibly nasty

Just my yankee bias showing!

Hi Michael --

I have a somewhat similar choice at Hopkins, was offered a trial of a newer EGFR drug (erlotinib)but since it started using IMRT, they can't change the technology mid-study, so if I opt for it, I can't have the tomotherapy technology. (probably the issue with your Erbitux trial although certainly IMRT was around when that drug first came out?).

I think you really want IMRT -- the advantages over older technologies are well-established. Is the radiation in Anderson Erbitux trial 3D-conformal?

Course you can always go to Hopkins and do the erlotinib/IMRT trial there! <gr>

Erbitux will probably be FDA-approved sometime in spring 2006, too bad it was not a bit sooner for us so available outside a trial setting.

You should also be sure to see a dental oncologist --

I go in Monday for simulation and more meetings with radiation staff, and dental onc later in the week I think.

Good luck,
Barry

Michael,

I can't give you much of a viewpoint one way or the other on the Erbitux option. However, having been treated in what seems like the Pleistocene era with general radiation, I have slowly witnessed the return of spit over time, with some help from Salagen along the way. (Also, as I understand it, I might not have been a candidate for IMRT anyway because of the nature of my tumor.) My point is that you don't have to assume that your salivary function is gone if you don't have IMRT.

I have to agree with Nelie's post about making sure you get to a dentist that knows how to work with oral cancer patients and can continue on with you post-radiation. There are too many potential complications under these circumstances and you want someone who can be prepared to anticipate them.

Cathy

Does anyone know of a SCC sensitive Dental Surgeon in Northern California or near?

I agree that I want to go to a specialist, and Stanford doesn't know any.

I can always get it done at Anderson, but it will take a week or so, and then we have to wait the 2 weeks after surgeon to do the simulation and start the radiation a week after that, regradless of where I am going for tx.

Barry, I think it I go to ONE MORE cancer center my entire family and Seth would disown me forever.

Although, the EGFR drug combo with IMRT at Hopkins sounds like the smartest choice... :-)

Ah, Michael -- I thought you'd come out to Maryland to see us and help us eat some of this cheesecake (we have now had even *more* food delivered from friends, including a large chocolate cake). I am hiding it as Gail doesn't want to bulk up and the cake is pretty tempting!

Eating everything I want is the only good thing in this nightmare -- we were supposed to leave next week for a month's birding in Australia, dodging kangaroos and cassowaries, and instead I will be fighting a more deadly sort of beast...

Barry

I just want to calrify that I didn't say, nor did I intend to, that you need to see a dental oncologist, though obviously that would be ideal. They are just very scarce from what I understand.

Just be sure you find a dentist who has experience treating other people who have been through oral rad. If you ask around, I am sure there are one or two somewhere in your area. I knew I had found the right one when he asked me with great concern who my rad. oncologist was because he thought there was one in the area who overradiated people unecessarilly. He is just the guy everyone recommends I guess so he gets all the cases in our area. Not that there are hundreds but if he gets all of them he has enough experience to know somehting about what the issues are. His willoingness to undertyand the issue of time urgency in my case was important too!

I wonder why they are waiting a week after simulation to start treatments. Did yu ask them? I had simulation one afternoon and treatments began the next morning. It took aprox. 2 hours to do all the scans and the mask etc. and then they were ready to roll. Did they all say this or just one doctor?
Barb~

Barb, Did you have IMRT? I was told by both the rad oncologist at Dana Farber and the rad. oncologist here that there would be two weeks delay after simulation to program the IMRT so as to do parotid sparing during rad. It actually ended up taking my rad oncologist here three weeks, which annoyed me. Apparently, it's a big job, even for someone who knows their stuff and usually there's a line of folks ahead of you waiting......

I forgot there was more I wanted to add to the post above which is that it could be that I was told that would be the dealy because I was stage II and there was less urgency as they saw it. But the Dana Fraber folks seemeed to think there was some urgency so I'm not sure. I just assumed that was pretty standard after hearing the same delay would occur from more than one CCC.

I just landed at Oakland and will be home in about 3 hours.

I'll give the board an update on all when I get settled.

Thanks as always for the support...

- Michael

The best place to get a referral to a dentist who deals with rad patients is from the rad department. That is what I did, and I could not be happier. Also check with your local dental school for a referral. I say this because my dentist is also a prof there.

That said, any competent oral surgeon can pull your wisdom teeth. The type of dentist mentioned above is for after rad and for the rest of your long and happy life.

No Nelie I am having something different. I had no idea about the wait. My Onco/Rad never uses IMRT for the larynx. He told me why but I didn't understand a word he said. I'm glad now. I don't think I could have waited two more weeks. i want them dead and in a hurry dead no matter how slow they are growing.

Michael I hope you found a good place in your search.

hugs,
barb~

Two weeks seems to be the norm for IMRT (post-simulation) -- in any case, that's what Sloan and Hopkins both told us . Barry has his simuation this coming Monday and they wanted to start tomo on August 1, but we have delayed a week as the med onc folks have still not finalized his treatment plan (not entirely their fault, as we just decided at the end of the week not to do an offered trial as it involved cisplatin). We still have to meet with the dental oncologist and of course his scheduler is out until Tuesday, arggh! If Barry needs any serious dental work (and he might he did have some peridontal disease, now supposedly under control) that could delay things more.

One thing we have learned pretty quickly is not to sit around and just wait until someone schedules a consult or meeting for you -- get on the horn and check up on it. Our not doing that last week has cost us some time, luckliy for Barry not a real issue as his cancer is not moving aggressively, but it could be a real problem for some folks!

Hopkins say they have a "cancer team for you" -- and I agree the players are world-class but the "general manager "(if there is one) seems to be a very casual person about coordination. I am a very organized person, ran a big research program with lots of conflicting things happening all the time and I am getting frustrated at what appears to be simple lack of communication. Arggh!

However, am also a quick learner so come Monday things hopefully will start to happen.

Gail Makiernan

(Barry Cooper's wife) He's stage IV SCC tonsil (removed), b.o.t. and mets to 2 lymph nodes.

I would not have gotten IMRT had my spouse and I not had the forthought to ASK for IMRT. At my first meeting with the rad onco, they suggested and I signed for the Iressa trial. After doing some research on this forum and finding out the difference between the two different types of radiation the IMRT sounded like it would be the best. The radiation onco looked at the study and said we'd do the IMRT.

Looking back at it now, I have no idea if I got the IMRT or not unless I demand my records. They told me that I would be getting IMRT, but from what I could tell, the machines all look alike to me. A couple of times I had to go to a different room with a different machine because the one I normally used was out of commission.

It just seems odd to me looking back six months ago and having to bring up IMRT to the oncologist at a CCC, when it seems that it's preferable for head and neck cancer patients.

Jen

Jen

I have read this thread for some time now without comment. But I wish to make two brief points. It would seem from many comments here that many do not realize that IMRT isn't available to everyone based on the extent of the suspected infiltration of the disease. As a stage four patient, I wasn't a candidate for it, and no amount of demanding it etc., would have made any difference. With suspected tissue involvement even if microscopically small, in a large area of my head and neck, the old standard was considered, for me, the gold standard. Sometimes a greater area of radiation is appropriate, even if xerostomia is a guaranteed by-product. Is a chronically dry mouth a pain the ass? You betcha. But I sure am glad that there were no stray areas of tissue that harbored a few malignant cells living when they were done with me. Especially given that there are so many doctors just now getting up to speed on the new radiation technologies in H&N, unless the primary is small and isolated, there are issues of radiating enough area to a clinical effectiveness that completely irradicates the disease. Also it is not uncommon for the workup for IMRT after simulation to be longer. As I have posted here many times, the radiation oncologist/team has to plan many different aspects of this, the contours of the beams in the tissues, the amount of radiation in each, the duration of the beam in each etc. etc. This is a much more involved process than conventional radiotherapy was, where a few isolating lead blocks outlined the form and contour of the radiation.

I am also struck by the amount of second-guessing that is taking place. Most do not have the luxury of traveling to have multiple consultations, let alone the ability to have treatment anywhere they choose. That someone can go to the kinds of institutions with teams that have proven track records that are the envy of the rest of the world and come out of it still undecided about things, strikes me in a funny way. The abcense of a team being the most obvious. Do any of you think that in a month of traveling around the country talking to God knows how many doctors about things, you are every going to know what the team from ANY major CCC knows - and based on their experience - chooses for you as a treatment? Who that is posting on this board thinks that they know enough about the Erbitux trial and the drugs benefits to decide if this drug - which we do not know the long term benefits or risks of - is going to have significantly better outcomes five years out from those who do not have it? Who knows what the long term negative reactions to the drug are going to be? No one. Everyone here is talking like we are referring to the Holy Grail. When you have been around awhile you will be able to make a list of all the POTENTIAL beneficial new drugs that just haven't panned out in the oncology world. Or perhaps I should ask a couple of patients I know that were in the early trials of the most common drug we now use that are deaf as a result of the doses they received

Wouldn't it be nice if the hoards of "specialists" really knew what they were talking about with their decades of 'experience'...?

As easily evidenced by the fact that not one team has a consensus with any other CCC team, no one way is the right way to treat this terrible disease.

So far, the only tried and proven methods are a disgrace to humanity and have horrible, unacceptable failure rates, not to mention barbaric, centuries old technologies.

I understand the points made by many about all the "wonder drugs" that come and go, but frankly I am willing to take an educated risk if it makes sense.

It's too bad that every team I've seen gives me different prognosis, treatment plans and protocols, otherwise my decisions would be easier and faster.

I am using the healing time post-surgery (when no treatment can be done yet anyway, since I had the surgery just two weeks ago) to determine what I think is best for my long term survival, and hopefully learn more about the right way to beat this dreaded curse.

I am having my tooth extraction done on Tuesday in SF, and expect little swelling, etc since I've had these same teeth removed on the other side with no problems.

I have simulations and mask making etc tentatively scheduled once I have healed from the tooth extraction. (1 to 2 weeks)

IF I hadn't traveled around the country, I would not have ever known to have the teeth removed in the 1st place, since the rad team at Stanford has never even asked me to see a dentist, much less have one on staff.

So, I learned quite a bit in my travels and have a better handle on things then I did before, not the least of which is having the surgery was a BIG MISTAKE. My hope is that my information gathering will be useful to others as well.

Despite the surgeon's protestations to the opposite, the other ENT's I have seen say the surgery was unneccesary, and it looks as though he didn't get all of the primary anyway (or it's so agressive it's grown back measurably in less than 2 weeks post op).

I don't think Stage IV automatically precludes a patient from being a good candidate for IMRT, at least a couple of the best Radiation Oncologists I've seen have said they would prefer to use IMRT if the trials permitted, and this is even after noting the perinural involvement, mets to the 3 nodes, etc.

All this goes to show you that there is SO much left to learn about this disease and even the world's best are very much in the dark.

So much of it is chance, guessing and hope.

Then, when you weigh the possible conflicts of interests, (this Dr in on payroll for this drug company, this school receives grants from this radiation equipment company, etc.) It is not so cut and dry.

I don't have blind faith in the medical establishment and will continue to question everything, with the goal that it doesn't interfere with my success.

This is why this forum is one of the most beneficial resources for anyone facing or dealing with oral cancer.

The strength of this board is in the feedback, responses and input from everyone and I appreciate this more than I can ever express here.

Michael - Your posting seems like you have taken offense to mine, and I did not post with the intention of creating offense. But with all the discussion of IMRT, Erbitux etc. I wanted to make a few points about them in general, and not specifically in reference to your search for the best answers for your own situation. Your thread offered the opportunity to make those points and they were not directed at your decisions specifically. As to the travels and the search; I said it is unusual for someone to have the resources, time, or the determination to search through all the different institutions for answers. By stating that I didn't mean to insinuate that it was wrong, just that we haven't had anyone here have the opportunity to do so before.

Some of the points that you make are valid. But the cancer treatments that we have today, as destructive as they are; such as systemic chemo that poisons more than the cancer itself, radiation that also destroys surrounding healthy tissues, and causes life long complications and more, are the best that there is today. It SUCKS

Dear Brian, Altho I am pretty sure that I can't really express this right, I want you to know that your above post has given me alot of comfort.Since John's diagnosis, surgery and rad tx., I have been struggling daily with guilt. His diagnosis and treatment, including selecting the hospital and surgeon happened so quickly that not only were our heads spinning, I did not have time to do any research and after meeting the surgeon,John's attitude was "don't tell me anything, just get it done" [ however I did find OCF] Since his release from the hospital I have spent many hours here and have been filled with awe, confusion and frustration at how little I know compared to what I read here. Thanks to you, I'll sleep better tonite. Amy

Amy, I appreciate your comments. But sometimes my blunt manner, particularly in print without the nuances of tone or eye contact creates offense, which I clearly have done. Others here are much better at being

Brian: Thanks for the clarification, but no offense was taken and my reply was not meant to sound defensive... BY GOD, we are all on the same team here and the constructive exchange of ideas on this forum (even IF they had been offensive, but weren't) is a crucial element to long term survival of this cancer.

Your perspective is vital to my understanding of this disease and your guidance, leadership and background prove to continually be invaluable to all of us.

Just a single point of clarification, I DID present to the Stanford Tumor Board and MDAnderson's oncologist presented my case to their board on Thursday evening. I am waiting for their plan results.

I hear that the days of the patient being involved in the board are ending due to HIPPA considerations...maybe we'll hear more about this in time.

I echo Amy's sentiment of appreciation for you, and most importantly the collective power of this board!

Hopefully, together we can have healthy discussions on these and many other new frontiers in Oral Cancer for many years to come. I'm going to do my best job to be here for them.

You could always get yourself frozen like Walt Disney until they find a better method. But today - slash, burn & poison is it.

I honestly don't know whether to be impressed or appalled. It almost reeks of shopping for a doctor that will tell you what you want to hear. You are a unique anomaly here - No one has gone to the extremes that you have. But there is a chink in the armor that Brian pointed out. The real game plan isn't developed in a whirlwind visit at multiple CCC's. My, and most others, diagnostic process took over a month from initial Dx to start of treatment and that was with everything on the fast track. The doctors took the time to get to know me personally and design a treatment plan that would save my life yet allow for some semblance of normality afterwards based on my lifestyle and unique requirements. It was more of a negotiation process, the doctors arming me with knowledge about all of the weapons in the arsenal, which were the most efficacious and the risks and benefits of each. I feel very fortunate that I was gifted with that opportunity - many here are not and have to take what's doled out to them.

I am grateful for those "barbaric treatments" because I have had 28 months of survival that I wouldn't have had otherwise -it's always better on this side of the grass. I have had very few QOL issues - in fact life is quite good today.

I asked my H&N surgeon "why me", expecting some dramatic physiological explanation for my survival and he replied - "just plain luck". And I am afraid that he is probably right, even though my faith tells me not to believe in luck.

I hope that you are here for many years because we have all learned a lot from your journals. I hope that ALL of us are here for many years.

Every person that has died here has been a personal assault on my senses - driven me to cherish, even more, each day with the ones I love. I carry on like many others here do - putting one foot in front of the other until I can no longer go on. The older I get, the more funerals I go to - it's part of the cycle of life and a constant reminder that life itself is a terminal illness and quite fragile.

I truly wish the best for you and that the inner wisdom, that is already inside of you, can come forth and guide your path. Your answer must come from within - not one of us.

You look at Brian, Lance Armstrong and other survivors and what worked for them? - find the best CCC, roll up your sleeves and get on with it. I would venture that any one of those NCCN member CCC's will give your cancer a good run for the money.

Unfortunately, patients can no longer be involved personally in the Hopkins tumor board presentations (they say due to privacy issues as other cases are presented) -- however, I've been involved in plenty of proposal review boards (which operate in a somewhat similar fashion) and we just ask the involved people to come in and then leave, so not too happy with their rationale. I would really have liked to have heard all the opinions and discussion.

Having said that, the plan they proposed for Barry (stage IV SCC tonsil, some b.o.t. and 2 lymph nodes same side) follows NCCN guidelines. As with Sloan (our second opinion consult) and as I understand Anderson as well, they start with chemoradiation and try to avoid surgery because of QOL issues (primarily because of that base of tongue cancer). Hopkins and Sloan even proposed same drugs and same scheduling of them re the radiation. As Barry has posted, we were offered a trial with a new EGFr drug but he decided not to do it as it involves cisplatin and they are concerned about hearing loss with him.

He is probably going to start treatment August 8, which is about a month after the tumor board met -- could probably go a week earlier but meeting the dental onc has been delayed a bit (darned summer vacations!) Based on Hopkins' and Sloan's examinations of his CT scans from November and then last month's, his cancer has not progressed significantly so the timing is not as much of an issue as it might be with someone who had an aggressive, fast-moving tumor.

Hopefully treatments for HNC and other cancers will see a real change with the newer approaches (vaccines, drugs targeted to cancer-specific factors which do not kill normal cells, etc). I am a SPORE advocate for Bill Nelson's prostate cancer project in Hopkins Urology Dept. and it is amazing what is on the horizon -- but it's unfortuntately a long horizon. Right now we have to do with what we have --

Having said that., *I* wish we had Erbitux available now in a clinical setting!

Gail Mackiernan

(Barry Cooper's wife)

The thing about the NCCN guidelines are that there is not EXACT agreement even there.

The flow chart shows the 3 main courses of treatment, with surgery still being the mainstay as 1st line (old school and not in practice at the main CCC's anymore for most cases).

But, there are so many opinions out there the NCCN guidelines are a good starting point.

I think the fact that there are so many treatment trials going on at any time shows that there is a lot starting to happen in this previously neglected area of medicine.

Hopefully, we will all be around to see the improvments reach the point that they have for many other cancers such as lymphoma.

I hate to sound skeptical and jadded, but looking at the HUGE institutions that make billions of dollars on treating cancers, it makes you wonder how motivated they are to find a "cure".

The one's that really are motivated to save people have a genuine passion, and when I've met these shinning stars they stand out from the rest.

Maybe that's why I wanted to compare them and get a sense of their commitment.

Michael,
for the instutions to qualify to be a NCCN member they HAVE to be conducting clinical trials and other basic research to find a cure for cancer. Believe me, if they could find a cure for cancer just think of all the money they would make on geriatric care. There has been an urban myth circulating for years that the big boys are holding back on a cure because they make so much money on treatment but it ain't so. There is not one scintilla of evidence to support this. Problem is, it is more of a medical art than a science and there is disagreement many times in the NCCN guidelines, and it is clearly stated. Further compounding the problem is that all of us have a unique spin on the disease and there is no formula treatment method - but the NCCN guidelines are of result of all 18 or so member institutions inputing what works for them. This is the best there is to offer right now.

So you are a stage IV, have already had a MRND and you have 3 involved nodes -what is there to decide? Radiation and chemo are your best shot to stop a recurrence which could be a major problem. Late stage cancer is ALWAYS a multi-modality type of treatment protocol. Chemo, by itself, has yet to be proven effective in H&N. Today it is merely an adjunct to the radiation and (specifically Cisplatin) gives as high as 13-16% better odds for survival over radiation alone.

Iressa showed great promise until they did a large double blind study (phase III) and found the placebo to be more effective. These are the kinds of studies going on with Erbitux right now. They just don't know yet why iressa, for instance, was only effective 10% of the time. Although that 10% had a very dramatic result. My gut tells me that they are close to solving this. Do you think that all of us millions of baby boomers want to end up with cancer? We solved the hair thing, the ED thing and now it's the big C - aren't you glad that they have their priorities straight.

But that doesn't solve the immediate dilemma. I went to UCSF because the RO there is considered the best in the US. She's also a clinical professor of radiology. They see a lot of H&N patients at Mt. Zion. If radiation is your issue why didn't you try them?

Your dilemma is almost as bad as picking out aspirin at Longs drugs. There are just two many choices. One thing for sure - there is very little room for mistakes in late stage so choose very carefully. Your focus has to be on survival number one. QOL has to take the backseat.

I am sorry if my previous post sounded a little harsh on you - I was just sharing my feelings and not judging you. If I were your shoes I may be doing exactly the same thing. I did a lot legwork researching my team and had complete confidence in them - but I was a pain in the ass - asked a million questions, had to have ALL of the reports, test and scan results, etc.

Thanks Gary... trust me, I know that you and Brian only want what's best for me, and that includes starting whatever treatment I chose ASAP!

I am going to UCSF to have my 2 wisdom teeth pulled, (since it must be under general), so I'll ask for a consult with their RO.

Last time I spoke to her (Dr Bucci?) she was very optimistic about me having a total cure, saying their 3 year cure rate was approaching 85%!

As always I appreciate the comments, direction and ideas!!!

"with surgery still being the mainstay as 1st line (old school and not in practice at the main CCC's anymore for most cases)."

Michael, this really rubbed me the worng way. As Brian pointed out, you have had the rare luixury of speaking to several docs at two of the major CCCs but do you really know enough about what is practiced at the main CCCs in all cases to make this statement? When I went fir an opinion at Dana Fraber, like you, I had already had my surgery. But they would have recommended I have surgery first if I had gone initially. They are the #4 CCC in the country.

One difference between me and you is my cancer was on the upper tongue and surgery was not likely to produce extreme problems that would have hurt my quality of life such as being unable to speak or swallow--whereas my udnerstanding is often cancers on the lower tongue or tonsils have potentially many more complications. So maybe that's why some of the other places told you they would do rad and chemo first and only use surgery after if needed.

I'm certianly no expert either, but I suspect whether surgery is considered to be the first line of attack varies based on a number of factors, even at the major CCCs, which is why the NCCN guidelines are written the way they are.

Hi Michael,
I am appalled to hear that the surgeon at Stanford did not get all the cancer. Did he give a reason? Did he tell you this was a possibility going into surgery?

Also, you said some of the doctors you saw at Anderson and Sloan said you should not have had surgery. Were these surgeons or ROs? Did they give you a reason?

I find it very interesting that they are now doing trials with Erbitux alone. Back in 2001 when I had cancer the second time, the only trail available for me was with chemo and rad. Since back then, you couldn't have any more rad., I had no alternative but surgery.

Hope your mouth isn't hurting too badly today from tooth extractions. Make your decision soon and get your treatment started ASAP, especially now that you know they didn't get it all.

Take care,
Eileen

Just a quick addition to this thread --- when we consulted at Sloan, we were specifically told that they do not do surgery first, and in fact, try to avoid it after chemo/rad except where absolutely necessary. Now this was in relation to an advanced HNC -- I assume that someone presenting with a stage I or II which can be addressed by a localized surgical procedure would be handled differently. They also said Anderson did things the same way.

At Hopkins, we got the very strong impression that surgery first is only favored by some of the surgeons (which would be expected) and then not for cancers involving the base of tongue or areas where there would be serious QOL complications. Our med onc said that surgery is "controversial" within the HNC group because of these QOL issues.

It does appear that approaches are evolving and probably when some of the new, more targeted drugs hit the streets they will change even more. This follows the pattern of other cancer treatments, e.g. breast cancer...

Gail Mackiernan

Nelie:

I can't speak about "all cases", I can only say that in my case, I was told by several ENT's, RO's and MO's that surgery would NOT have been their choice of 1st line in my case. Several also said that "surgery is not our usual first line in cases like (mine)...", and that sometimes surgery is used for "salvage", post tx.

Even the surgeon I saw yesterday at Stanford states that he thinks the surgery was not the best choice for 1st line.

But, today, I am nearly 100% functional post-surgery, so I guess I am not complaining.

There could have been serious complications, or QOL issues, but my surgeon was really good at what he does, which may be why he advocates surgery first so much...I don't know.

I do know, that the pendulum is starting to swing the other way, and the old routine of cutting first and asking questions later may be shifting too.

As you problably know from your fight with breast cancer, that not too long ago, the standard of care for breast cancer was radical mastecomy, whereas now, these are rarely performed, in favor of lumpendectomy.(sp?)

I wrestled with the paradox of surgery first for a couple of weeks, and finally decided in the interest of time to get it overwith.

I didn't want to "start all over" with some other team and waste another 2 weeks.

Now, I am glad I did on one hand since I got useful pathology information that I would have otherwise not known, and debulked the cancer from my body.

THE GOOD NEWS is!!! that the surgeon at Stanford said he thinks the remaining tissue seen by the RO's is most likely scar tissue, kerantized(sp?) tissue, etc, and not neccessarily cancerous cells. So, I am relieved by this and am hoping he is correct.

Nelie,

From what I've read in your posts, I think your tumor and mine were similar in a lot of respects, and the tumor board reviewing my case was quite definite about surgery first, then radiation if needed. While this was 16 years ago, I don't know that it would be any different today under the circumstances, and after all these years I've had no reason to second-guess that decision. In fact, I'd have to say, all things considered, that my QOL now is just about the best it has ever been.

Cathy

Truth is, medicine moves very slowly..

I don't think much changes over just 16 years.

It seems to take decades and millions to get a new drug on the market, and even then we get things like (dexfenfluramine) and Pondimin (fenfluramine), Vioxx, and Celebrex.

That's not entirely true. In the past 16 years they have invented 3D conformal, IMRT, PBT, PET (PET/CT) and MRI scanners that actually work, it was about 15 years ago when I got the first FDA clearances to market for 3D algorithms for use in CT, MRI and Ultrasound. Image fusion, R2 Imagechecker for automatically and with artificial intelligence, scanning and indicating ROI on mammograms, Brachytherapy, the Cyberknife and come up with an antiemetic that actually works (Zofran for one). Chemo cocktails. They understand a lot more about genetics, the virus link, EBV and HPV. We are on the brink on having successful monoclonal antibodies and EGFR drugs. There is no way I would have wanted cancer 16 years ago and I admire Cathy mightily for having gone through the treatment back then and surviving. As a society we are finally doing something about smoking (I favor an international ban on tobacco products) which will have a huge impact on the cancer death rate.

These are exciting times from a technological standpoint.

We have seen the death rates from breast and prostate cancer plummet dramatically. And Brians working on the H&N numbers as we speak.

Now considering that the 2 main forms of death are heart disease and cancer, when they improve the odds for one they lower the odds for the other and it continually see saws back and forth.

We have come a long way since they were sawing peoples legs off without anesthesia in unsterile, crosscontaminated conditions (1860's) and it was only a few years later that the first successful treatment of a head & neck cancer patient was performed with a radiation source at the Curie Institue in France.

Life is a terminal illness - none of us will get out of here alive, you only have this moment - savor it.

Gary,

One of the items in your long list of medical advances raised a question with me. You listed brachytherapy (which I had 16 years ago at the end of my radiation treatments, so I'm gathering I may have been on the front end of that one). I've only seen it mentioned sporadically by current/recent patients on this site, and it seems as though it may not be used routinely. Is that because it's not widely available, or because it's felt to have limited applicability? (Or is it actually used more often than I think it is?)

Cathy

I overlooked the "technologically speaking" medical advances, sorry.

Although, the basic technology (Xray) was invented in 1896 and won the first Nobel prize in physics in 1901.

I just wish that medicine advanced as quickly as our cultural passion for fighter jets and Pentium 16 computers.

And this comming from a computer geek pilot too. :-)

Cathy,
I honestly don't know why brachytherapy isn't used more often. If I remember right it too was originally developed for a prostate cancer treatment. They have a new type where they plant the devices then charge them up

I'm guessing here but it may have to do with hazardous waste disposal. These things will end up in 55 gal drums somewhere in Nevada.

Gary,

I was acutely aware of the hazardous waste thing -- right after they did the implant, they wheeled me into the hospital room where I was to be quarantined, and a guy showed up with a geiger counter to measure the radiation in the adjoining rooms to be sure I wasn't contaminating them. Then they slapped the yellow and black nuclear hazard sign on my door. (Since I've spent a fair amount of my career doing work for nuclear power plants, I saw a certain irony in that.) :p

Cathy

Irony indeed! Amy

Hi Gary, Cathy,
An article in the news section seems to indicate that brachytherapy is more successful with early stage cancers. See
http://www.oralcancerfoundation.org/news/story.asp?newsId=285

Could be that it is not used as much as standard radiation because, as we are all too aware, most oral cancers are diagnosed at later stages. - Sheldon

This is not exactly on topix, but then neither are the last few posts, so what the heck...

I found the following Amgen drug info and wanted to ask if anyone here has used it and can report on it's efficacy.

Here's the link:

http://www.amgen.com/medpro/disease_condition_kepivance.html

http://www.kepivance.com/

just wanted to let you all know that tomorrow I go to the hospital for the tooth extraction.

I will be gone all day, and likely admitted overnight due to the general anesthesia.

I started taking Neurotin today for the "pins and needles" and it seems to be helping a little. We'll see.

I have almost firmly decided on NY after several conversations with the RO there.

She is great, and I feel really good about her, so I figure why not..?

Now, I'm working on housing there...that's gonna be as tough as fighting cancer :-P

I'll post my final decision after I recover from the oral surgery.

Hugs and love to all...

- Michael

Quick update:

Got the teeth extracted just fine at UCSF.

They were VERY professional and did a good job. It was as painless as a tooth extraction can be, and they did a good job with infection control, operating room proceedures, and patient comfort.

The sockets are healing just fine, and I've been able to avoid taking any of the pain meds so far.

Right now, Seth and I are at SFO waiting to board for JFK. I am seeing the dental oncologist at Sloan tomorrow AM for my dental guard (is that what it's called?) and then my SIMULATION!!

I'll be meeting with the RO while there, and the ENT and Oncologist too.

Then Weds, back to Mendocino for a week or so while they work on my tx plan for radiation (IMRT).

I'm going to skip Erbitux for now, unless the oncologist will rx off-label. I figure I can always use it later if needed, and the results are looking more and more sketchy.

I have an appointment with the VP of R&D for Imclone, the arm that developed Erbitux while in NYC. He's agreed to see me for a moment, and I am going to discuss what he thinks about my plan.

I am also going to voice my dissappointment that the trial uses standard X-radiation instead of IMRT and see what he says...I suspect it has more to do with a college or hospital board making the decision, but we'll see.

That's it for now...I'll post tomorrow with an update.

I hope everyone here is well, and send my best wishes to all!!!

- Michael

Michael I am curious as to your severe chest pains, the huge sore on the back of your tongue, the extreem pain in your scapula and the large node under your arm you spoke of on another message board. What are they saying about that? Have they checked it at all?

God bless,
Barb~

Hi Barb!

Chest pain is resolved (for now), I think it was pluresy (sp?), the sore is gone now, and scapula pain is not there anymore.

I have NO other known nodes swollen anywhere (especially the right neck )

I think most of these were stress related, and the only one of serious concern to me, was the chest / scapula pain for the ever present fear of metasisis to my lungs.

But, since I haven't felt anything in a while I think it will be ok.

I'll ask the ENT that I see today about it.

Thanks for the concern...How are YOU doing???

Is this weird, but I am acutally excited about starting treatment? (a litle anxious too)...but it feels good to finally be getting to this stage. Did anyone else feel this way?

Just wait until the 2nd week, when I'm sick as a dog, please, remind me about the feeling I have now :p

Do you really start RAD/Chemo treatment on a Friday ? I remember my Dr. said he never starts treatment on Friday, because you would wait two days for the next RAD.

Michael,
I lost your email on my account,
Just wanted you to know Ive been checking here for your latest news. Cell service is horrible here in Mo. Will be home tomorrow. Just want you to know you are in my thoughts and prayers.
Love, September

Mine starts treatment no later than Wenesday. How am I? Cancer sucks. My neck looks like its been torched. My throat is full of glass. My doc asked if I wanted to skip a week even though he does not recommend it and I said nope go for the kill!

Little does he know I have suffered far more physical pain in my life and lived to tell the tale. Plus God is on my side giving me strength and comfort all the day through. Thank you God.

May you be blessed,
Barbara~
10 to go!

The EXACT date is not set, but I'll ask the RO about the Friday issue you mentioned.

My simulation is for tomorrow at 10:00 AM.

I just got back from Sloan where I met with the dentist there.

I DO have a quick question for the board (hint hint Brian are you there?)

Q: The Dr at MDAnderson said floride trays are the only to go (for life!). The Drs at Sloan said floride (Rx) toothpaste (1x brushing daily) for life is the best way..Which one is statistically best?

Also the dentists at Sloan want me to have two teeth with minor carries filled. They said I can do that this week or next with regular metal fillings. Shouldn't I use porcelin(sp?) or other non-metallic? And, does it matter if I get them only a few days to a week prior to start of radiation?

Ok, guess it was more than ONE question...Sorry :-)

The sockets hurt a little more today from the Friday extraction, but still no swelling, fever or serious pain.

WZ, did you have radiation & chemo???

For what its worth -- just to confirm that there is not always consistency in advice-- Barry and I were at Hopkins today meeting with dental oncologists and they use the trays and advise using the fluoride gel forever . They also advise using the trays during the radiation (without gel, I assume). This supposedly helps with scatter from fillings. Barry has a lot of crowns but they said his teeth were all sound and he didn't need any work. Thank goodness.

He will have a exam two weeks' after start of treatment to look at salivary function and any problems developing. They use a newish drug (Evoxac) to stimulate salivary function even during treatment if it appears it will help.

Tomorrow meeting with chemotherapy team and doctors again...

Gail

John had 1st 3 days of rad. and then 4 days off because of Memorial weekend. Go figure. Amy

Hi Michael,
I've been away for a few days. Glad your extraction went well and you have decided on a treatment center. I too was very glad to get treatment started. Wanted this thing killed as soon as possible.

I had XRT not IMRT and they pulled every tooth that had a filling in it, so I lost all my rear teeth, but that was back in the dark ages. My current dentist/prosthodontist, who specializes in cancer patients, uses no metal in my mouth. I'm not certain what the substance is that he uses to fill the teeth, but it is not metal.

Fluoride trays are not that expensive $400 or so. The fluoride is cheap. Is there some reason that they don't want you to use both the toothpaste and the fluoride trays. You don't sleep with the trays. You put them in your mouth for 15 minutes and then don't drink anything for 1 hour. I use them in the morning while I shower. I think the toothpaste has a higher level of fluoride that my Gelcam so that may be one reason they prefer the toothpaste. Also the Gelcam stains my teeth something awful. Much worst than when I was a 3 pack a day smoker.

Are they going to put you on anything to protect your saliva? If this hasn't been discussed ask them.

If you are meeting the VP from Imclone in NJ headquarters this week, I work about 20 minutes away. Send up a smoke signal or email.

I hope everything goes well for you. Eat up at all those good restaurants on the East side as long as you can. Hope you found a good place to stay.

Take care,
Eileen

Michael,

I had 9-hour surgery (tonsilectomy + RND), 33-radiations and 7 concurrent chemo (weekly cisplatin). 10 days before the radiation, I had 4 teeth pulled. During the radiation, I had a real bad infection, I was hospitalized to release the abesess (sp ?). The infection forced me to stop treatment for 9 days. My throat won't heal for three months, then Dr. ordered Hyperbaric Oxygen treatment.....

Many infections/inflammations I could not remember due to my allergic reaction to the plate in my jaw. After Dr. removed the plate 12 months later, everything took a good turn.....

I was 38 when diagonsed, now it has been three years.

You are in my preyers


WZ

Hi all,

Besides the "Gel-Kam", another good thing for the trays is "GC Tooth Mousse, a topical cream with bio-available calcium and phosphate", available through the dentist. Good for extra toughening. This is an Australian invention I believe, and made in Japan. Here it costs around AU$20 (with our dollar nick-named "the Pacific Peso", it should be cheaper up there!)

I also leave the trays when showering - saves time, whatwith all the other things you have to do

Cheers!

Tizz

My trays costs 200 dollars in California where everything is more expensive. The flouride I use is prescription and pH neutral. It is Bultler .9% Neutral Flouride Topical Foam - MUCH better than the OTC stuff. Oral B also makes one (both of these are a 5 minute treatment). Your dentist should be able to set you up with it. I also have 4 flouride treatments a year with more potent flouride 1.8%). I have lots of crowns and fillings and haven't had much in the way of problems. I had IMRT and only lost one parotid gland so most of my salivary function has returned, although it took about 18 months. I didn't take Amofostine and the RO said I probably would not need it anyway. Metal fillings shouldn't make much difference.

The stuff Tizz mentioned probably isn't available here because it would be prescriptive here and would have to be approved by the FDA. Check with your dentist.

Some people have talked about "side scatter" from the gold in crowns. I put cotton rolls between my teeth/cheeks and teeth/tongue and I think helped it a little. They have mouth guards also.

Some people react worse than others - what will be will be.

Are you getting chemo too? If so be sure to get the chemo after radiation - not before. If you are getting Cisplatin, your firat infusion should coincide with the first radiation treatment.

You need to ask what the total dose will be. 72 cGy is the minimum amount and 81 cGy is the maximum (AKA "Boost")

Hi Michael,

I use both the prescription fluoride toothpaste and fluoride gel in my trays. Although I have some fillings I didn't have to have any dental work done prior to treatments and didn't experience any problems with these fillings during radiation (XRT). My trays cost 250 dollars so, Gary, I guess California and New Jersey must be charging about the same!

Hugs, Nancy

Great information guys!

I KNEW this would be the place to get the best info :-)

We are returning home this morning via JFK.

Our visit was a short 3 nights, and I got to see my Medical Oncologist, the head of their ENT Dept, and my Radiation Oncologist.

We took MRI's and did my simulation.

I also saw their dental team, as mentioned above.

The MRI was a grueling 2.5 hours and I couldn't move my face a millimeter. My face is so big, the "cage" didn't go around it, so they had to remove the little pad that goes under your head. So there I was for over 2 hours the back of my already tender skull resting on a cold hard surface. By the time it was halfway through it felt like my head was onfire with pain. My hands fell asleep and my butt hurt

Hear's a quick piece of advice for anyone having H&N MRIs:

1) Don't drink coffee or other fluids prior, and empty your bladder just before!

They didn't tell me this, and about an hour into it, I had to pee like a race horse! They said, if they let me off the table, they'd have to start over from the beginning! and that would mean rescheduling for another day!!! (We fly out this morning)

So, I just held it, but it was the worst part, by far.

I hate to sound like such a big baby, I mean after all, it was only an MRI, but if someone else can avoid this discomfort by just following the above advice, it's worth mentioning.

I scolded the MRI team that they should have advised me of the length BEFORE I got on the table.

That's it for now.

I had my simulation yesterday, and it went ok too.

Same head/skull/fire thing, but it's over now.

My face looks like a belgian waffle...(MMMM, I gett'n hungry now!)

I'll post more when I get home tonight...Hope everyone is good out there!

Treatment will start August 10th, so we'll be back around the 8th or so.

Hi Michael --

You and Barry start treatment on the same day -- we will be thinking about you! Luckily he had a good MRI series done before his tonsillectomy and this was sufficient -- it was in a new high-field open MRI here in DC and though we were warned "they will want to re-do it as open MRI's aren't as good as closed systems" they found the quality to be excellent. (Good thing, too -- Barry is pretty claustrophobic and the only way he could do a closed MRI is to be sedated -- me too...)

Are you getting a gastric tube? He will, although not at all happy about it, but since he is getting neck radiation as well as base of tongue, the Hopkins crew feels he will need it. Although he has managed to pack on about 12 pounds since July 5 when we went up to Sloan, the nutritionist felt he would just lose too much weight without supplemental feeding when his mouth/throat start to get bad. Dehydration is also a big concern as he's getting amiphostine and has to drink 24 oz. water before getting the drug.

(I am proud to say I have resisted the cheescake, cashews, ice cream etc. and have NOT gained any weight in last two weeks -- but it has been tough! <gr>)

We are now through with all the consults and workups and plan to take off for some few days to get away!

Good luck,
Gail

(Barry Cooper's wife)

Barry: Dx 6/21/05| SCC| Right tonsil and 1.4 cm base of tongue| 2 nodes right side| Stage IV, T3N2bM0| tonsillectomy 6/21/05, negative margins except at b.o.t. area|chemo carboplatin 6x, 7 weeks tomo radiation commencing 8/10/05.

Michaelii, will you be taking Ethyol to help with the saliva? My dad is going through his IMRT and Cisplatin now-he's down to get the surgery you had in June in Sept. So, we'll give you hints on the chemo/rad and you can give us hints for the surgery-deal? My dad noticed that his mask is getting tighter? Does the radiation cause swelling or could it be the fluid shifts for that day? He has had NO adverse reactions to the Ethyol.

Ugh! I know how you feel. I never got a pad for my head when they made my mask either. They are much improved over the old ones I think. Did they nuke yours first? Is it tight? How did they do your nose?
I am almost done. 8 more. whooohooooo Its good since the skin is breaking down on my neck and I am now wearing the jelly pads. TG for jelly.

Blessings,
Barb~

Barb, is that Strawberry or Blueberry Jelly?

(what is with me and food lately?) :-)

They didn't nuke the mask, they soaked it in what I presume was a solution of warm water and who knows what else.

It seemed to get tighter and tighter and tighter as I lied there, but not horrible. It was a yellow, plastic like net mesh material, so they only cut a hole for the bite block I had in my mouth, which they made moments before hand.

Incidentally, the whole time I was simulated I had this feeling that the new bite block; (like an oversized plastic tongue depressor that's hollow in the middle for breathing), was not lining up with my teeth impressions properly. But, I couldn't move or talk so I couldn't tell them.

Turns out, afterwards I put it back in, and sure enough, it had been upside down the whole time!

Oh, and the hollow part, I didn't figure that out until over half way through. Prior I was nearly gagging trying to breath around it and through my nose, and by accident I noticed I could breath "through" it.

Anyway, Shawna, I've never heard of Ethyol, what is that? I'll ask about it too. I have read that radiation does indeed cause some swelling, and I imagine it has something to do with the fluids and possible tissue damage, but ask the Dr. My mask kept getting tighter just in the hour or so I was in simulation, in fact, towards the end I could feel my pulse in the mask, and it seemed to get tighter and tighter in synch with my pulse...wierd huh..? :-) But, it's MUCH better than what I've read the horrible plaster masks were like.

Gail, YES, I am getting a "G-Tube" also. I resisted it, but as the Dr put it, better to go through a little discomfort now, even though possibly unncessarily; than to go through a lot of discomfort in 5 weeks, necessarily. So, I'll be getting my Borg implant too.

Now, all I need is the Port-a-cath and I'll be wired for sound!

[quote] (I am proud to say I have resisted the cheescake, cashews, ice cream etc. and have NOT gained any weight in last two weeks -- but it has been tough! <gr>) [/quote]---What is this? We should relabel this the "Food Channel"

Anyway, it's good to be back home, albeit for only a few days.

I can't imagine how good it will feel to return home after two months of sweltering New York stinch, burning and poisoning. Guess I'll use this memory as inspiration to get it done and back home.

Tizz: I'll look into the "Gel-Kam"and "GC Tooth Mousse" (Does that come in chocolate?) ...thanks.

Yes, Gary, I am going to be getting the chemo too...Cisplatinum...I'll try the cotton ball idea also.

I don't know what "level" I'll be getting, I suspect that will be determined during the workup following Tuesday's simulation..?

I'll like Nancy's idea of using both, at least for a while...Do you guys think I can use the trays even on the days I get radiation (not during of course), or will the pain be too intense?

I'm going to the local dentist tomorrow for a cleaning and at least two fillings...Still don't know what kind to get??? Metal I guess.

I'll discuss this with the local dentist (although he's problably only seen a handful of cancer patients).

As always, THANK YOU ALL for everything!!!

- Michael :p

What IS your protocol? - Cisplatin would "only" be 3 +/- 1 infusions - I don't think they would put in a port for that.

If you have a bite block you may not be able to use the cotten rolls.

Be sure to bring some good tunes with you - All of the treatment rooms I was in had stereos. Music was an important part of my treatment routine (I played mainly thumpin' Gospel & Christian). Never had an issue while on the table. I had them give me a blanket and they should automatically give you a pillow or bolster for your knees.

I didn't have any swelling, very little skin damage although they warned me of some "texturing" in the muscles afterwards. Thyroid is normal. My overall issues now are very minimal (thank you IMRT). It took a good part of 2 years for things to settle in.

Hello Michaelii-Ethyol/Amifostene is used to :"reduce incidence of moderate-severe radiation-induced xerostomia in patients undergoing postoperative radiation for head/neck cancer where the radiation portal includes a substantial part of the parotid glands" (Micromedex)
My dad gets a subcutaneous injection daily before radiation. They have to monitor Blood Pressure-he is young-does great with it. Ask them-

I feel ripped off, my mask was only a dull grey color and my mouth piece had no hole in it so i had to breath through my nose. But i did get a head pad :-P
They heated my mask in hot water then stretched it over my face, the first few seconds were kinda freaky then when i realized that i could breath through it i calmed down.
Michaelii, good luck in your rad tx and we are all here pulling for you and to help with any advice you need :-)

Ugh. They nuked my mask, laid it on my face, pulled up the nose and it was dry in 3 minutes tops. Of course when treatments started I had the head pad and the bolster under my knees.
As for my "jelly" I don't think it has a flavor. hahahahaha As for my music in treatment its Janis Joplin and Stevie Ray.
Blessings,
Barb~

Gary, my cispl. is only 3, maybe 4 infusions, so no port is planned but my veins are not real easy to hit, so maybe..?

BobGrey, thanks for the encouragement...Grey would have been a better color, it would have matched the color of my hat better ;-)

PS: Barb, what are you down to ..?

Just 7 or 8 ?

YEAH!!!!

THe port is a surgical implant. They'll find 'em -the folks in infusion are usually pretty highly skilled. I responded so well to treatment they shortened my infusions to 2.

Yeah, the "surgical" part of 'surgical implant' is the reason I've been reluctant.

I'll avoid one if possible...We'll just have to see.

Sometimes I can still "feel" one of the drainage tubes as if it weren't ever removed, so I am not looking forward to how weird the G-tube is gonna be.

Well I have 6 left. Sorry to say they are thinking of making me take a break because my neck is a mess with the fat oozing right out of it. Its pretty nasty. They said no treatment Monday til the doc sees it. I usually see him right after treatment but they said not Monday gal you are seeing him first!

Man I just hope it heals up some over the weekend. I doubt it but I am hopeful. Take it one day at a time Michael. Never look back and never look ahead. Today is enough to deal with.

God bless,
Barb~

Barb~

Is there ANYTHING they can do to help with the neck healing???

Surely there are topical treatments that would help?

What kind of Dr are you seeing??? A dermatologist I hope! Especially one with oncology training...

Be agressive with them...There has to be SOMETHING they can do.

Michael,
I think you had better ask for something stronger than the GelCam for the flouride trays. Gary or some suggested Butler's. While I use the Gelcam religiously, I am still going to wind up eventually having all my remaining teeth capped. I am going to call my dentist when I get back from vacation and ask about Butler's or something stronger also. I'm tied of making him wealthy.

Take care,
Eileen

Good points Eileen...

I just got back from the Dentist! UUUgh! If ONE MORE PERSON has his/her hands in my mouth I'm gonna scream!!!!!!!!!

I am so sick of Dr's offices I can't tell you!

Anyway, he did FOUR FILLINGS! All resin, he argued that resin is the best, who knows?

I guess the dentist in this little one horse town knows more than the entire Dental Oncology teams at MDAnderson and Sloan :-) They said metal is fine.

I think I like the resin better, I just hope it's ok for radiation, long term holding power, etc.

Then, I got a DEEP CLEANING...UUUGH! My poor mouth!

Frist the radical tonsilectomy, then 2 wisdom teeth extracted, now 4 fillings and a deep cleaning...AND the worse part (radiation/chemo) is yet to come...

Hope I can get through it...The pain from last Friday's (1 week ago) extraction is still bothering me...I feel like a big baby. People get teeth extracted all the time and it doesn't hurt a week later, does it?

Now my gums are bleeding from the cleaning and the lidocane is wearing off...the injection points are starting to throb with pain...

Guess I'm gonna go hit the Vicadin bottle...or maybe Tylenol 3 w/Codene...or maybe Ibuprofen ''600's...or maybe Tylenol XR...or maybe.........

I just went back and reread some of my early posts.

I wanted to take a minute to THANK everyone here!!!

It was ONE MONTH AGO that I had my surgery.

I was frantic about the effects of the surgery, and to be honest, I've been serving guests breakfast since 5 days after the surgery. I've been greeting people, talking to people, and out in public...

NO ONE notices unless I point it out. I do still have a little swelling on the Left side, but not horrible, and getting better everyday.

I remember being scared to death of what the surgery would do to me, make me into a troll, or hermit, but honestly, It's not that bad, and it has only been 1 month TODAY!

Anyway, thanks again...I know we've discussed the pros and cons of having the surgery, and today, I am genuinely happy I did it, and had a talented surgeon.

I have full funtion of my arm, and even my smile seems to be returning...

All this positive commment and I haven't even taken the drugs yet

.K., I'm making an assumption here that peg tubes and G tubes are the same thing.If that's wrong, someone please correct me. And even tho I'm not the one with the PEG,it doesn't seem to me that it is such an awful thing. I thank God every day that the surgeon put John's in during the tumor surgery. It is keeping him alive as we speak. Michael, I remember you "loving New York" a few posts ago. Don't get too down on us now. Think of those glorious waves coming in to the shore- time after time after time. You can do this. Amy

I have always assumed PEG tubes and "G" Tubes are the same...Maybe like PIK lines and HICKMAN Lines are virtually the same things.

I am not 'down' at the moment...I feel pretty good, except for the various pains in my mouth...but none of these will kill me, and all are temporary

The high here was 68 today...It is SOOOOOO beautiful! NY is having another heat wave...If this 2 months of NY in the summer doesn't get it out of my system, nothing will :=)

I remember thinking how great it must be to have radical surgery and be up and about so fast. You were lucky. When they did the surgery on my larynx I was to stay basically in bed for a week, do no running around as to make sure it never started bleeding and I was on a liquid diet and pain meds plus nausea pills, steroids and antacids.

You lucked out in that one buddy. When you have teeth pulled you need to rest not run around. Do I have to ground you again? hahahahahaha Years ago I had all my teeth pulled but five all at the same time. Afterward I came home and cooked supper that night for my kids and my hubby.

About ten years ago I had two loose teeth and was broke as a dog so I sat at the kitchen table, downed 2 double shots of JD and had my sons friend pull them out with the pliars. The first one flew out and bounced off the ceiling and the kid almost fainted. His eyes were as big as plates. hahahahahaha

Hows that for the laugh of the day? Oh by the way I am a tough old broad don't cha know? hahahahahaha

Bless you,
Barb~

good to see you're getting back to your ol' self Barb.. :-)

Not much new here...

Teeth are MUCH better today!

No real pain in the wisdom teeth sockets, or the fillings.

Slight "cold" sensation in the new fillings, but gradually resolving.

Some pain from the injection sites, but not bad.

Other than that, running around the lodge like a crazy man trying to tie up all the loose ends before we head East for 2 months!

I can't believe we are leaving this place for 8 weeks...I'll be worried, but oh well...once the side effects kick in, I'll be like: "Stevenswood, who :p ??"

Great news about your surgery. I have to agree with Barb, you were lucky. I am 3 months out from my neck dissection and I still do not have full function of my right arm. It is better (I couldnt lift it at all for the first 3 weeks), but still have some discomfort and trouble lifting at the end of the day.
I also was scared of the surgery. I was so afraid people would look at me like I was a freak for having a big slit accross my throat. You are right, no one notices unless I point it out.

Michael,

I just got back from a 2 week vacation, caught up on your posts and although I really would not have been able to comment about your radiation, chemo etc. I would have told you to go back to the surgeon that removed your wisdom teeth. It sounds like you had a minor dry socket, but it appears to have healed as your pain has gone away. It may possibly come back, so keep that in mind.

As far as the fillings are concerned, either silver or white composite will be fine.

Good luck on the 10th.

Jerry

Yes, the DDS at Anderson thinks so too.

I think mainly the pain I associated with the Wisdom tooth extraction may have been just pain that area due to all the injections of lidocaine. He must have shot me up at least 20 times and moved the needle around in an effort to get it into the nerves.

So, the sites themselves didn't have significant pain...does that make any sense?

Should I schedule a followup visit? What is the tx for "dry socket" and do you think the local dentist I just saw on Fri to do the 4 fillings would have noticed the "dry socket" if I have that in either site?

Thanks!

Michael,

I work for a dentist. Is the pain really bad like a toothache or just sore? A dry socket is painful. The tx is just usually a medicated cotton ball in the extraction site.You may have to go back a few times. But I think it may be sore from all the injections like you said. That can happen.Also can be sore from the Root Planning & Scaling (deep cleaning). If it continues I would definately call him for a quit check before you start rad.?chemo just to be sure there is no infection. My friend Rod had to have all his teeth removed just prior to tx. This was very rough for a 37 year old guy.I know this is very hard on you but remember sometimes, someone else has it much worse. Just think, after this is all over, you will have a beautiful smile to show the world!You can do this Michael!!! Rod was the biggest baby that ever lived(and he knows it)he was stage 4b...it was one year on July 12 that his treatment ended.He got a great check up... Life is good for him right now! Have faith & fight this Sh** as hard as you can!We are all rooting for you!God bless!Maureen

I had (have) a port because I had amifostine shots every day of treatment (until the last couple of weeks when we went to every other day). If you are just getting the three chemos it would probably not be worth it. Getting one is a surgical procedure--they do knock you out-- though it's very fast and doesn't hurt much at all after the surgery. Its worth it if you are thinking of getting amifostine or any other daily kind of injections.

Michael,

A dry socket typically starts 3 days after the removal of the tooth. It manifests itself as a radiating pain and usually occurs with lower wisdom teeth. It will travel from the back and radiate to the front area around the chin. The pain is usually pretty severe. This is the typical case, however it can be of short duration and only cause minor discomfort.

The dentist that did your fillings would probably not have looked at the extraction sites if you didn't mention to him that you were having any pain in the area.

If I remember correctly, your pain after the wisdom teeth extractions, started before you went to the dentist for the fillings and scaling. Therefore, it is possible that your pain was due to the injections for the extractions or it could have been a minor dry socket. The fact that you are feeling better is a good sign. In my area, we usually see a wisdom tooth patient in one week for a post-op visit to check healing. If the patient develops a dry socket, they will usually call before the week's up.

At this point there is probably no reason for you to go back to the surgeon, unless you feel compelled to. Dry sockets don't return, if that was what it was. The disappearance of pain after a dry socket would mean that the bone is healing.

Hope this has helped.

Jerry

Maureen, i don't think I have any infection at either site or from the fillings. I don't have that sensation of infection, nor is there any heat or significant pain. Plus, no fevers.

Today, the sockets are better still, I just think I'm hyper-sensitive to anything going on with my body. :-(

My gums and the empty sockets feel more "itchy" than anything...I know that sounds weird, but I'm hoping it just a sign of healing.

More than anything, I'm still battling this cold I caught on the plane. First it was just in my throat, then my chest, and now my sinuses...I was up all night with a runny nose and congestion...Now a major sinus headache!!! UUUgh! I was hoping I'd be fit for this last before tx starts to get a ton of stuff done here, plus enjoy the last few days...OH well.

Nelie, you're right about the port. I've asked both the Dr and the RO about Amifostine, but they both say not to use it, so I don't think I'll need the port...

I'll let you know :-)

Thank you for the sweet, uplifting words, I appreciate it!

Did they give you a reason why you shouldn't use the Amifostene? Amifostene is now given SUBQUTANEOUSLY (a little shot under the skin). It is so odd how there are so many different things to do/not do?
Sorry you feel so crappy ; (
My dad is starting to get the sore throat from 2 weeks of radiation. He still has saliva!
Michael-are you doing any PT for your Jaw? My dad's team encouraged 7 times a day for 5 minutes for a whole year--
Get better soon!

When we were up at Sloan, we were told they don't use ethyol routinely. They do at Hopkins, and it is sub-cu so injected at one or two sites about 1/2 hour before the radiation. You have to take pre-meds (anti-nausea and a mild sedative) about 90 minutes beforehand, and also, drink at least 24 and better yet, 32 oz. of liquid starting 1 1/2 to 2 hours before receiving the amiphostine. This is be sure you are well-hydrated, to avoid any blood pressure drop. The rad onc nurses both said they have seen relatively few problems doing this way but are perpared for the occasional more serious reaction. I did hear of one person almost having anaphylactic shock with the I.V. delivery, the sub-cu is not so radical. I understand from Barry's daughter, who used to work at Medimmune, that they are still working to find a better way to administer the drug to avoid these side-effects.

The OCF web site cites a paper that indicates that jaw exercises using the fingers are not very effective, compared to the Thera-bite system, in moderating trismus. One thing you should do is measure your jaw opening before start of treatment and keep doing it as everyone says this can "sneak up on you" -- which was confirmed by our dental onc as well.

Gail

Hey guys...

No PT was rx'd by anyone for the Jaw/Mouth...Although, I've been doing that since reading about it in this forum on a post.

Nor, did anyone at Stanford suggest PT for the neck surgery, however, Drs at MDAnderson wrote me an order for it after seeing how tight it was.

There are so many little nuances to treatment...Just like the Amifostene...Some use it, some don't.

Just goes to show you again, how different treatments can be from one institution to another.

From what I was told, Sloan has virtually "banned" Amifostene, but don't quote me on that exactly.

Where do I get this Thera-bite system?

So are they planning on giving you anything to help preserve your saliva or are those glands not going to be in the field of radiation? How about the pill Salagen?

I'm off to the horse races at Saratoga till the 10th. By then you should have started treatment. Best of luck.

Eileen

Micahel --

Go on the OCF web site under Dental Issues and follow links to Trismus -- there is a link to the Thera-bite company. Some insurances pay for it if it is deemed medically necessary. Barry ordered one, his ENT (who herself had HNC and knows what it's about) filled in the form for medical necessity, he faxed to the company and it's being shipped tomorrow. The woman he spoke to there said they get a lot of head and neck radiation patients referred to them.

Btw, Barry's ENT had a similar device to use when she had radiation, this was 15 years ago -- she said you have to use it regularly or things can stiffen up quickly. (She didn't and had some problems, now resolved). She also said when you get the PEG you have to try as best you can to continue to swallow, even if it means swigging 2% lidocaine beforehand as she has several patients who are several months out of chemoradiation and who relied 100% on their feeding tube and who now cannot swallow at all. She herself used lidocaine and managed to make it through the radiation swallowing although she says it was very hard.

Gail

Michael,
My Therabite just came in the mail today. My oncologist at MDACC gave me a prescription and I got the insurance company to pay for most of it. Now that I have received it, however, it says to have your "clinician" show you how to use it properly. My dentist has never heard of it and I am certain that the oncologist does not know much about the device either.
Who would be familiar with this...the speech pathologists at MD Anderson, or the dentists there? Or is it simple enough to watch the included video and do it yourself?
If any of you know ( like you Brian ) please help. By the way, I wish that someone had told me to get it 3 years ago when I was first diagnosed rather than now, when the jaw has probably gotten pretty stiff.

Thanks,
Danny G.

Gail, can you get Barry's Ent to visit this forum? A 15 yr HNC survivor is another inspiring statistic Amy

Wow...Lot's of GREAT new info! Thanks all!

I'll work on getting one right away.

I've heard about the swallowing thing, in fact I've read that one can spontaneously develop a hole in your throat from lack of swalloing...has anyone heard of this??

I guess it's the old law of nature..."Use it or loose it."

Eileen, the RO said she doesn't want to use anything to try to preserve the salivary glands...She promisses since she's the "best" and using IMRT that it won't be too bad...(I hope she's being truthful)


I have some 2% Lidocaine solution I got on the internet following the tonsil surgery.

I asked the ENT's at Stanford for some when the pain was at it's 9.5 peak, but they refused saying that it makes it too dangerous to swallow down the wrong tube, but I used it after carefully and never had a problem.

I've been swishing with Aloe Vera 3x daily preradiation and drinking it too. May be a total waste of time (& money), but I'm hoping it will help...(we'll see

Hi Danny,
Haven't written in a while-my husband has just finished chemo and rad and was really rough. Anyway, he has the Therabite as well. We had our lymphedema physical therapist show us, but certainly the oral maxillofacial surgeons are familiar as well as physical medicine md's. Our PT was well versed-better to have someone show you and discuss settings and progression. You could always ask the prescribing doc.
Good Luck

Glad to hear Lee made it through...

Sorry, I can only well imagine how rough it was (is), and am following right behind him.

Where did you go for his tx?

I guess I'll ask for instruction on the Therabite, even though I'm the kind'a guy that never reads the instruction manual...(Wait, aren't all guys like that?

Anyway, thanks for taking time out to update us all...Here's to happy healing for Lee...He'll be in our hearts and prayers...

- Michael

I've seen the TheraBite video and it is pretty self-explanatory. While I did not use the device, I have heard from many that have and found it effective. I used the old idea...stacking wooden tongue blades between my anterior teeth, each day pushing myself to get one more on the stack during treatment. Before radiation I could put about 16 of them between my teeth, my goal was to see that number stay the same all the way through treatment. As trismus takes effect, the muscles are less elastic and this becomes progressively harder. Scar tissue builds up in them and this does not reverse itself. So the idea is that each day you try to keep stretching the muscles to keep the scar tissue issue (say that 10 times fast) at bay. It will not prevent the formation of the scar tissue, but it will increase the elasticity of the muscle overall and keep the ability to open your mouth fully at an expectable level. By the end of treatment I no longer could do the same number of blades, but I was close to it. If you do not pay attention to this, you could be in a situation where eating is a serious problem let alone the issues of speaking and diction.

How soon before/after ACTUAL rad treatments should one do this?

Do I still have time to order the device, learn how to use it, etc?

Or should I just do the tongue depressor trick? (That's what I did following surgery in the hospital to re-learn how to get my mouth open big enough to eat)..Of course, my sister bringing me a pizza didn't hurt either :-)

Actually, the first couple of days, it was torture since I was starving and 'wanted' to eat solid foods so badly, but couldn't...UUgh! I just remember how miserable it was and don't want to repeat this during radiation.

I already am bracing for the mouth and throat sores/pains from the chemo/radiation combo...In fact, I still have some slight discomfort when swallowing since the surgery, like the muscles aren't the same, or something...It hurts a little under my chin when I swallow, almost like how a pulled muscle, or 'charlie horse' feels, but in my neck/chin area.

Guess it's always something

Hi Michael-my dad has been doing the tongue depressor thing 7 times a day for 5 minutes since BEFORE all of treatments. I say-start now to form the habit. They recommend he do this for one year-he does it religously but now it is difficult because his poor mouth is a mess-he started his 3rd week of rad on Monday-he is down to a liquid diet only- I am in the medical profession and based on recommendations from MD's to PT's-the act of religous stretching of the jaw does the trick. Hey-maybe we can start JAW YOGA!

Lee treated at Univ of Pennsylvania. We also got 2nd opinion at Sloan who concurred with surgery(Lee had Non-Hodgkin's lymphoma in 1996) so couldn't have enough rad alone without surgery. He will start swallowing Tx in a few weeks so we're hopeful...docs said if he can learn to swallow liquids(solids never possible) trach can come out! He hates that thing so much! Good luck to you I will be thinking of you.
Doreen

Does this mean we all have to become ordained?

Since Mark has survived for 4 years and 5 months I feel he should be given the honor of being ordained first. Now how are we going to ordain him and who is going to start first?

Doreen, thanks for the warm thoughts and update on Lee. I will be hoping for a quick response for him.

Barb, I nominate Gary for the honors of ordaining Mark first :-)

Hi -- Back from Maine -- we received our Therabite set while we were away, only 3 days' after ordering; reading instructions, it seems straight-foward enough. Didn't get a video, is this supposed to come with it or was it a separate order? The dental folks at Hopkins just recommend the fingers method, but after reading the paper on OCF web site decided that was not good enough -- will start right away, especially after heeding Barry's ENT's warning re swallowing issues and trismus.

The Hopkins rehab people told Bary to start using aloe vera gel (the 100% type, that you can swallow) both of neck area externally and in mouth; they also sent a sample of some cream (not Biafine) that is specially for radiation burns (Burn-block) -- the name sounds like you use it before getting rads but the instructions are clear that you only use it afterwards.

However, as a biologist I have been a little skeptical from beginning about the admonition not to put anything on the skin before radiation -- the photon beams are passing through various (and varying thicknesses over time) layers of skin, muscle, fat, etc. -- all of which have different densities -- and yet can be more-or-less precisely targeted -- how can 1 mm of say aloe gel cause any deflection of such energetic radiation? Not that we are going to go against what the radiation people say, but it doesn't seem to make much sense.

Same as with admonition not to take certain antioxidants, but if you look at what's in Boost, someone taking 6-7 bottles a day, is getting lots of C, E, and other proscribed vitamins in the food -- just as if they were popping the pills...

Oh well, on with the show...

Gail

FYI - The TheraBite company was recently bought from it's inventor / founder and all around great guy Bob Horst, so it is now part of a bigger medical firm, which is located outside the US. This may have caused some changes in packaging, what comes with it, etc. However, the product itself has not changed. Bob was always an oral cancer cause supporter, and now that he has retired (likely with some financial security from this deal) I wish him well, and thank him for the manner in which he cooperated with OCF in the early days. He has written the new corporate owner and suggested that OCF would be an organization worth supporting... but it appears that being on the other side of the pond, they do not see the value in that. Anyway, that doesn't make the product any less useful, and we will continue to tell people about it.

While I haven't asked the question of an authority, I was told that oils, lotions, etc. shouldn't be used because they might contribute to the burning of the tissues, and not because they might block something.

On the question of pre-rad ointments, etc.; for what it's worth, I've too have heard it's more a question of the synergy of the radiation and the cream, ointment etc, causing wierd combinations, burns, and reactions, more than the thickness/ray distortion. Maybe like how fluids, water, etc change the effect of sun rays (sometimes unpredictably) on the skin...but I could totally wrong on that one...(and everything else for that matter:)

What's it called, Refraction?

We just landed this morning (5:30 AM!!) in NY...

Hot & humid here, but not as bad as 11 days ago.

Glad to be here and starting the ball rolling...

There's an interesting new release today about Hemoglobin levels, in esophogeal cancers, which may or may not relate at all to ours, but it's mildly interesting...

http://patient.cancerconsultants.com/news.aspx?id=34722

My blood labs from 48 hours ago had HGB at 14.8 g/dl :-)

The thing that's bugging me the most the last 2 days is a "feeling" in my throat/mouth

I "feel" like the cancer's returned to the right tonsil tumor bed !!

I can FEEL something in there, especially when swalling, like something's stuck in my throat (how post-nasal-drip feels a bit), but it never goes comnpletely away...sometimes it's more noticable than others...

I can kinda feel like it would cause me to gag sometimes if I let it, and maybe make's my voice sound a little "gargle-ie", like I need to blow my nose sounding...

Of course, I had the 2 wisdom teeth removed on the other side about 13 days ago, had 4 fillings last week, a deep cleaning, etc, so there's been a lot of hands in my mouth!!

Then, I got sick with a 4 day cold the end of July too...

Anyway, I have my GTube surgery tomorrow, so we'll see if I can talk to an ENT while there.

They did an MRI last vist on the the 27th, just before my simulation, and I never heard anything about the results...I wonder if someone would have told me if there was something alarming??? Problably not, they'd just wait until my next appt... :-(

I should have had the radiologist's reading sent to me via fax, but forgot, and at the time, felt like it was more of a formality, to establish baselines, etc.

Maybe I'll feel better after some rest and jet lag catch up.

Things are worse on a weekend, or at night, since easily accessable health professional are slim..I think this adds (like I've said about nighttime before) to the anxiety.

Eating seems to temper the "sensation" a bit, so we're off the 3rd Ave to find a great street side bistro table..

I do notice that I have no "pain" in the site (like I started to get 24 hours just before the surgery), and no ear aches, fevers, or anything like that.

Gail, I think the aloe is a good idea too, I've been "taking" it for a couple of weeks now...100% pure, oraganic, and I've read that "Cold Pressed" is important too, but who knows!?

As far as vitamins as pills, versus in "foods" we consume, my surgeon answered this paradox by saying, "...no one really knows!"

(at least he wsa honest:)

Anyway, he say's that science doesn't understand why completely, but nutrients from foods are different to our systems than pill form suppliments so maybe that's a distinction to help exlain why vitamins added to 'foods' don't affect tx, but suppliments do..?

Or, maybe it's a way for the health care professionals to monitor (read: control) what we take into our bodies in the way of pills, suppliments, herbs, and medicines..?

Hope everyone is well!!!!!

Gail, I haven't looked at what vitamins are in each can of Boost lately, but I do know that consuming the amount of Jevity I do every day (the liquid stuff that's made for tube feeding), I get about what I'd get in a good multivitamin of C, E, etc. As opposed to getting, say, 1500-2000 mgs of vitamin C which is the level many people take (or higher) when taking it for antioxidant protection. The admonitions I got were against taking that kind of high level of antioxidants, not the lower minimum RDA level you'd find in a multivitamin.

Well, Barry was only taking 500 mg C (which is what is in most multivitamins) and they told him to stop, also 200 mg gamma-E (not a-tocopherol which is what is in Boost). Most other liquid diets are also rather heavily vitamin-enriched, something to keep in mind if you are also taking a multi-vitamin (which Barry was not, as not recommended by his prostate oncologist).

If he ends up using 6 cans of Boost Plus/day, he will be back to ingesting about 500 mg C or 6X the RDA. (And we know the Boost C is not naturally occuring as it would be in, say, orange juice.) Also a lot more beta-carotene (150% of daily value), than would seem prudent, at least for patients that were smokers.

This is not to dump on Boost but I do detect a certain inconsistency here...

This whole issue is controversial, have recently seen a number of papers and a couple review articles that dismissed the "conventional wisdom," finding more evidence for beneficial than negative effects from reasonable intake of certain antioxidants during radiation (not mega-doses).

I think the jury is still out on this...

Gail

Hi Michael. Good luck this week. I hope all goes well for you. I "felt" something in my throat also around 2 weeks after surgery. Just try and be calm and to not add any more stress to yourself right now.

Do some deep breathing meditation and get yourself some great books you always wanted to read but never did. I use Biafine three times a day but nothing once I get up in the morning and shower before I leave for treatment. On weekends I use a triple antibiotic recommended by the Shriners Burns Institute for Children. Oil is a no no and the antibiotic cream is only used on weekends and washed off on Sunday night.

My skin has remained soft and moist and though they felt it might be in a bad peel tomorrow it has gone back to looking pretty good with the TA cream. The rest of the time I religiously use the Vigilon pads and they have given me such relief I can't even discribe it. They are quite happy with the results so far. No hard, dry skin, no cracks and splits.

Best thing....just take your physicians advice. That is why you chose him and your team right?

hugs and blessings,
Barb~
2 more and done!

Barb:

Great advice, good news and info thanks!

I took notes and will review with the RO tomorrow.

:-)

- Michael

Gail, That doesn't make any sense, that they would care about such small amounts of vitamins in a multivitamin when he'll get that as soon as he goes on any kind of liquid diet. I have a hard time believing those more close o the RDA amounts of antioxidants really make much of a difference one way or the other, quite honestly.

You really need a microscope to read the mgs listed for each vit on the Jevity can (my super duper magnifying reading glasses made the print barely legible--obviously it's not toom important to them that it can be read) but I'm pretty sure that if I take 6 cans/day, I've been getting 450 mgs of C just from that. But, as I said, my oncologist made clear it was the larger doses of stuff that I needed to stop doing during treatment.

Although I was told to lay of C and E altogether before surgery. If Barry is getting a PEG tube, maybe that's why they are saying none at all? Otherwise, I agree it seems a little inconsistent.

Michael, I have been thinking about you and want to share my dad's experience (since you are embarking on what he did 3 weeks ago).
He went from eating pizza with us one day to radiation sores in his mouth the next. Since he wasn't expecting the pain to creep up on him like that, he spent the whole week trying to catch up with the severe discomfort. Please, get your pain meds now and the minute you get a hint, start taking them. He is now in the hospital with fever spikes-his labs are NORMAL. From what I've learned, this is usual.

Shawna:

Thank you very much for the great suggesstions.

I am sorry your Dad is hospitalized I will be thinking of him and wishing a swift return home.

What do they do while hospitalized? Do they still give radiation?

I had my PEG Tube installed yesterday!

UUUGH!!!!!

The surgery went fine, and the incision looks good and doesn't hurt much at all....What killed me was the GAS they pump inside the tummy (dilate)..!

After wards they said I could eat normally...(Guess they couldn't tell by looking at me that "normally" means a lot!

So, a couple of hours after the proceedure, we were at a sandwich shop and I had a turkey sandwich...

Well...30 minutes later........YIKES!!!!!

MAJOR, MAJOR, MAJOR DISCOMFORT!

I felt like I was going to explode (almost wished I did)!

The 'pain' spiked with spasms hitting a 9 a couple of times..

I couldn't find any comfortable position, and was getting dehydrated.

I called the GI surgery team and got a Dr (fellow) on the line...

He said to just tough it out, and deal with it..

Well, by now most of you know that doesn't work for my personality, so I hung and called back 45 minutes later.

Still in MAJOR pain, I paged the surgeon.

He immediately called me back.

He suggested taking some "Gas-X", and Tylenol.

So, (one thing about NY is there is a drug store every 100 feet!), Seth got me both, and I had him get some Baking Soda and Club Soda too.

I took them all, and it helped a lot, but not 100% resolution.

So, it was a LONG night...Didn't sleep too much, and got a fever around 10:00 PM.

Fever has been up and down, helped with the Tylenol, and I have an appt this morning with the Oncologist so we'll discuss this, but I think it's a normal reaction to the trauma of the incision.

Anyway the pressure is much better this morning, but now it feels like I just did 2,000 sit-ups!

Moving slowly, and getting in the grove for my appt.

That's it for now...

Radiation setup is Friday, with actual rads starting Monday.

Thanks everyone for being there for me!

- Michael

Michael,
Thoughts and prayers for a healing experience in New York. My husband is having similar experiences to yours except here in Cleveland. He had a tonsillectomy 7/6/05 and began radiation/chemo 8/2. He got his Peg tube 8/5. You seem to be going into this quite well-informed. Hope you meet many wonderful people along the road that carry you through as we seem to be meeting - not the least of which are these website friends! How is Seth holding up?
Janet

Michael,
Don't be shy about calling those docs. Other than one or two sharp pains before I left the hospital, my PEG never caused me any problems. I don't think that it should be painful. Heck, I used to work out and play golf wearing the thing. Best of luck on your treatment. My friend from L.A. was also treated at MSK and they dosed him pretty good with chemo and he is still having some numbness in his feet...ask them about that.

Take care in the big city,

Danny G.

Ahhhhhhhhhh you hang in there Michael. Believe it or not before you know it the treatments will be over and you will be thinking "wow that time went fast" Wait and see.
I will be thinking of you ans wishing you well.
GB,
Barb~

Hi Janet...

Thanks for checking in, give us an update on your husbands journey when you have a chance.

Seth is doing OK so far, thanks for asking.

He made at least 4 trips to the pharmacy yesterday and didn't complain once (which is unusual since he typically complains even if he isn't running around spending money on expensive things for me), just kidding, he has been quite the trooper.

I am grateful and lucky to have him to help me through this.

Where in Cleaveland is your husband getting treatment..?

Danny, hi. Sorry I didn't end up in Houston, I was looking forward to hanging out!

As far as the neuropathy, the Dr today again went through the possible side-effects of the Chemo, which all sound reasonable. The biggest concerns for long term effects are neuropathy, and hearing loss.

I have an audiologist's appointment on Thursday to get a baseline for future comparrison.

I am also going to see the Opthomolgist and Dentists on Thursday also.

Then Fri, I have the Setup for Rads.

In the meantime we are finalzing our apartment search, trying to narrow it down...I think we are going to go for convienence to Sloan, vs. extra nice.

I figure a few weeks in to it, I'll be greatful the apt is less than 50 feet from the entrance to Sloan :-)

Barb! Congrats!!

Wasn't today your last day!?!?

Thanks for sending me the good wishes!

Hi Michael --

Barry had his PEG yesterday and Hopkins Dr. specifically said -- liquid diet only for 12 hours and then eat carefully for a day -- so guess he knew something -- anyway Barry's incision hurt last night (like you said, the muscles) -- took Percoset 3x and had problems finding a comfortable sleeping position. But this am it only hurt a bit, took one painkiller before leaving for the hospital for his tomo walk-through, and none after that. It hurts if he presses around it, but all day he's been able to eat normally. Just burping more than normal.

We were really happy about this, some folks have had nausea problems after the g-tube was inserted.Today, the chemo nurse showed us how to flush the tube once a day and how to clean the dressing around it.

The walk-through (where they check the plan and re-scan to compare with simulation) took a long time which was a real pain as he is somewhat claustrophobic and being in the mask for so long started to get to him. They recommended that he bring some CDs tomorrow to play to distract him.

The fact he's gained 16 pounds since the simulation (sort of a record, he attributes to 3 weeks of cashew nuts and high-calorie smoothies) meant they had to re-calculate some things but they are very pleased he gained weight as he was thin before ("ideal weight" but not for entering chemoradiation therapy!)

Barry has his first real radiation treatment tomorrow and is getting amiphostine -- hoping he can handle it -- has serious anti-nausea meds to take beforehand. Chemo (carboplatin) Thursday, first of 6 treatments.

Good luck Michael, hope you can enjoy some of New York and that the weather moderates! This has been one h*** of a summer in the east for heat and humidity...

Best, Gail

There are many things I read on this forum that leave me "scratching my brain". Some of the posts above[along with others about PEGs] to name one. John never got the choice of if or when to have a PEG. It was inserted during his tumor surgery which seems[to me]to be the ideal time. The 1st 3 days after surgery, he was on morphine drips "on demand" and that controlled most of his pain. His memory of those 1st few days is that the catheter and the "boots" on his feet to increase circulation to his legs were the things that bothered him the most. When we went home, the peg was and still is an irritant, but not another surgery to face during the rest of treatment. It's really interesting[mind boggling] how many different approaches are out there.

Michael-after they rule out that there is no infection-they say the Temperature spikes are common. Dad's temp is at bay-His treatment has been delayed for a week (due to his little episode and mouth sores.) He is being kept here so we can ease him into the peg. It's great, I'm emailing from his room. His labs are good. He will be discharged Friday for readmission Monday am. The treatment is beginning to take a large toll on his energy-that is to be expected.

Hi,

At Hopkins if they are not doing surgery (which Barry did not have at Hopkins) and the patient is getting chemoradiation OR bilateral neck/throat radiation, they really push for a gastric tube. And -- they want it done before treatment starts. However some people resist and end up having it inserted when they start to have eating/swallowing problems. This is not ideal but they cannot force folks to have surgery! It is the patient's choice...

Actually, it is done under "twilight" sleep -- the same as when you have a colonoscopy, and not with general anesthesia. Barry doesn't recall any of the actual surgery, but he was semi-awake for the endoscopic tube into his stomach -- which he said was the worst part!

No real pain today but it is tender if you press around the insertion point, and if he does something that involves contracting his abs.

Gail

Gail, I wish I had been told what they told Barry

In any case, I spent most of the day today in the ER.

My fever spiked at 102 and I figured better safe than sorry.

Serveral hours later, it was confirmed that the Xrays all looked normal, the fever had subsided, urinalysis and blood labs ALL normal, and pain/spasms reduced and finally let go to have dinner!

Anyway, I feel better still now, and finished cleaning the incision site and changing the gauze.

I think I got dehyrdated too from fasting for the surgery first, then not drinking due to bloating after.

If anyone else has this done, insist on IV fluids to keep you hydrated, even if it means a cath for urination.

Anyway, what's really starting to bug me now, is the thing I posted about a couple of days ago:

(Of course, you know me, I've always got to have something to worry about:-)

[quote] I "feel" like the cancer's returned to the right tonsil tumor bed !!

I can FEEL something in there, especially when swallowing, like something's stuck in my throat (how post-nasal-drip feels a bit), but it never goes comnpletely away...sometimes it's more noticable than others...

I can kinda feel like it would cause me to gag sometimes if I let it, and maybe make's my voice sound a little "gargle-ie", like I need to blow my nose sounding...

[/quote]So, today, it is now more pronounced than ever.

It seems to actually already be affecting my speech and I feel like it has grown in the last 4 days.

What do I do?

If it has grown back so soon, what does that mean for my prognosis? Bleaker still?

I am hoping it is only scar tissue, etc, but without another biopsy/surgery, how do we know?

Thanks for any advice, or information.

Michael, you gotta give yourself a chance to heal. You will not all of a sudden wake up tomorrow and be over all you have been through. But you can worry yourself into an early demise Try to concentrate on living-1 day at a time. Amy

Amy, isn't that a Day Time Drama TV show??? Or wait, a multi-vitamin???

Seriously, I've always had trouble 'living in the moment' and that's one thing this disease (and even more so it's treatments) forces one to do.

Someone told me early on, that I will have to be patient, and I'm trying.

The fear that I am having an agressive recurrance, just 42 days out of surgery that supposedly had clear margins, is captivating.

I was able to get a same day appt today with the ENT between my hearing test, new EKG, and dental followup, so I'll ask him to scope it and see what he thinks.

Meanwhile, I'll try to assume it's just my body's rapid and effective healing taking place! (It does itch a tiny bit, so I'm thinking that's in my favor:)

I can certainly understand the fear, Michael, but I'm keeping my fingers crossed for you that that's all it is at this point. I had a similar fear right before my chemo/rad treatment started and actually I wodnered the same thing you did--wouldn't the CT they do for the radiation mapping show somehting like that and wouldn't someone say something, if something like that was there. I ended up assuming they would, and never asked for any special checkup then, but maybe I was wrong. Did you ever ask that and get an answer?

Hi Nellie:

Good to hear from you again!

I didn't ask, I saw the Dr review the MRI results (the oncologist) (Dr Pf...)

He kinda frowned and didn't volunteer anything, and I was afraid to ask specifically, although I think I brought up the subject of "feeling something".

He said something about, "...doesn't really matter since the tx plan is the same either way..."

Who knows...I guess it doesn't help to know if it is a recurrance, since it only hurts my odds, and doesn't affect who we approach it.

The only factor that makes an impact is if the tumor has returned I'd like it excised so that I can have an EVA test done on it.

Stanford ruined the tissue sample they removed during my surgery and they couldn't test it!

Hi Michael,

Was thinking about you as I was driving back from Saratoga and hoping everything was going well for you. I don't like the sound of 'this thing' in your throat nor do I like the drs answer. I think I would have pushed him for specifics, unless you really don't want to know. I forget, did they completely remove your tonsils when you had the surgery or just the tumor?

I can sympathize with you over the pain from the gas. While I never had a Peg, I had a tubal years ago and the hospital brought me a huge dish of pasta right after I got out of recovery which I wolfed down since I hadn't eaten for more than 24 hours. An hour later I was in so much pain I thought I was having a heart attack. Lasted for about 4 hours until I got up to go to the bathroom, got dizzy, made it to the bathroom with nurses help and then promptly passed out. That cleared the stomach and intestines and no more pain. No thanks, never again.

Take care,
Eileen

Boy Michael, I am sorry that you went through all that -- the tube has been pretty smooth sailing for Barry except for about 5 seconds ago when our puppy managed to jump up and hit him *right* on the incision area with her little hard paw! He went off hunched over like Quasimodo, saying weakly, "I don't want to play with you any more right now...."

He had his first chemo today -- I will post more on our "in treatment" site (new topic we're starting today as he is no longer "about to start...")

Regarding your feeling that there may be "something there" -- we asked our medical onc about the rationale for not removing ("debulking") some of Barry's base of tongue tumor before the chemoradiation -- it is surficial, that is, it has not invaded into the tongue muscle -- and she said about what your oncologist said, the radiation/chemo treatment plan is designed to take care of all the cancer, that further surgery would not give any better result.

Gail

When does your radiation tx start? I had a biopsy done on the back of my tonge and i swear he took half of the back of my tounge off by the feel of it but a week or so after that i could feel something there too and was told it was swelling a lil from healing.But when i started tx it was very profound till almost 2 months past my tx stop date from the tissue scaring and just from the destruction on the site from radiation. good news is that now i feel nothing there and my next apt. with my ent where i get scoped for the first time is on the 18th of this month.
Good Luck to you on your journy to being cancwer free

Bob Grey

Michael,
Just wanted to say hi and hope the feeling in your throat proves nothing worrisome. John told me he finds himself wondering what each sensation in his throat/tonsil area means. His left tonsillectomy was July 6th. He seems to be settling into the radiation rhythm pretty well now and the chemo effects seem gone for now - there is hope! He also fights dehydration but he's now accepting the Peg tube and beginning to appreciate what it can save him in time and effort. We both jumped though when he belched as I opened the Peg clamp and I got splashed! Hang in there and best of luck. He's being treated in the Cleveland Clinic system at their Moll cancer site on the west side of Cleveland.
Peace,
Janet

Michael,

You need to calm down a bit. This is only Thursday? You just got here! If the Oncologist really believed he saw a reoccurence, he would have told you. I had mild memory problems when I saw him on 6/16 /05 and was in the MRI 2 hours later, the craniotomy followed shortly. Don't forget, I have been with the same guy for nearly 2 years and he is, as you and I have discussed, not afraid to voice his opinion. Good or bad. I don't mean to knock ANYONES Hospital choice, but MSKCC is very near the top of the list on places to treat cancer. As we had emailed, you probably could have stayed closer to home ("The OC"), but you are here ("The Big Apple") and need to place some trust in the choices you have already made.

As a final thought on this particular issue, I would not be so fast to get more surgery. It will halt all further treatments until you heal and you do not want that. I have put off chemo for nearly 2 months to recover from the brain tumor and Stereo-Tactic Surgery, and I have fairly nice dose of Bilateral Lung cancer. You will have ear pain and related surgical issues for quite a while, and although it may some day be the cancer returned, you need to dig in and get this done.

I do not believe in blindly following your doctors order, but you do want to allow some latitude. They have kept me going very well for over 3 years and my OC has traveled my entire body.

And, since I have decided to voice my opinions as I see fit, we avoid using the names of medical personnel here and I fail to see the need for inserting what may be the first 2 letters of the name. Do you?


Try to calm down! Maybe I'll look you up on Tuesday, I'm there early.

Glenn

Michael,
I totally agree with Glenn.

I didn't have a clean MRI for almost 1 1/2 years. There was always some ROI (region of interest) that the radiologist was dutifully flagging. All of them turned out to be nothing. The radiation and the chemo will mop up what's left. It's inevitable that you will have scar tissue (and you will have even more from the radiation). They don't like the "feel" of it and watch it closely but it DOESN'T mean you are having a recurrence. We can understand your fear though - we have all been there. Take a deep breath and enjoy your pre-radiation time while you can.

Hey ALL!

Glenn, I used "Pf" to honor the rules, but let my friend's and family know the particular Dr since I've had so many, and they frequent the board for updates and support.

I have GOOD NEWS !!!

I saw the ENT on Friday (Dr Sh...)

He is very calming and professional, while also showing compassion.

His team inspected the site and dismissed it as scar tissue forming.

He said: "I see nothing on visual or tactile examination to indicate it is anything but normal tissue".

So, I'll take that as good news, and have been continuing as planned anyway.

Friday I also had my "SETUP" which seemed to drag on for hours, but only lasted about 1:15.

Again!!! My HEAD was killing me half way through, and we had to stop twice due to nausea.

I am practicing with some topical treatments (Eucalyptus, Menthal, etc) to see what can keep my scalp cool during the 20 to 30 mins burn time each day.

I haven't heard anyone else every mention this as an issue, so I'm sure I'm just being a big baby, even the tech's seem surprised that I complained about it.

Basically, my head is so big that they needed to take the pad out from under the back of my skull when they did the simulation, mask, etc.

My head rests on the bare block of table and starts to feel like it's ON FIRE after 10 mins.

Anwyay, I think I'll get used to it too.

Even if I don't, I'm sure it's not the worst of my problems

As far as the PEG, it's fine.

I'm keeping it clean, and flushing it as instructed.

Haven't really used it much, but like the idea of having it "just in case".

However, the stomach distress is quite severe.

I had the PEG surgery Monday, and even today (Saturday) I still have spasms that are terrible. They wake me up all night long, and keep me from taking a deep breath.

I spoke to the fellow on call at the hospital today (they really are great here!!).

He said it can take up to 2 weeks to feel better and that it really has to do with the proceedure of filling the stomach with so much air for surgery. (Dilate).

He say's it can collect in cavities and takes a while to all get out.

So, I'll continue to put up with it, but it upsets me that "the last week of normalcy" before chemo/radiation was ruined by the pain, discomfort, naseau and bloating of having the tube.

My hearing tests, and EKG all showed normal, and they finished processing my slides that I brought with me.

So, I think I'm all set.

Any other tips for Cisplatinum? I have it scheduled for 5 HOURS min. each day for two days, at least 3x during rads...

Yes you are being a big baby! The mask will fit tight in the beginning but will loosen up as you lose weight. If you are really uncomfortable however, let them know immediately. Every now and then they would use the wrong head rest or orient the correct one backwards. You must take some responsibility for your comfort level.

Cisplatin is a bitch. Eat first before you have treatment - it's easier on a full stomach. STAY HYDRATED. The stuff will kill your kidneys if you don't drink 2-3 liters of water every day. You will get some ringing in the ears, give the doctor lots of feedback how you are reacting, especially hearing. They will typically infuse you with Zofran to mitigate the nausea. Stay on top of all the meds they give you. Keep in mind that Zofran loses its effectiveness after 3-5 days of continuous use so have other anti-emetics at the ready. I would suggest having compazine suppositories on hand in case you are throwing everything back up.

Cisplatin also does a number on the stomach lining so industrial strength antiacids are a must.

I didn't have a tube so I can't comment except hearing stories like yours makes me even more grateful I didn't get one.

That's a wierd protocol. My Cisplatin protocol was about 4 hours every third week. The infusion itself wasn't any big deal. Bring a walkman or iPod with you. Ask them for a heating pad for your arm - it's makes it a LOT more comfortable.

Burn a good CD for your radiation treatment sessions. It really helps to pass the time.

You had a baseline TSH right?

Michael,

What 20-30 minute burn time? I have had........75 daily radiation treatments in the past 3 years and none were more than a few minutes on the table. The only exception would be the radio surgery, that was 2 X 25 minute treatments in a 1 hour period which targeted 17 spots in a 1 innch area. You DO understand that the treatments are nothing like the simulation. You will feel the cumulitive damage over a period of time, not the rads. And Gary is, as always , correct, the mask will loosen quickly.

Glenn

My first smile face, I didn't know it did that. I may have to head over to the fields!

I was on the table for 40 minutes every day excpet when I had weekly x-rays then it was longer. Rads are accumulative - that is why there is a maximum lifetime dose.

That sounds like my bad! I had conventional radiation. I guess the IMRT takes a bit more time. I had 3D conformal for the LC and I guess that was a bit longer than the neck treatments. I'm thinking the actual treatment time, actual radiation, was under 5 minutes.

Gosh, cisplantinum sounds pretty harsh!!

A lot to go through for a negligible gain in long term survival.

I'll ask for the heating pad and I've been drinking TONS of fluids the last couple of days to try to be well-hydrated.

Did the anti-emetics actually work? Or do they just lower the nasuea a little..?

How long do the "effects" last?
(Kidney damage, Mouth Sores, Nausea, etc)

Until the next infusion?

Will it be awful the whole 2 months? Especially with the concurrent radiation problably, huh?

Yes, I got the TSH and many other labs done 10 days ago at home.

Glenn, I got the time estimate from the RO...She said the actual BURN TIME is 10 to 15 minutes, but setting up, calibration, etc takes a while.

It's not a "neglible gain" recent studies have shown as much as 13% higher survival rate when used with radiation.

The trick is to remain hydrated when you're going through treatment. You won't have kidney damage if you stay hydrated.

Cisplatin is some nasty stuff. I smelled like a chemical waste dump for about a month after it was over. Here is a very thoruogh link to everything you will want to know (and don't want to know about Cisplatin http://www2.mrc-lmb.cam.ac.uk/personal/sl/Html/Frames.html

Mouth sores maybe as long as 2 or more months after completion of treatment.

The antiemetics work 60% of the time according to the manufacturer of Zofran.

My actual "beam on" time was 40 minutes/session. The whole thing was about an hour.

The worst effects occur about 3-5 days post infusion. Just about the time you're feeling better, then it's time for the next infusion.

I am not trying to scare you but this is tough treatment and you're better off preparing emotionally and knowing what to expect.

I and many others here are living proof that you can survive the treatment. It was no walk in the park however.

Michael-

I agree with Gary -- you need to be prepared for the worse and hope for the best -- that's what Barry and I told all our doc's and nurses so we have already discussed options if plan A (or B, etc...) doesn't work. Every one of them, even our most "Ms. Sunshine" nurse, has said it is going to be very very tough. But they also have said, we are all (which includes Barry and me) going to work together to make sure you get through this...!

Barry is getting carboplatin instead of cisplatin for reasons noted earlier -- to not exacerbate his current high-end hearing loss nor contribute peripheral neuropathy to his already existing benign essential tremor (hereditary, his dad had it, does get worse with age). Also his renal function is fine but not that of a young man (he's 66). Carbo is better for all of these and also can be given in 1/2 hour; the down side is that (as a newer drug) there is a lot less data on long-term efficacy -- but what's available seems to indicate it has similar results as cisplatin as a radiosensitizer. Both work by forming platinoid bonds in cell's DNA, preventing replication. Both are potent myelosuppressors, thus anemia and platelet/white blood count depression are expected side effects and will be monitored before you get your chemo each time.

Barry plans to continue to do as much as he can while he can, continue moderate exercise and so forth. This helps with fatigue, as long as not over-done.

Barry's time in at the tomo-IMRT when there are no scans being done is only 20-25 minutes and that includes the set-up and take-down; the actual time the beam is on is about 10 minutes, watching the "Beam On" sign outside the door. They play music for him and the ceiling is a giant back-lit transparency of the galaxy.

His mask fit too tightly around his mouth when we did the walk-through; recall he had gained almost 17 pounds -- and it was pressing his lips badly against his teeth. Sort of a recipe for sores. The techs enlarged it a bit with RO's oversight and it was fine the next day ("perfect" said RO).

He is still having PEG issues and these are primarily stomach gas and burping etc. so glad to read that this is expected and should be temporary. It does contribute to his having that mild nauseous feeling, which is relieved more by Prevacid than an anti-emetic. We are going to ask nurse about this tomorrow in case she has a better suggestion.

Michael asks what to do for skin etc. Obviously nothing on before treatment (couldn't tell from M.'s post whether he was OK'd to put stuff on his head during the treatment) -- the second Barry gets out of the treatment he sips some cold water and holds in his mouth, then heads to bathroom and rinses mouth with cold 100% aloe vera gel, and swallows this. (Have to have the 100% stuff that is edible, get from GNC or similar. He uses about 15 ml. in mouth). He also smears some on his skin (or his Radiacare gel, which is mostly aloe). Then Biofine cream on skin, all radiated areas. It is too early for him to have broken skin or mouth sores; what he does at that stage will probably change.

We have a daily check list of stuff to do which includes various rinses and skin treatments, as well as the Thera-bite (7x a day) and fluoride. This works really well to remind him to do something. Having a routine helps.

Michael, keep drinking -- did your nurse give you a "target" amount of fluids per day? Barry's is 72 oz minimum. This and eating good foods as long as you can will really help. I know my mother had lots of problems eating during her chemo as nothing appealed, they told her "medicine is food" and to do what she could.

Good luck tomorrow --

Gail

Hi Michael, my dad is getting his second dose of Cisplatinum this Monday. Of all the struggles, he didn't have any issues with it. Where he is being treated, they require him to stay overnight to complete a massive fluid flush in conjunction with the chemo. They also give him an expensive battery of anti-nausea meds IV. Emend is one of them and he had no nausea. We are knocking on wood and continuing to pray that he won't have to deal with nausea.
Reagarding your question of how long all of this will last-my dad was perfectly fine until the last days of his 3rd week in. Then, pure hell. They gave him a week break and he is resuming tomorrow. Again, please be prepared for pain, meaning have your liquid oxycontin to squirt into your tube as well as Fentanyl patch for long acting pain relief. Since I haven't had to have this treatment, I can't express what it feels like. I do know that we both wished that his Medical team would have been able to be more specific about what to expect. Realizing that everyone has different reactions, we are realists and appreciate upfront news. Enjoy these next couple of weeks if you can.
The greatest thing is that since his break in treatment, his mouth feels 100%. Meaning, he is optimistic that once he makes it through treatment he knows he will feel okay again!
PS-his jaw is already tight and it is getting more difficult to shove the tongue blades in--

Thanks for the info Shawna.

Sorry your Dad had a rough time!

I got Emend ($ 40 a pill co-pay!) too, and a few others.

Sorry he had to take a break, but maybe it was good to show him how quickly he can bounce back after the end of treatments.

- Michael

Shawna --

The OCF web site cites a paper that concludes that the tongue depressor technique or the finger stretch method of dealing with trismus are pretty ineffective (go to "Trismus" page) . The Thera-bite system seems to work better and Brian posted on another forum topic explaining why the OCF site links to this company --

Medicare pays for (most of) it and so do many private insurances -- you just need your doc to sign medical necessity form and you fax to them.

Barry got it after talking to another Hopkins patient who did the tongue depressors and still can only open mouth 21 mm. It seems pretty easy to use -- will post to forum if it works...

Gail

Michael,

I just wanted to repeat what everyone else said about cisplatinum. It's a tough treatment, although everyone responds differently. It was especailly had on me because very few of the anti-emetics worked for me, although Zofran did-- usually. Compazine suppositories also helped a little (kept me from just moving into the bgathroom with the dry heaves) when everything else quit working--but I HATED the way compazine made me feel. If the first combo of stuff they give you doesn't control the nausea, be prepared for some experimenting around until they find the right combo. Everyone is different in what they respond to. I also have naturally low blood pressure so they ahd to wtch thatl, especially since I was getting amifostine too.

I'm also confused by the schedule you have. It sounds like they are giving you each treatment (3 treatements, which is the standard) over two days--I had mine in one day, which I think is the more common way, but it did take about 5 hours.

The effects on survival are hardly "negligible", though. This particular type of chemo ahs been really well researched in terms of how it affects outcomes in combination with radiation and, as Gary says, the gain is clearly well over 10% --at least for your stage. Even though I am stage II I chose to have it even though my medical oncologist said a rule of thumb would be that for stage II the gain in survival would be half what it is for stage II and IV. So I chose to have it even thoguh the gain I can expect tog et was probably more like 6%. Even that seems worth it to me. But heck, I'm also willing to take Tamoxifen for my breast cancer and throw myself into early menopause filled with hot flashes for the next few years even though the gain there is probably 5% at best. My medical oncologist (who used to be at Sloan-Kettering--moved here to bring up his kids) said his experience is that it's at around the 5% gain level where people are willing to go through some hard stuff and they still find it worth it. Maybe that numnber doesn't do it for you, though....to each his own judgment on this, right?

As for problems with the PEG, I think my gastroenterologist was very cautious about the insertion--they kept me overnight with IV feeding--he didn't want me to have anything in my stomach--liquid or otherwise for 24 hours after. But when i did go home, I never had all the problems with gas that it seems aren't too uncommon. So even though you asked a bunch of surgeons about swimming with the PEG, and they seemed to think it would be OK, I think I'm going to trust my doc when he says it isn't a good idea and water leaks in (he actually had a story about this--he's seen it happen). But let us know if you do go swimmi9ng because now I'm very curious!

I would also just like to say that if the rule here is not to use doctor's names, the two letter thing you're doing is making me a little uncomfortable--kind of like staying to the letter of the rule but maybe not udnerstanding the spirit of it (would it really be hard for anyone else to figure out which doc there those letters refer to?)

Has anyone else on here noticed that we are hypocrites at times about statistics?? We tell people not to pay any attention to them yet use them when it suits us. I have caught myself doing it also. I see it again here in this thread. I would hate for this thread to worry or scare anyone that hasn't had any chemo, only had radiation. I would hate for them to feel like they have a 10%-13% less chance at survival as no one on here can KNOW that. Some that had chemo will die, some that didn't will survive, there is no way to tell as there are so many other factors.
Ok, just felt the need to say this.
Minnie

Well, the whole thing is it's important to understand teh limitations to statistics. And what they mean and what they don't mean. The percentage refers to some percent of people that would benefit if they had both chemo and rad. that won't benefit the same way from just rad. But no one can know whether they themselves are a part of that percentage--you either are or you aren't--that part is just luck plus taking absolutely the best care of yourself you can given what you know now and knew at the time.

For me, personally, knowing the percent of people for whom a tough treatment created a better outcome is helpful in deciding whether I want to have that treatment with the hardship and possible long term negative effects that it entails. I would rather know and make my own decisions about that than have my medical oncologist decide FOR me that, say, a 5% gain in disease free survival is enough that I should have the treatment and all I hear is that I need to have it. I recognize not everyone finds this info. helpful, though.

I'd hate to think we couldn't discuss this information because it is helpful for those who want to know about it. I never would have considered doing concurrent chemo had it not been for those numbers. But I agree we need to be remind people that there is no way tell what percent you would be in when push comes to shove.

Nellie:

Thanks for the comments. Regarding Dr's initials, it's just for reference to those who already know the Dr by name.

I think the reason we don't use whole names is for 2 reasons, (I am guessing), 1) liability (for statements made about a professional here), and; 2) the "free advertising" one might get.

Using the initials solves these issues and sticks to the spirit of the rules.

I'll be happy to be your guniea pig about the swimming...You should know however that I have found several different types of G-Tubes out there and it may have something to do with the type. There are NG, PEG. PEJ. BUTTON & GT/JT to name a few. I think Brian mentioned using bags for his, and mine uses a syringe instead.

As far as Dr's statements, I think you put more stock in their opinions than I do. Just by the shear fact that they disagree on some many minor issues is evidence some are wrong. They can't all be right when they give conflicting information.

I trust and respect the medical field, but they are not Gods.

I talked to a GI here and he said the eating same day had NOTHING whatsoever to do with the bloating/discomfort, and it was simply due to the technique used by the surgeon.

So, there you have it, another opinon

As far as stistics, you are right. But there are ways to interpret them for one's own intentions and I think now they are more confusing for me than anything else.

Good reply Nelie and you're correct. I realize the numbers are needed but just want to make sure that non chemo survivors are not spooked by all the talk about chemo/radiation.

I don't quote statistics when it serves me - only when it serves a fellow cancer survivor or caregiver. As a patient advocate it is important to give as much information to people as possible so that they and their medical team can sort out their treatment choices. Besides it's like apples and oranges - there is quite a difference beteween a statistic that will improve your survival odds and mortality statistics. As far as upsetting persons who had no chemo, well I have 2 responses:
1. There may be risk/benefit issues which they need to discuss with their doctors.
2. Treatment planning is a very individual thing, based on many complex and diverse factors. In early stage cancers only one or two treatment modalities are typically indicated. This can be any combination of the three basic types of treatment.

There are never simple answers to these types of questions.

The doctors that approved the trismus part of the pages in OCF's main site (and everything gets put past them) believe that tongue blades work, but the TheraBite device works on a curving pressure more like the natural movement of the mandible. This is a minor point in my book, but if your insurance company is going to pay for it why not use it. I have no complaints about my results using the plain old wooden blades from Sav-on.

The issue with doctor's names has nothing to do with any benefits or kudos they might get here. It has to do with liability, and OCF doesn't want to be on the receiving end of any. It easy enough to say my radiation doc or whatever and just leave names out of it all. As soon as someone trashes a doctor by name, or even in the positive leaves a phone number or something here, I hear about it. It is unnecessary and can be kept in the world of PM's and emails for those that wish to exchange that kind of info.

We all know that talking about survival statistics has limitations and it has been discussed here ad nauseum. Everyone is on the edges of the issue with statistical results. Numbers provide some guidelines in decision making both for us and for doctors. I don't want a treatment that has only shown a 1% increase in survival that has horrendous side affects associated with it. That knowledge might affect my decision-making. However the fact that stage 4 patients' fair significantly poorer statistically, is a number that isn't of any value to us. You can't use it for anything except to exacerbate your worry. So there is a place for numbers and there is a place where they don't help. We don't live in a world of absolutes. If it has benefit and the ability to help someone make a decision it's worth mentioning.

You're right Gary, there are no simple answers. I am guilty of preaching the statistic that if we make it 2 years from treatment then that is a landmark and our chance of staying alive are higher. But, I push away and thumb my nose at the stats that say a stage 4 has such low odds of survival at all. Human nature I guess.

Michael, I was under the impression that for most PEGs, you could use either bags or a syringe, depending on the set-up you want. That's the way mine works anyway. The tube has two openings at the end, one that would accomodate a bag set-up and one that accomodates the syringe.

Please don't assume I think doctors are Gods or that their opinions are always right simply because I said I'd trust my gastroenterologists more conservative recommendation about the swimming. All I said was I'd prefer to go with a conservative opinion on that given what might happen if I ignored it, especially when it appears to be based on a couple of actual stories of swimming mishaps with people with PEG tubes. Beieve me, if you'd been around here when I was trying to decide what treatment I needed after surgery you'd be aware that I *hardly* accepted doctors opinions without a question (thnak goodness) nor do I recommend anyone else do that.

Minnie, I hear you about wanting to be sure the non-chemo folks don't get spooked. Since the big studies on the effectiveness of that just came out a little over a year ago, I'd imagine that many people who were treated before then were not even offered the option of concurrent chemo, unless they were part of the clinical trial. In another couple of years it could be some other new treatment that few of us now are being offered such as Erbitux. I think in these cases it *is* very helpful to rememeber that you can't know for sure if you would have even been in the percentage of folks who benefitted from the treatment.

But in terms of the bigger picture, thank goodness there ARE these new and hopeful pieces of research coming out about treatments that clearly increase overall survival. Let's hope there are lots more in the future for all the future people that will be in our shoes, right?

Michael,

I just wanted to add that I'll be sending good wishes your way tommorrow for the first day of your treatment -- hoping it all goes really smoothly. I was very excited about actually getting started with my treatment, as you are too,but I also rememebr nervous about how it would go, especially with the chemo. Once the first day went smoothly, I relaxed a lot more. I hope that you have a very smooth first day of treatment.

I was told early on by both my ent and members of this board that MY stage 4 tumor and surrounding invasion was not good. The ent told me flat out that I would be lucky to live 5 years. After the 17 hour surgery and receiving the pathlogy report it was worst than they imagined. I had poorly diferentely margins, the tumor was invasive into other parts of my mouth and throat and they couldn't get it all due to part of the tumor being on the carthoid arterey. They told me the IMRT would take care of this.

After receiving IMRT for 33 treatments my treatment were over. That was in November of 03.
After having a clear scan 6 months later I still felt it wasjust a matter of time before it would return. 6 months later the scan showed a reoccurrance. I have been on chemo for 14 months
and for a year it held the beast at bay. The last scan in June 05 showed a new tumor in the same area as the original tumor.
I know my days are numbered and I am trying to live each day to the fullest. I believe "Early Detection" would have given me a fighting chance. I really never believed in my heart that I would survive long.
It's been over two years and I still feel fine. I have been lucky to have few to no side effects from al the treatment. I plan on being around misspelling my posts for quite awhile!!!

I wanted you to know the perspective of a stage 4
patiant that understands some make it and some don't. I concider the three years or more I have lived with this has given me the chance to love like I never loved before. I have met more cyber friends that have touched me in a way I didn't
know excisted. There has been alot of positives for me and my family
Thanks to this website and it's members my journey has went much smoother than I can express
in words. I truly love each and everyone I've met through this forum. Nothing can take that away from me!!

Love Ya All, Danny Boy

Daniel your post just brought tears to my eyes, My mom thought so highly of u,and I want so badly for u to be able to beat this. I too have learned to love like i never loved befor and to never take a day for granted.

My mom was a seven year survivor of this damn disease. She was given the speech of according to stats she was cured. I am not saying this to scare anyone but a year later she was diag with stage IV. I remember the Ent saying this was not related to previous Oral Cancer, i believe he was saying that because he missed it when he gave her the all clear.

I come here daily and it is because of all of u that i can make it through this. With each day there is new hope. Thanks to all.

Danny, you know how I feel about you. I will send you a private email. Keep Looking Up! Love, Carol

Hi Michael.
Been thinking about you and this horrible heat we had this week. It must have felt like you had chosen Houston instead of NYC.

How did the first day of treatment go? If the docs allow it, I would go find the best food available until you have to rely on that peg. Give us an update as to how you are doing.

Take care,
Eileen

Ok, Now you've Done it DANNY BOY!!!!!!

There is no way I can get the thread back on track now that you've posted here!!

I'm just teasing you, and that's dangerous on here, since you can't see me smiling and hugging you while I'm saying these things...

Truth is, I am SO HAPPY To hear from you...I've been lurking in the other rooms trying to find the latest info, and I appreciate your taking the time to weigh in here. We are all rooting for you! I send you warm wishes and lots a positive prayers.

As far as the rest of you...Whew!! I stay off the thread for a few hours, and WHAM-O! You guys post so much great stuff!!

----> Ok, for a quick update: TODAY was my first day of Chemo and Radiation.

I thought of each of you as I was scared, nervous, excited and relieved all at the same time.

Of course, everything went off with out a hitch.

Very compassionate teams here! Very gentle, loving, upbeat and supportive nurses, staff and Dr's.

The fill-in for my regular Med. Oncologist today said some optimistic thoughts, one I liked the most and keep reverberating is:

"There is a very strong chance you are virtually cancer free right now, and what we are doing here is EXTRA EXTRA icing on the cake!!!"

Boy he must know my hot button (took one look at me and he knew that , that hot button of course: FOOD! (especially any kind that involves EXTRA EXTRA ICING! :-)

Anyway, I thought that was nice of him to say.

I discussed with him the meeting I had with a certain chief of scientific research at a certain company making the new drug we are all talking about. I told the new Doc how this person said that I should PUSH HARD for the drug, and that it's my best shot at getting this beast.

The fill-in Dr said they know ALL about it! They were the main site for the studies, and the toxicity to them isn't worth the risk for the particular circumstances. He knows the guy personally and holds him in the VERY highest regard.

I said, well, if I am ever going to use it, I must NOW since it only proves effective when used with radiation and I can only get radiation once...

He said, "Wrong again...We are pioneers in this field too and I can tell you we are experts are re-radiation if it ever comes to that!"

So, I must say, I like his attitude.

I had Chemo starting around 10AM (NY time), and it started actually with 1.5 liters of saline (fluids) an antienmetic(sp?), and a dirruetic (sp?)...then after I measured over 1000 ml in output (urine) they started the actual Cisplatin (I think it was 127 ml, is that right?), Then, that was followed by another bag of saline and I was off to radiation.

Get this, after I walked in to the rad-suite, they escorted me to the elevators and said the Dr want's to see me, handed me my chart and sent me on my way. I finally caught up with her on a different floor, she was in the middle of a simulation for a new patient (esophogeal cancer), and brought me in to a room to examine my throat.

She said she had 'heard' that I had a feeling in my throat and wanted to see it for herself.

You might recall, I posted several days ago that she mentioned it looked weird to her on inspection the first time.

She said: "It looks so much better!...I agree with what Dr. Sh...(the ENT I saw on Weds)..said. In fact it looks MUCH BETTER than when I examined it last time.."

Then she gave me and Seth hugs and said not to worry. She pointed us back in the direction for the start of my rads...FIRST DAY!

The ONLY problem with the session was the fact that I had to pee so bad after ALL the fluids, even after I went several times prior to going on the table. But even then, it was minor and went by smooth and quick.

The team, 2 energetic guys (even at 6:30 PM), explain every step of the way what they are doing, how long each step takes and how long I have left in the mask.

They are careful, intelligent and serious, but also compassionate at the same time.

OK, sorry to give so many kudos on here to people most will not ever even know who they are, much less ever meet them, just thought I'd memorialize my thoughts here for when/if in the future I'm cursing them under my breath

I'm tired now, it's amazing how exhausting sitting in a chair for 5 hours can be..! (By my calculations we should be landing in Paris about now!)...Ohh laa laa! I'm off to find a croissant.

Hello Micheal,

I'm sitting here hoping you sail through the rest of your treatment with little or no side effects!!! You bring a freshness to this forum that is welcome. I have never seen so many replies to one posting. Without realizing it you have become a valuable member of this website. Once your part of this international cyber family your in for life. It's a tight band of brothers.

I wish you nothing but the best,

Love Ya, Danny Boy

Way to go Michael! I know what you mean about caring and compassionate, we thought the same when we went up to Sloan. However have found folks at Hopkins to be the same, I guess they all must understand what people are going through and do their best to be supportive.

Barry's finishing his first week of treatment today -- we have been moved to 11:30 on the tomo to avoid rush hour as we drive in from 45 minutes away (well, without traffic...) -- so far no side effects but it is early days of course. However take the advice to eat good food now! -- tonight we are having flounder stuffed with crab and shrimp, plus glazed acorn squash and garlic mashed potatoes. NYC is full of great food -- enjoy while you can. Hopefully neither you nor Barry will have to use that d****d PEG but still, flounder and potato smoothies...? I think not!

Gail

Hang in there!

Gail

Dear Michael,

I probably haven't posted in a year, although I have been reading the discussions here since my Aunt was diagnosed with Stage IV base of the tongue cancer in April of 2003. I had to write though because I do agree with Danny. Your posts have brought life and freshness to the discussions. I think your fighter/warrior attitude is wonderful (!) and I have been following your posts daily. You've made me smile a lot lately. Do know that all of us faithfuls who have been reading this board for years, even though you may not know us because we seldom post-are still rooting for you every step of the way. You are in my thoughts and prayers as I go through my day. I hope you can feel the positive vibes coming your way from Long Island!

For the generous folks who were in contact with my Aunt when she was sad and down from her struggle, my Aunt Rosemary is still cancer free after two years and three months. She had some reconstructive surgery done one week ago to cut many adhesions away from under her new tongue and the front of the floor of her mouth. They added some additional grafted tissue to her original flap and now she's talking almost completely normally. She is doing wonderfully well this time and is feeling pretty darned good already.
We are greatly relieved to say the least.

Keep up the good fight everyone! Every day is a blessing!!

Hugs to all,
Lisa from Long Island

Micahel you so crack me up sometimes. hahahahahaha You know I would love the icing too but alas I cannot swallow the cake. I don't like it without the cake. I am thinking it would not be to good in a blender. Then again I used to have a small cake baking enterprise for several years. Nothing but the finest ingredients in my baking and I do make some killer buttercream icing. Hummmmmmmmmmmmmmmmmmm:D

Glad to see you "off and running" for the victory. My voice is coming back today by the way. If you know any producers that would like a voice that sounds like something from a Star Trek alien let me know. hahahahahaha

Have a good night. Don't overdo and rest, rest, rest when you feel the need to. Since you "did" mention prayer then I will say....

My prayers are with you,
Barb~

I do a mean Darth Vader, or the penguin from toy story two... Oh the wonders of side effects
Sunshine.. love and hugs
Helen

Danny & Gail thanks for the nice words.

Lisa, nice to meet you! Thanks for taking the time out of your schedule to give us all an update!

It sounds like great news!!

You are so close to me in Manhattan...Whew...it's nice the heat wave is over, huh? If you ever make it to the city hit us up...

Barb, the icing is the best part of the cake! And, yes, I can eat it by itself :-)

And prayers are ALWAYS welcome and appreciated!!!

I've been praying much more lately for myself and everyone else here. I guess that's ONE good side effect, a deeper sprituality.

Update from today: Waiting for my puke to hit!

2nd day of poison and burn!

Everything tastes REALLY WEIRD, am sick to my stomach, and feel very "fuzzy". Have been having pretty bad heartburn too....

Already feel like my saliva is changing but I know that is very unlikely on only the 2nd radiation treatment.

At least they haven't killed me -- yet

The chemo was a brutal 6.5 hours today and over 5.5 yesterday.

Had a ton of fluids infused...Am VERY TIRED (already!)...going to try to sleep.

I can't believe I'm having some effects already! The nurse said since I'm having heartburn so soon I should expect it to be pretty bad

Glen, it was great to see you today briefly, you looked really good! (Much better than the first time I met you :-)

Glad the Computer Worm hasn't shut down this site!!!!

Love and Hugs to all...

Hi Michael --

Barry was having heartburn and sour stomach (lots of burping) after the PEG insert and this was exacerbated once he started to get the Ethyol (and probably not helped by the chemo either tho that's just once a week) -- we spoke to the RO and nurse yesterday and they prescribed Reglan (metoclopramide) which stopped it virtually cold. He had no bad stomach or heartburn today -- you take one 15-30 minutes before eating. Worked a lot better than Prevacid. The said they use it a lot in the practise. Ask your doc or nurse about it. Also, try not to let your stomach become empty even if you just nibble some dry saltines. And keep drinking!

So far Barry's taste is OK although he had a bit of a lingering metallic taste this afternoon but it went away after a salt/soda rinse and sucking a sugar-free candy. He thinks it's because he was negligent in drinking water (sipping, really) after getting back from Baltimore. Want to get that amiphostine out of the system so you have to keep drinking...but having swigged 24+ oz. in 90 minutes prior to the injections it is hard to get enthusiasm up for more H20.

He has also found Edy's 100% fruit ice bars to be great -- they come in nice flavours, raspberry, tangerine, lime, wild berry etc.

Do you get cisplatin every day?

Best,
Gail

I know what you're saying about H2o Gail...I had 5 liters or so over the weekend and of course a ton yesterday.

Today, I didn't even want a sip, and barely managed 2 liters all day.

I wrote down the med you mentioned, thank you!

Is Barry taking anything for naseua yet?

I'm going to pop a Compazene just since I'm still feeling queezy and about a 3 on the naseua scale of 1 to 10.

I feel sort of like I'm wasting a good pill since it's not horrific yet, but I just spoke to a Dr and he said I shouldn't be suffering, and not to worry about resistance to the drugs.

I have the same metallic taste, YUK~ But, I can deal with it...I notice if I swish mouth wash it's much better....Who knows what I'll be able to do by week 7 when I have my 3rd and last round of Cisplatin (it's 2 days of chemo, at the start, middle and end of the 8 week radiation cycle).

I was refused Amiphostine, so I didn't know about the H2O with that too, and what is Ethyol?

Sounds like his team is really on top of things and that you two made a great choice.

Thanks for the updates...please keep 'em comming.

Who knows how these things will go Michael. My Onc said I would get a sore throat and have to go on liquids in around 3-4 weeks. I got it in 8 days. As for the heartburn as long as I could swallow them I took a Zantak 150 in the morning and one around 6 in the evening.

Hope you feel better and no I will not sent you a tub of buttercream icing just because you like to eat it without cake. Well maybe after you get well I will. My son could not live without a bowl of chocolate chip cookie dough at least every 3 months. LOL

God bless and give you comfort and strength,
Barb~

HANG IN THERE, Michael.[and Seth]Amy

Barb, right now I wouldn't even want to think about eating

Starting around 6:00 PM here yesterday the naseua waves began.

Since my last post around 8:00PM, I've thrown up several times.

I took one of the Compazine, and it helped after a while for about 3 or 4 hours.

I took another about 5 hours after the first.

The heartburn has been outta sight too! Between it and the vomitting I haven't had more than a few sips of water, and am worried about dehydration setting in.

Rolaids doesn't touch the heartburn much at all.

I have a liquid Zantac, which helps a little after a delay.

UUUgh! I can't imagine how I'll manage to lay on the Radiation table long enough without puking today.... :-(

It's 6:40 AM here, so I'll call the Dr's office at 9:00 AM and ask about Reglan, I think that may be the best choice next.

I guess this is just the beginning...

Hi Michael --

You may want to ask about a longer-acting anti-nausea med -- Anzemeb or similar -- Barry took one of those (a sample) before one of the amiphostine days (he doesn't get amiphostine on chemo days) and it worked for much longer. He didn't need to take any other meds that day.

We also posted to the forum elsewhere and got some anti-nausea suggestions, one was acupuncture and I see from a flyer in our patient's package that Hopkin does acupuncture for nausea from chemotherapy (as well as for pain and dry mouth) so we may try this if Barry starts getting the "amiphostine persistent queasiness". I am a great believer in acupuncture since I had it for a neck injury. See if it's available to Sloan.

The problem is -- you have to get your meds before you are sick and this is hard as it can creep up. Best to take regularly. Take another Zofran 8 hours after first, we found compazine didn't really help that much. And eat what appeals.

One tip, don't eat a favorite food within 2-3 hours of chemo because if you get really sick your brain will forvever link the two and you will be "off" the food for a long time, if not life.

Btw, amiphostine is the same thing as Ethyol -- the latter's just Medimmune's trade name for the drug.

Hang in -- Barry's made it through first week and is feeling OK so you can do it too!

Best, Gail

Hi Michael,
John's about a week ahead of you with the same dx except left tonsil. He too did not get Amiphostine. He experienced the same things you describe the first few days- had a terrible fear of vomiting at radiation but the techs calmed him and got him through it. He took a lot of Compazine but I think what really helped was extra Ativan those first few days. He couldn't think about eating and lost weight - we didn't get the Peg tube til 3 days after the chemo which I don't recommend since he was already weakened (our fault - they recommended it earlier). It really gets better - he adjusted to the Peg (the burps go away) and the chemo effects subside. We're enjoying just going to radiation (no side effects yet) before the next round. What's working for him now is 3 cans of tube feeding (jevity 1.2) through the Peg at night via a pump slowly (75 ccs/hr). He then doesn't feel as full and eats whatever he can during the day - mostly high fat fast food to up the calories. Just wanted to say hang in there - you will get relief.
Janet

Oops,
Forgot to say we switched to Reglan (you have to stop the Compazine). I'm not sure if the nausea was going to subside anyway s/t time passing but the reglan did seem to improve John's symptoms of constant fullness whenever he ate even a little. It improves the transit time of foods passing through the system. Take care,
Janet

Michael, That "fuzzy" feeling you have is probably from the compazine. It definitely had that effect on me--only it was kind of like fuzzy x 3 because the regular compazone pills did nothing for me so I was taking compazoine suppositories. My chemo nurse said it affects a lot of people that way. Switching off comapzine to Zofran made that fuzziness go away.

Do be sure to take meds before the nausea gets bad--don't let it ever get really bad because then you are limited to something like a suppository in order to keep the med down! I also second the recommendation of taking an Ativan (in my case I justdid half an Ativan since it had a strong effect on me) about an hour and 1/2 before rad. Ativan helps calm your stomach but it also helps calm you in general and amde me much less anxious about barfing during radiation--even though the Amifostine made me nauseated all through radiation no matter what else was going on.

Anyway, I'm sure you've also been told that the first two days after chemo are the worst for nausea, then it starts to get better (though slowly in my experience). I hope it gets better for you quickly!

Nelie

I'm now on Metoclopramide (Reglan), 10 MG 3x daily, instead of the Compazine.

It seems to working a little bit better, but I am still throwing up and unable to keep even water down :-(

I had my 3rd rad tx today...was sick on the table.

I have some Ativan, so I might try that tomorrow before the 10:am rad.

This is so miserable, and the worst is yet to come.

Seth just made me some crushed ice chips, and I'm able to slowly nibble on this.

It tastes and looks like snow...(thank goodness it's not yellow

Hopefully, I can get some hydration cause I really REALLY dont want to go to the ED for another fricken IV!

Thanks for all the advice and inspiration to everyone on here!!!!!!

Not necessarily. Remember you are at the absolute worse point for chemo-induced nausea right now. What isn't working well at controlling nausea now might work better in the next few days (though I have to say they also tried Reglan with me and it didn't do much good).

Remember there's a good bit of experimenting with the combo. that works for you that may have to be done. I am sure those chemo folks have some other ideas up their sleeve if what you are on now doesn't work well. And do try teh Ativan but be sure you have taken it at least an hour and 1/2 ahead of time to get the full effect.

Hang in there Michael--you know you can come here and whine anytime and you'll be heard by people who have been there too. You aren't alone in this.

Nelie

oops.. you slipped another post in there. "not necessarily was in repsonse to "the worst is yet to come".

Also remember you can use your PEG for hydration. Just be sure the water you put in there is room temp--too hot or cold could make you more nauseated. Or try putting in hingerale--it had a slight queasy-stomach soothing effect for me even when it went through the PEG.

Michael --

What are they giving you as the pre-chemo IV anti-nausea drug? It simply may not work well with you (everyone's different). They must have some other options up their sleeves -- and you may want to ask about acupuncture. Ativan made Barry spacy and woozy (even taking just 1/2 tab) which didn't help his nausea at all so he's stopped it.

What are you doing to protect your mouth and skin from radiation damage? Or have you felt well enough to even think about doing anything? Barry's swishing with cold 100% aloe in mouth immediately afterwards -- if you do that don't swallow it if you are nauseous -- and then applying aloe or radiacare gel to skin, followed by Biafine. So far so good but it is only 6 days so a l-o-o-o-n-g way to go...

Gail

Michael, Pedialite [in the baby food section of the gro store] and Gatoraide are also good thru the peg or orally to help combat dehydration. Hope this goes away soon. Amy

Hi all! This is Seth, Michael's caregiver.

Looks like he's kept you all pretty much updated here and we are both greatful for all of you. I wanted to thank you and ask you some questions-

1) Any ideas what I should offer to eat for Michael at this stage and later? Soft foods, Jello? etc

2) Are there any other tricks we can use to help him get through this? Certain herbs, aloe, etc?

He may not be able to post as often since he is fighting the nausea. I'll try to check in here as often as I can. This has become my new full time job!

Thanks again to all.

Hi Seth, glad to see you! Full time job indeed and a whole lot of trial and error over the next few weeks. Based on my experience since April with my John, your #1 job will be to be sure Michael does not get dehydrated and is getting any pain meds he needs. This meant,to me, that I had to have a notebook, with entries -sometimes hourly- of what he drank orally, what went thru the peg, and what and when he took any pain meds. or other meds. Over the past few weeks, he has felt so bad that he could not remember what he had done during the day or night, so it's up to you. I logged cc's, calories, anything that went into him. We took his blood pressure 2 or 3 times daily[it got really low for a few weeks] Put your nurse's hat on and get ready for whatever happens next. I can tell you that I have cooked and thrown away lots of meals that John thought he wanted or could eat. The food part is trial and error. The peg tube part is NOt trial and error. Use it for lots of liquids and nutrients. If he is having trouble with it, talk to your Docs and get help here. Hope you have time to stick with us, the caregiver role is a challange and you will get lots of help here. We want both of you well so we can come visit. Amy

A cream that i used on my neck that all the nurses were very impressed with during radiation had emu oil in it and I have no scar or sign of even having radiation at this point and im 3 months post tx, www.emumagic.com and i used the theracare lotion. Wish there was a magic wand to wave and make it all better or speedier but there isnt. USE that peg when needed is the most important thing to keep hydrated and stay out of the hospital. If any hitches come up just message and there will be a bunch of replies with experienced replies on its way.
Best of luck and sounds like you have all your priorities all in order and some good help with you.

Hi Seth --

I am my husband Barry's caregiver and he is about 3 days ahead of Michael re treatment (at Johns Hopkins). Here are some tips we use to keep organized:

1) a sheet (by time) for what has to be done each day -- he has "radiation only" days and "chemoradiation days" -- he is getting amiphostine on radiation only days so (for example) has to start drinking 24 oz. water and take a Zofran by 9:30 am to be ready for the injections at 11:00 am (11:30 radiation). We have this all down on a list so he can check it, and whoever is taking him to Hopkins (usually me, but his daughter once a week) is responsible for cross-checking everything. We know as he gets more side-effects he will be more apt to make mistakes, so is checked on throughout.

2) We have (on the fridge) a checklist with boxes for each day, listing things he needs to do to take care of mouth and skin -- e.g. fluoride trays once a day, Thera-bite 7x a day, Biafine cream on neck 3x a day, etc. He checks these off and I also watch him, and check off. Several times I have had to remind or even push for him to do something as he's forgotten or is tired or queasy, and I know this will only get worse as the treatment progresses.

Right now he has no problems eating and drinking but I can see that soon we will have to have a "diary" of calories and hydration. Especially if he has to use the peg.

Now as to eating, on amiphostine days he does have a lingering queasy feeling and some foods do not appeal to him. Things that have tasted good to him -- luckily now he still has all his taste, it's going to be a lot harder when that goes -- are sweetened ginger tea (get at health food store), various fruit jellos, lime-flavored sparkling water, Cozy Shack rice pudding with raisins (mmmm), four-cheese mashed potatoes (comes as dry mix, add hot water -- not "gourmet" but very tasty and also, very smooth), French vanilla ice cream, and chocolate pudding. Quite an eclectic mix but he ate them and that's what's important! He did NOT like the way Boost or any of the other prepared liquid foods "sat" on his stomach and is off them for the moment -- they are very high in fats. Barry had his gall bladder out two years ago and too much fat in a food causes some problems, which we hope the recently-prescribed Reglan will stop this (it seems to). It keeps things moving through and helps avoid that bloated feeling.

If you have problems over the weekend call the oncologist on call at Sloan as they may want you to come in.

Good luck, be strong,both of you...
Gail

Hi Seth, I'm taking care of my dad, who has/had the same type of CA as Michael. He has completed 4 weeks of radiation and 2 chemos. I am in the medical field. My suggestion is to NOT offer things by mouth when nauseated as this typically sets off more nausea. He can get all of his fluids/nutrition via tube. I got my dad a cute little chapstick holder that he wears around his neck religioulsy and he carries water to keep his mouth moist. My dad is doing fabulously, now that he doesn't try to eat anything. He does swallow H2O and religiously does his swallowing excercies. NOW-in our experience, the moth sores came overnight and we were ill prepared. Meaning, we did not have the Fentanyl Patches and liquid Oxycontin. It took a week to get ahead of the pain.
A trick we use in the hospital for nausea post op is having our patients sniff alcohol pads. Strangely, it works. My dad is 100% better since he decided to exclusively use the PEG. Good luck Seth, you and I are in the same boat. I told Micheal that we are a couple weeks ahead. We have 15 treatments to go!! You 2 are in my thoughts daily.

Hi Seth,

My one suggestion that isn't a repitition of something already said is to encourage Michael to eat yogurt either by itself or mixed in with something--the kind of yogurt with active cultures. Those cultures in his mouth may help prevent thrush when his mouth starts to get dry.

I found very creamy soups, with yogurt, were about the lst thing I could eat before the mouth sores got so bad that everything was via tube.

Please keep posting and let us know how Michael is as time goes on--you are both in my thoughts (I know being te caregiver can be as hard as being the patient sometimes so don't forget to take some time for you in all this).

Hello Seth,

First, Everyone will notice I moved this thread to the "currently in Treatment" Forum because it is true and because this thread is very active and as a result we were missing some new member introduction posts. I hope everyone understands why I did this and continues to keep the information flowing in this thread.

Second, Seth, since radiation tends to make the sense of taste go flat and/or go wacky, it is good to boost the flavor of food with spices that agree with the patient. Not hot spices but flavor spices. You may have to experiment and try different combinations that appeal to the taste. I personally found that onion and garlic was good as well as Mediterranean spices. Almost any creamy soup can be "boosted" with protein powder and shitaki mushrooms are good for several reasons. If you like to make them yourself, there are organic soup stocks pre-made at larger grocery stores packed in cartons like milk. I really liked the free range chicken stock and the cream of mushroom stock. You can add anything you like to these and make really great soups or stews. If you want you can add your own vegetables and run the whole thing through the blender. With a blender you can turn anything into a smooth-swallowing meal. I suggest you not worry about fat and go ahead and add your favorite oil (olive, etc) to each meal you make. The oil adds important calories, helps with swallowing and is an important component in healing.

Hi all...

Glad to be in our new thread home here.

I'll send the new link to my friends and family who like to stay up on the latest too.

Well...I have GREAT NEWS, I think... :-)

As of 9:30 PM, last night ALL NAUSEA dissappeared.

In fact, I had a good night's sleep (after saying a quick thank you prayer:), and only woke a few times, which is unusal for lately.

I have been able to down a little more fluids (averaging a liter of water, milk, etc.) daily since the last chemo infusion.

Had my 4th rad burn today and can already feel some of the wierd effects.

Skin feels tight and warm, like a slight sunburn in spots, and it's awakened my nerves or something.

Here's the current "problem" :

Many might recall my complaint that I could 'feel something growing' in the Right Tonsil bed. Well, it was examined by the 2nd surgeon at Stanford, a premier ENT at Sloan and then again on Tues by the RO. They all agree that it looks like normal "granualized tissue" forming from the surgery, which is of course a relief.

But, the tissue has now started to tickle my gag reflex. I know it sounds crazy, but I've actually gagged a couple of times today, and not from nausea, but from this tissue back there.

So, I've been treating it topically with 2% lido (tiny dab with long Qtip), as opposed to the nurse's recommendation of more Compezine (YUK!). I really don't think that would help, except to make me so groggy and out of it, that I won't know it's happening... (Which may be quite useful down the road a bit)

So, I wanted to know if I'm the only circus freak out there with this weird problem -- misery loves company

Ok, so now I'll deal with the new tissue tickle on my gag reflex, and hopefully this will get better, not worse.

The nurse also said that the nausea departing will likely be temporary, since it usually returns on Days 3 to 5 from last infusion (YUK~!).

At least I got to eat some good foods today.

I can't imagine what the 3rd week and 6th week chemo is going to be like!! With all the mouth sores, pain, etc etc...EEEEkkk...The stuff makes me feel like they are pumping me up with Jet Fuel!!! :p

I have Aquaphor and a soda/salt rinse I'm using a few times a day.

I also gargle with Aloe, and use it in the Gtube to keep it clean. The incision site looks awesome. Very clean, fresh, no more puss or discharge, and it seems to be fine.

So, let's see...I guess everything is as expected except for the gag thing.

Sorry to ramble just wanted to get this out there, and hear how everyone else is doing.

Hugs to all, Michael

Michael --

Does your chemo nurse or MO have any suggestions for controlling the anticipated nausea for your next Cisplatin infusion? There are several newer drugs (which work on serotonin uptake) -- Zofran is one but there are others and not all work for everyone the same way. You might also ask about acupuncture.

For your neck -- try Biafine 3x a day -- Barry puts it on after Radiacare gel or 100% aloe gel -- allows this to dry then slathers on the cream. So far he has not had any burning sensation although certainly expects it to come eventually. When you get out of rad, try putting on cool gel and then the cream, and again at night, again in am and leave on until you shower and leave for hospital.

Glad to hear you can now eat and drink OK -- best of luck, TGIF!

Gail

Whew, I am happy to hear about your break in nausea, my thoughts are with you and Seth.

Hi Gail. As usual, great suggestions.

I'll ask about the Zofran and related meds.

I'm REALLY DREADING the next two chemo rounds, but the fill-in Dr said the Chemo is the least of my troubles comparred to what the Rads are going to do. YUK!

I'm alternating between Chorloseptic and the 2% liodocaine to reduce the gag. Hopefully it won't keep me up at night.

Shawna; what's the latest there?

Seth, tonite I sauteed to a "melt in your mouth" consistancy a medley of peeled yellow squash, zuchinni, garlic and onion in lots of good olive oil. John ate 3 hugh helpings. He can also eat tons of spinich, canned or fresh- steamed, and very creamy mac and cheese. When Michael's nausea is under control, maybe some of these will help him eat. Amy

Ohhhh, Michael. I could ramble on and on about the latest. I just don't want to over-run your thread! My dad finished his 4th week of radiation and 2nd round of chemo. He has no nausea-so at least we have that going for us. I just don't know how in heck I can get his butt to move in with me now!! He lives an hour away from the city-ALONE- and says he's not ready to come here yet. Basically, the tumor is non-palpable. He's on his Fentanyl patch to subdue the pain. That kills me because let's face it--he is very sensitive to narcotics. I want to tell you and Seth that if it gets bad, a break in treatments does wonders. His mouth healed wonderfully in 7 days and his voice was normal. That was good because it showed him that he will heal. But, today after the 20th treatment he sounds like he did when he hit the wall 2 weeks ago.
Please share the patient's perspective. I want to honor his desires as long as possible but I'm worried sick about him.
You 2 are adorable and I look daily for your posts. Soon, you will be able to coach us through the Neck Dissection!
Love and hugs.

Good News: No more nausea since Weds.

Bad News: I'm miserable.

I feel so fatigued. Exhausted. Like breathing is hard work.

I slept ok last night and have rested on and off, but can hardly move.

Nothing tastes even remotely good. All food is bland, and gross. Even plain water tastes like lighter fluid.

My tonsil bed is still making me gag.

I feel like I've been hit by a truck. My neck is tight, the skin on my face and chin feels like plaster.

This all seems so SOON! Only 1 week into treatments?!!?

I can only assume it's the effects of mainly the Cisplatin (low white cells or something)...?

I have hot and cold flashes at the same time, and I feel sore all over, like from the flu.

There is no way I can do this for 8 weeks.

Micheal
Listen to ME, you will do this as long as you have to... you WILL be here in 4 years time saying it don't seem so bad, and giving advice to the newbies...
Sunshine... love and hugs
Helen

Michael,
We felt the same way that first week. The next week was easier somehow - some of the chemo side effects subside and the adjustment to the Peg tube occurs. Hang in there. Trust. Scream if you like. It is really a tough thing you are doing. Don't beat yourself up. Just Be! We are connected and we are rooting for you guys.
Janet

Michael --

Talk talk talk to your doctor and nurses about your issues -- nausea, first and foremost -- skin and mouth care for radiation (what are you doing?). There are suggestions for dealing with taste changes (to a point), especially those resulting from chemo. You need to try to be active as there are a lot of studies that moderate activity during cancer treatment 1, reduces fatigue and 2, produces a better outcome -- that is, you recover more quickly. This is NOT easy but try. Also, identify each symptom and get some help, you have to be your own advocate I think -- at least, that's been my experience going through several family members' serious illnesses, including my husband's current battle with HNC.

Gail

Michael

You CAN do this and you WILL do this. We are all behind you 100%.


Melissa

Hang in there Michael (you too Seth. We are both praying for you. We watch your posts daily.
Ken & Keith

Michael,

There were many times along the way during my treatment when I felt that I couldn't get through the next X# of weeks -- however many there happened to be at that time. I found that I had to concentrate on what it took to get through the next 24 hours, each day at a time. I also found that I had to do as Gail said -- keep talking to my doctors and nurses about whatever was the biggest problem at that stage and see what they could do to help.

We're all here for you and know you can do it.

Cathy

Michael, Right now I am visualizing you sitting on on the beach at sunset, listening to the waves lap the shore and waiting for the moon rise, with the libation of our choice in hand. Put yourself there in your mind. Keep going, we are pulling for you. Amy

Hows it going Michael? I see your name at the top of the board today so how are things? Check in please.

Blessings,
Barb~

I'm here. Barely :0

I think I feel a teeny bit better this morning than yesterday AM, but am not sure. Maybe I'm just getting used to some of the misery.

I've failed to mention before a couple other symptoms, which seemed minor at the time.

I had had on and off ringing in either ear for a few days now, and last night, it got so bad, it acutally work me up.

It seems to alternate between R & L, and usually I just try to ignore it by turning up the TV or something. I know it's a side effect of the Cispl, but for how long? Does it get worse? How do we know, or what can be done, before it get's permanent..?

The 2nd thing is that my hands are falling asleep. Both the R & L sometimes, with painful pins and needles.

Luckily, I have some of the Nurontin left and it helps, but should I notify someone or is this normal too?

Other than these two things, basically, I am just beat up.

I have ZERO energy. It takes me several minutes to get the energy together to just type on the laptop.

The neck and chin still feel like cardboard, and my mouth is so strange. It feels wierd and tastes awful.

I feel like I spent way too much time in the sun.

Opening my mouth is work and just trying to stay hydrated is a major challenge.

I've used the PEG a couple of times, and am going to try using it more for hydration. Water alone makes me sick, so we are experimenting with Gatoraide, etc.

That's it for now, thank you to everyone !! I've read each post and feel a little more able to meet this challenge with every encouraging word. Thank you!!

Michael, Michael, Michael---you hang in there! We will do some major praying for you! You will handle it! From what I've learned here, this is all temporary--long temporary, but temporary!! Be strong, you will forge through this, you are strong and a wonderful spirit.
Minneapolis Shawna-

The bad part is yes you will learn to live with some of these symptoms but like we have said they will be temporary. Although they will seem to stick around for a life time and time drags by at a snails crawl. One thing to really watch out for and talk to your Dr. about is getting the worst symptom of depression. This is one you can do something about with medication and trying to stay busy and keep your mind occupied.
I finished my treatment mid wasy through may and still have the tingly fingers but it is getting better.
My ears too caused me great discomfort during and after the treatments but the Dr. would look in there and say everything is just fine and I would allways dispute him,"there feels like a gallon of water way in there". But that too has past and 0 ear pain for me since mid june.
Gateraid was my favorite through the tube also but i will warn you if you are vomiting alot it can really sting your throat, I was in tears many times from the acids burning and went back to water for those times I felt nausiated.
Good luck to you and were all here and have been there and done that, I know it doesnt take away what your going through but it does let you know it is doable.

michael hang in there it will get better i remember when i thought things would never get better but they do take care and god bless

Michael, You will get through this (and Seth, you will too--we do all know here that this treatment is hard on caretakers too), even though you'll have moments where it seems impossible. The main thing is to learn the trick of taking one day at a time and not trying to look ahread too far. Especially when you're at the beginning of treatment.

It's very possible that if your docs and nurses keep fiddling with your nausea meds, you won't have it so bad in the future. Don't give up on that--keep talking to them about what is working and what isn't! FWIW, I had ear ringing and pins and needles after each cisplatin treatment but only very rarely have some ear ringing now--and not bad (loud or long) at all. Also, I never had pain that got too severe all through my treatment (I did take--and am still taking--oxydose but it's a pretty low dose and I never needed the stronger patches or anything).

OTOH, you don't want to know how long it is taking for me to get rid of this painful mouth and mouth sores! Every day I wonder WHEN I will ever be able to get off my tube! We all go through the treatment and recover in our own way, I guess, is the moral of all that and you can't really predict how it will be for you (I was sure I'd be in more pain during treatment but definitely off the tube and with less mouth pain this far after--how's that for accurate forecasting?), so don't "borrow trouble" as a friend of mine says, just concentrate on this day and try to find something to enjoy in it, regardless of what else is going on.

We're all here for you.

Hang in there Michael, I am right with you. 8 treatments and a cisplatin chemo which has knocked me for six. (Cricket term for you baseball fans out there) I am trying to continu working all Night and sleeping during the day but with two kids that appears to be a no no and now it seems like they are coming down with things caught at Daycare which will put me at risk of infection too. I did not realise it was going to be this miserable so quick either and too think they may be a little more to come. Keep your spirits up we will get there.

As always I am indebted to each of you for the compassion and caring you exhibit in your posts to me. Thank you!!

Well...I made it through another day.

Today was in some ways the best and worst so far.

The extreme fatigue is immeasurable. I have so little energy I can't even put it into words.

Hydration helps, and I used the PEG a couple of times today.

The ear ringing is a nuisanace, but that's the limit of it. It troubles me, but I try to ignore it, and frankly am so tired mostly don't give it much attention. Is there a point at which I should bring it to the Dr's attention?

The weekend break from radiation seemed to help with the neck tenderness, and overall mouth issues, so I can tell I am going to look forward to Fridays again!

My skin is still like concrete and I have to force myself to move my neck. Is this ok? I am trying ROM exercises whenever I have the energy.

The saliva and gunk in my mouth is again, an irritation, but on it's own not yet debilitating.

The tonsil growth, which casues gag spasms, is more than just an irritation. It is distressing and a constant sensation.

The neuropathy in my hands seems to be limited so far to when I am sleeping, so I will just monitor this.

I stall haven't had the nausea really return, so I am greatful for this as well. I have some stomach upset, but not what I'd call nausea, and it's not too captivating. I think it may be a by-product of the chances in my sleep, diet and hydration patterns.

Food still tastes terribly bland. Even spicy food is blah. I suppose is that's the worst of the problems, It'd be ok.

Mostly, the exhaustion is what's bugging me. I feel like just breathing is a chore. I am only hoping that the total complete fatigue will get better between chemo.

My dad typically feels like a truck hit him the first week-week 1/2 post chemo. You'll get another energy boost. (may be short, but you'll get it...)
Thanks for updating, I think of you.

Spoke too soon.

Woke this morning with nausea.

Have been throwing up all afternoon. It goes in waves, but coupled with the shear exhaustion, and the gag in my throat it's pretty rough.

I've taken Reglan, but that doesn't seem to help much.

I have a couple Emend, does anyone know how well this works? I still have the Compenzine, but hate the way it makes me feel!!!

This is probably a real stupid question, but are you taking the nausea meds by mouth, peg tube or via suppositories?

Michael, I never tried Emend but I just wanted to say that I really hear you about hating how compazine makes you feel! Nonetheless, it may come to a decision between feeling compazine-fuzzy and throwing up nonstop. If it does, I'd advise you to tkae the compazine and get a lot of sleep. It's juts a couple of days probably -- remember that.

Have you tried Zofran yet? It worked for me when not much else did.

Amy, it's NOT stupid to ask. I have Compenzine suppositories (if needed), and so far I have been able to keep them down as needed.

I can take them via PEG when it comes to that too.

Nellie, I agree about the Compezine. I want to try Zofran and will ask for it tomorrow.

Hi Michael,
I don't believe Emend is prescribed for nausea and vomiting already in progress. It is taken to prevent it. I think it is taken before chemo and on Day 1 and 2 post chemo. If you are vomiting you may need a compazine suppository rather than anything by mouth. I am really sorry you are having such a miserable time of it. I know with my husband there was a huge anxiety component with all the changes occurring in and around him and his felt lack of control. Any luck with Ativan? Anyone suggest Benadryl? We are using a continuous pump for nutrition at night that allows John to not worry as much about hydration/food during the day on his offdays. What is the reason for the gag problem/tonsil problem? With your gag problem/lack of appetite, you might want to ask about that to increase your energies. Keep a good thought for us - John gets his second chemo tx tomorrow.
Peace, Janet

Michael --

Wow, I cannot imagine why they did not give you Zofran (or similar) from day one, with such a strong emetic drug as Cisplatin! Barry's getting Carboplatin, also a very strong emetic, and was given a Zofran script a week beforehand (he also uses it for the Ethyol) as well as a sample of Anzemet which is an even more expensive drug of same type. The downside is that they are all very expensive -- $30-40 a pop for Zofran if you do not have pharmacy coverage. (Or buy it in Canada <gr>)

Our chemo nurse says that these new anti-nausea drugs are "complete breakthroughs in treating chemotherapy nausea" and work on the serotonin uptake system in the brain. They can be taken with Compazine as they operate in a different manner -- but Barry tried the latter and didn't really like how it made him feel, a familiar complaint. He uses Reglan before eating and that and Zofran seem to control the (Ethyol) nausea. He gets a strong 24-hour IV anti-emetic on chemo days (Wednesday) and so far has not had to take anything else --

Just tell the nurses you need more effective anti-nausea meds and insist that you get them...

Gail

Michael and Gail,
John actually got Emend for 3 days which is the serotonin uptake nausea drug I think you are referring to (also in the same class as another antinausea drug called Kytril). He still felt queasy and nauseaus for several days but never vomited with the first dose of cisplatin. Emend costs about $100 per pill! We start another round of Emend for 3 days and Decadron for 5 days tomorrow with our next adventure with chemo and will use ativan and compazine as backups. Hope soon we will be talking of pleasanter things than N&V (we'll probably move on to constipation)!
Janet

My dad took Emend and had/has NO NAUSEA. That is one of our positivies-works wonders for him.

Hi Michael,

I also took Emend plus Zofran and, I believe, Decadron (at least I know it started with a "D"!). Anyway, although I felt nauseaus for a couple of days after chemo infusion, I never threw up. Keep asking the doctors about different meds. As you can see, each med works differently on each person.

Good luck and hang in there. It's a rough / tough battle, but one worth going through!

Hugs, Nancy

I forgot about the decadron. They also gave me that during and after the second chemo (once it had been established that there was a whole bunch of stuff that didn't work from the first chemo). Decadron is a steroid, however, if I'm rememebering correctly, which means it will make you feel better but then you may feel worse after you go off it later (which I think was true for me too but thre was so MUCH making me feel bad then).

Zofran is expensive. My insurance covered it but the first time I got a scrip filled, my pharm insurance had just changed and they couldn't find me as covered in the computer so we got to see what we would have been charged for 20 Zofran pills had we not had insurance before the glitch was fixed....$900!!!! I suspect that some places don't presrcibe it at forst because some people don't need it--they respond fine to the other anti-nausea meds that are not so expensive.

Yes, it is very expensive and for folks on Medicare, at least until next year, a problem BUT...it is really important that people get through their treatments without breaks as much as possible, and without getting into a really debilitated state -- so compared to other things most of us might spend money on, it is cheap! (And we are both retired, Barry on Medicare, I have state pharmacy insurance but it doesn't cover him -- so we completely relate to the issue). Dealing with Cisplatin, one of the very worse offenders, I think that the need for the best anti-nausea drug should have been anticipated. Can't imagine anyone doing it on Compazine, maybe some have but...

Interestingly, the serotonin drugs apparently do not work well for situations like seasickness, whereas compazine does.

Zofran is about 1/3 to 1/2 the price in Canada -- btw.

Gail

Zofran (you're right all, very expensive!), seems to deaden the nausea by about 50 to 70% so far, so hopefully it will contineu.

The fatigue is still cripling, and now I am having a problem swallowing. I think it's combined with the "gag" problem and creates more misery.

My neck is sore and tender, and my throat is very tight feeling.

Guess it's expected until the next chemo...uuugh!

I can't get my brain around a $900.00 perscription. Perhaps we need to be, as a group, lobbying like mad for answers to why these meds cost so much. Amy

Michael --

Don't think about the cost, just pop another Zofran 8 hours later if you need it. You can also (per our Dr.) take Compazine as a back-up as it does not operate in the same fashion and does not interact negatively with Zofran, although check with your own Dr. or nurse on this of course.

What are you doing for your mouth (inside?) -- try gargling with cold (pure 100%) aloe vera and also, use Gelclair if necessary. Assume you are using Radiacare gel or aloe, and then Biafine on the outside of your neck.

Watch for infections in mouth as it's getting radiation and your immune system is getting compromised due to the chemo -- Barry got a thrush infection (caught almost immediately and he is responding to Diflucane but still made back of mouth very sore so it was painful to swallow.)

Try to get moving a bit, even short walks now that the weather is better as it is necessary to combat fatigue. Drink lots of water to facilitate getting the bad stuff out of your system.

Good luck, Barry is on week three as of today!

Gail

Hi Amy --

I missed your post -- I agree, it is awful -- Barry's prescriptions for first two weeks totalled well over $1000 -- Zofran, Gelclair ($300!) plus Diflucane -- luckily he had state of Maryland Senior Prescription Insurance Plan which gives folks on Medicare $1200/year -- this was running out but covered a lot of it, and his country has a senior Rx card that also gives some discounts.

In our town we have an outlet for drugs from Canada (hah!) and went to check -- the 20 Zofran ordered here and delivered in the sealed bottle as they came from Glaxosmithcline would have cost $400 -- less than half-price. On the Internet, even less (about $15). Of course Canada negotiates drug costs. Ironically, a social worker at Hopkins suggested buying drugs from Canada as she feels that it is a safe as buying from mailorder here. However, we haven't done it yet.

Gail

When I'm puking my guts out I couldn't care less about the cost.

I'd mortgage the house to get relief :-)

In fact, today, I woke again with nausea, and just took a Zofran about 30 minutes ago.

It does seem to curb it, but not completely.

It's been 8 days since my last chemo, shouldn't I be done with the nausea by now????

It's so debilitating.

Last night my neck started really bothering me. It hurts like a massive sunburn. The RO said to use Aquafor, and it's basically just like petroleum jelly. Very messy, greasy and feels very weird to put on.

Also, I have a sore thorat, and very strange feeling in my throat.

I know everyone MUST be sick of hearing all this, especially the gagging I'm experienceing on the tonsil.

It keeps getting worse.

The wierd mouth gunk is a little better today, I think the saliva is reducing.

It is tough to swallow and I have some canchor sores in my mouth.

So, I've made an appt with the RO today. I'll go over my issues, but I don't expect any real news.

What do we do when it get's too bad? I can feel the tissues in my neck and throat turning to mush. Do they just drug me up so much I don't care..? Does it hurt too later? What happens if you can't swallow?? That would freak me out I think.

Michael I am so sorry you are going through this. Just try and hang in there and know there is "an end" to every beginning. Once you hit the half way mark it will go faster than you think. Once treatments are done that "sun burn" will heal up quickly.

I wish I had some answers for you but alas I do not. You are daily in my prayers dear.

Blessings,
Barb~

Michael, There really is light at the end of the tunnel. Altho, no one could tell me that during the last couple of weeks of radiation! I did not have chemo, but the radiation pretty much kicked my butt. I am praying for you and Seth, God Bless, Carol

Michael,
I must have mentioned this before but Zofran is really only effective for the first 3-5 days after a chemo Tx then you must switch to another anti-emetic.

Towards the end and after Tx, I puked so much I polished my teeth like glass from all of the acid. It's a miserable experience and I hope yours isn't as severe but I am living proof that you can survive this hell.

I never thought that I would use the compazine suppositories but I was really grateful I had them and went through several boxes much to my surprise. There are other antiemetics, as well, that are as effective as Zofran. Are you taking antacids? that may help as well.

Practically anything can cause the nausea, constipation, narcotics, chemo, radiation, mucositus, inflamed stomach lining, etc.

Be sure to keep hydrated especially after you get sick.

Michael --

I asked what the chemo folks at Hopkins use pre-treatment and they use Anzemet -- OK, even more expensive than Zofran but it lasts 24 hours (8 for Zofran), Might want to ask about it.

Barry uses one Zofran before each amiphostine shot and they are still working for that after two weeks.

The also do acupuncture at Hopkins for chemo nausea and they may also at Sloan --

Gail

thnx everyone.

zofran is holding it's own 4 now, but i have been vomitting almost non-stop for 24 hours.

its not nausea. it's from the gag thing. i can't handle this anymore. i cant keep anything dow, even water, and w/every rad tx it gets worse

again, its not from nausea per se, it's from the rad area doing something 2 my gag reflex...ive thrown up so much i am seeing doublre with white spots.

Hello Michael. I hope this finds you feeling better. How is it going with your G tube? Please be sure to monitor it well. After coming back to Moms house from a weekend away, I noticed fluids were coming out of the "hole" when I fed her. Long story short, it had pulled out and was replaced the same day I called the Dr.

She began Chemo the next day. Had Erbitux first 2 treatments and was given compazine which has worked well. This week, she had erbitux and cisplatin on Tuesday which took all day and a simulation after that. I had made arrangements for a motel up the street from the hospital...and glad I did too!

She was given Zofran and Dexamethasone to start taking the day AFTER for 3 days and was told to still use compazine if needed. Since she is a senior on medicare/bluecross bluesheild without any prescription coverage you can imagine my shock when I went to have it filled!! Heck, I thought the liquid cipro was expensive when I filled it after the new tube, that was just chump change.

She started radiation on Wed. Mom can no longer wear her dentures (or eat) so I'm not sure what all are talking about the therabite system? However she also has a constant feeling of something in her throat. Matter of fact, she has woke up several times "spitting up", not due to vomiting but because the mucus/flim gets stuck in her throat and she can't get it up the rest of the way like most can to spit it out.
We were told today at tx that there is a machine/pump that can be used to clear it out but we need to talk to Doc. about it.

She is also using the biotene, says it takes away a film from her mouth. She is also using Nystatin for a fungus on the tongue...another pretty penny! We were given radiagel today but am not realsure if we use it now before the skin gets bad or what..well have to ask again tomorrow.

Pain management was sooo important before this all began and she don't really like what all the meds do to her (comazine included) but she is damn determined to fight with what little energy she does have, and I fell you will too!

One thing I would like to know is how in the world do I go about getting the Zofran cheeper? And should I get her the 100% aloe vera gel or boofine?

Please keep up your determination and spirit.
Mom and I have come to the conclusion that when she stumbles we'll laugh, it is either that, or we'll spend too much precious time crying!!!

Your in my prayers,
Dee

_______________________________________________
Caretaker to Mom> Unresectable stage IV SCCHN
T1-3, T4, N0, N1, N2-3

Hi Dee --

Use the Radiacare gel now -- the info sheet with the stuff we got says to start using "as soon as possible" -- the gel and the 100% aloe work about the same (the Radiacare is about 90% aloe anyway) -- the Biafine is different and should be used *after* the gel. If yu use 100% aloe, it feels really nice to be put on cold (but not icy). The Thera-bite system prevents trismus -- it might be a problem if she has mouth inflammation as there are "bite-pads" which fit your upper and lower tooth curve and which you bite on as the device slowly opens the jaw.

The best advice -- every sysmpotom -- ask (nay, demand!) attention to it and do not be afraid that they will think you are "whining" -- hey, THEY aren't going through this!!!

Well, gotta go -- the tomo machine is UP again and we have to leave for the "Hop" (or as I called it in my graduate school days, "the John" )...

Gail

Michael -- sounds as if your throat irritation is causing a gag reaction -- ask if there is something else they can do as I am not sure an anti-nausea drug will help here. You are going to get pretty debilitated with all this heaving not to mention down in the dumps. Again, ask about acupuncture as it will work for these odd nerve impulses. One of the anti-spasmotic drugs might also help. Maybe also try some GelClair?

Michael,
When was the last time these drs scoped you? Is it possible there are any stitches back there still? These drs need to get a handle on this gag problem. You have to be able to keep fluids down. The more water you can drink, the faster the bad stuff from the rads passes through your body. Read Gail's suggestions in previous post and get these drs to resolve this gag problem. If you are too sick to argue with them, get Seth to do it.

I feel so badly for you. Hope you are feeling better today.

Take care,
Eileen

ive been scoped a couple of x in the last couple of weeks.

the stickes are a good idea, i remember the surgeon saying he used all absorbable kinds.

the gag is too much, the drs say tehy have no ideas, only Compezine which doesnt touch it. it gets worse w/ea rad tx

they say anything they use could cause me to aspirate since the gag reflex is the naturual prevention of swalloing into my lungs

Michael, are you using your PEG enough? It will truly keep you alive if the gagging doesn't stop, and if your throat gets worse during the rest of the tx. Keep fighting. Amy

thanks Amy. The problem is I vomit with or without using the PEG since it is a gag reflex and it doesnt matter how I eat right now.

Michael,
I have no suggestions but think of you often and pray things settle down and you get a reprieve from these symptoms. I hope Seth is OK -it is so hard to be so helpless seeing one so uncomfortable in an unexpected way.
John has been hiccuping since Tuesday - he tried a thorazine today - got a few hours sleep. How are you being hydrated?
Peace,
Janet

YEAH!! It's the weekend again!

Finally, had a good day today. I have a serious sore throat, and I think some how that is arresting the gag reflex somewhat. So, as long as I concentrate on not gagging, it seems manageable for now.

My taste buds are SHOT! I had fried pickles with Tabasco tonight, and I couldn't taste ANY of it The Tabasco didn't burn (I expected it to), and I couldn't even tell. I added salt, nothing. I added pepper, nothing...I had an onion ring, again, nothing...I can taste/feel the fat, but like some cruel joke or something, I can't taste any flavors

Oh well, guess I should get used to that. Not the worst of all the problems I'm sure.

I hate the soda/salt gargle...it tastes especially bad!! How soon do I need to start using it religiously ?

I have the "miles mixture" (they call it magic mouthwash here), but the mouth pain hasn't gotten bad enough yet for me to use it...I definiately have mouth sores, and a sore throat a bit, especially BAD when I first wake up, like a massive strep throat, but usually subsides after a while....

I have a slight problem taking a DEEP BREATH, like I might be getting some lung thing! So, I am going to ask for an XRay Monday to make sure I dont get pnomonia (sp?), and the only other wierd thing is I am SEEING DOUBLE...Especially when I lay down on my right side and try to watch TV...So strange....

I normally wouldn't be worried thinking its from all the meds, but I haven't taken anything in a couple of days, but the double vision is just getting worse...

That's the very latest. Thanks to everyone!!!

MMMMkay, Michael...fried pickles with Tobasco? I feel relieved knowing that you must feel a little better trying such interesting cuisine. The only thing my dad will attempt is flat and warm Diet Sprite. My pops didn't need the soda salt until 3 weeks in. We have 10 more radiations to go, he's nursing his neck with the Bifiane that Barb suggested. He forgot all food after the 3rd week. Hang in there, we have the neck dissection before us. What's up with your visual oddity? What meds are you taking?

No wonder you're gagging! Think bland diet - you're not going to taste anything for a while anyway.

I hate to tell you the bad news but most of us gagged a lot in the later and post Tx phase. Some days will be better than others as you have experienced. Mine went from fair to horrific. I spent a lot of time in a fetal postition on the bathroom floor by the toilet. I seem to remember that my vision was screwed up as well towards the end - I even flunked a vision test at the DMV. It's fine now.

Michael,
It was good to hear from you - funny how I get a little worried when you don't post as often! You made me laugh with your diet attempts. John's hiccups did go away with the thorazine (although I think they were going away by Friday anyway). The challenge of the moment is weight loss. I thought it wouldn't be a problem with the peg tube and I could just load him up at will but he feels full and bloated a lot and resists more than 4 cans of jevity even if given very slowly. Last night he had a lot of residual in his stomach so I couldn't even give him the normal tube feeding amt. What's up with that? He burps more with the feedings or when he swallows food (yogurt, liquids, shakes). But we're halfway through and yesterday I could see that most of the chemo effects were gone - he just seemed himself again. Take care of that true part of you that is you. These various symptoms are a pain but what I resent most about them is when John doubts himself as loved and lovable because of them or when he feels weak or a failure because he is down with one symptom or another. Let's face it - they're throwing everything but the kitchen sink at you guys and you're taking it.
Peace,
Janet

I agree that by next week (week 3) I will most likely be on fluids only and soon after problably be relying on the PEG exclusively.

My family is here, and we went to a rough and tough BBQ last night in the meatpacking district. I haven't had fried pickles since the 80's in Austin, TX, so I HAD to try them. They were not too crispy so I managed ok, just dissappointed I couldn't enjoy them. (all 3 that I had:) The Mac & Cheese went down easier, but again, tasted like eating a styrofoam cup.

My sore throat is severe enough to restrict my diet to softer foods. Nothing like crackers, bagels, etc.

But, I am trying to eat as much as possible since I know I can't afford to lose anymore weight (Ive already lost over 20 pounds).

Eating actually helps the sore throat a little still, but I know it will be the opposite soon.

I get the next chemo (YUK!!!!YUK!!!!YUK!!!!YUK!!!!) the day after Labor Day -- The Doc has offered to hospitalize me for 2 or 3 days if I prefer...I haven't decided yet. OF COURSE, I'd much rather be at 'home' each night, but he makes a good argument that sometimes a different setting can break the cycle of the side effects, plus constant hydration and well regulated anti-emetics make a good argument for it. Does anyone have a comment?

I think I have the gag thing under control with mental imagery and the pain as a distraction back there, but I hear you guys that say it can get much worse...UUUgh! There has to be something that can be done?!?!? Maybe accupuncture..?

I had accupuncture last week (Monday) for nausea, it seemed to help a tiny bit, and I'm going back this week, and then again after chemo. I've heard some people have good success with this.

Sloan has a great Integrative Health Center just up 1st Ave. It's like a 5 star spa inside, and we met last week with their director of nutrition, who is very open minded to complementary medicines.

I still have lung pain, and will followup with the Dr on Monday since I am worried about getting an infection or something during tx.

Hi Michael,
Sounds like people are really offering you some great alternatives to ease the way. I want John to try Reiki. I don't think gagging has been a problem for John (end of week 4) so I wouldn't assume you will have it. It seems that there are a lot of similar reactions/symptoms but not necessarily to the same degree. Since you asked I'll weigh in on the hospital stay question. I as a caretaker would love the option of a 2 day stay post chemo for John. That has been the most trying time so far for us mainly d/t worry if everything that can be done is being done to ease his symptoms. At least in the hospital, you'd be assured of IV hydration and access to someone who could witness your reactions as they occur. I'm a nurse but it's awful to be so uncertain in this arena as to what's to be expected, tolerated or treated. I'll have to ask John what he would want in retrospect. I would want to stay at the hospital too to be with him -I'm aware hospital staff can only do so much. Enjoy these days- the Spa sounds wonderful - today is a good day here.
Peace,
Janet

I didn't stay in teh hospital after my second chemo (it wasn't offered as an option) but I did go to the med oncologists office for extra IV hydration every day during that week and so they could fiddle with the anti-emitics as well. If you do't go to the hosp., you might see if you can make that kind of arrangement ahead of time. Of course, I was dealing with nausea from the amifostine too and so I ws sick from that, even when the nausea from the chemo seemed to be held at bay.

I think in your case, the hosptial might make sense, though, since you have been having such a hard time of it. How is your white blood cell count? Hopefully there are good precautions in the hosptial protecting you from other diseases. That is the only thing I'd worry about, is catching something else there.

I'm glad you're feeling batter and had a chance to actually get out a little, and to see your parents too--but do keep track of your WBC when doing things like that too. believe me, the last thing you want is coming down with some other kind of flu/infection/virus just becaue your WBC is low. That could really throw off your radiation schedule.

Good luck, Michael, I'm thinking of you and Seth.

Nelie

My father was totally fixed after his hospitalization. He does get admitted for the overnight when he gets his Cisplatin. Yes, we dislike it, but we bring in our own lighting, a big screen laptop with wonderful speakers and movies. Luckily, we are able to get a private room and they roll a bed in for me that I adorn with chenille and faux fur blankets. Its all good. The continuous IV fluids are awesome too. We have NON hospital food delivered, although we eat it out side the room so my dad doesn't have to smell it. He is finding that the smell of food is really offensive. The downside is that no matter how comfy and like home you make the room, you DON'T get any sleep at a hospital what-so-ever. Loud beeps, loud RN's lauging at the desk, overhead pages, random staff wandering in and out, you know. I would suggest asking about a home care infusion RN to come out and bolus you with some fluids-It's no big deal, they just pump fluid into you.
10 more rads to go for us, it is SO awesome. You'll be at this point too---

Michael, I'm glad you're feeling a little better. I've been worried about you too.

I find it interesting that you said the Integrative Center at Sloan is like a 5 star spa. The Integrative Center at Moffitt just opened this year and they've colocated it in the same building (separate from the main hospital building) with psych services. They mainly offer acupuncture, therapeutic massage, and yoga classes as I recall. They were just in the process of hiring an acupuncture doctor when we stopped in to see them last February, but we did get the benefit of all their interviewing and Jerry hooked up with the acupuncture doctor they intended to hire even though she wasn't on staff yet.

Thanks for sharing all the information you've picked up traveling to different centers across the country and meeting with different doctors. I like to hear what they are doing at the #1 CCC in the country as well. I find it fascinating (and somewhat troubling) the different treatment options and standards from center to center.

Good luck next week. I'm sending healing thoughts your way.

Connie

Hi Michael and Seth,
Don't see either one of you logged on the last couple of days and neither of you has posted. Little worried about what is happening so give us an update when one fo you gets a chance.

Hoping your are feeling better and the GAGGING is under control.

Take care,
Eileen

Hi Michael, I am like Eileen, a little worried, haven't heard back, are you doing okay? Carol

Ditto-

Ditto, ditto

Hi Everyone this is Michael's sister Heather using Seth's screenname since I am visiting him this weekend... Just wanted to give all of you an update since Michael has been so sick.

Michael has been vomitting from the the gag reflex and phlegm. However, last Friday marked his halfway point in treatment. Total weight loss to date is 30 lbs. His hearing test yesterday showed hearing loss in his left ear. He is losing his hair and his goattee. He also tried acupuncture a couple of weeks ago and is going to try that again! That sounds horrible to a person that is PETRIFIED of needles!

Nothing seems to help the gagging. He has tried everything... anti-spasmotics, Neurontin, Adavan (Sp), Compazine, Raglan, and Zofran. They are helping w/the intermittent nausia, but NOTHING is helping with the gag issue. I saw him eat part of a banana this morning, but he has not eaten anything else all day. They have been using the peg to keep him hydrated. I am very worried.

He has not gotten up all day. He is completely exhausted and wiped out. Tonight he was had severe chest pain and is now concerned about his heart. He gets chemo starting on Tuesday. We are all very concerned because he is already so ill. I don't know what to do. He says that nothing tastes like it is supposed to. At times, even the mention of anything makes him sick. My brother is very weak. This is extremely difficult to see Michael like this. He is the person that I run to for support and now I feel almost entirely helpless, like there is nothing I can do to help him feel better.

I want to thank all of you for your continued prayers and support. I know how much all of the advice and support means to Michael. His spirits seem alright considering. I just wish there was something that could help w/the gagging. Once again, thank you all for all of your support. I will try to post again tomorrow.

Oh Heather and Seth -- I do not know what to say -- continue to be strong for Michael, yes, but I think you also need to sit down with his medical oncologist and discuss a Plan B if he gets too sick -- is this a reaction to the cisplatin? (I have heard of a couple of similar situations with cisplatin -- (one recently elsewhere on this forum) -- a birdwatching friend in Australia is also going through a rough time with HNC chemoradiation using cisplatin and we just heard that they had to put him in the hospital on IV for a number of days as he was so constantly sick.

Encourage Michael to try the acupuncture again -- he might have to do it 2x a week for a while -- I asked our medical oncologist and she said that they have had good luck with it in cases of nausea or pain not responding to the conventional drugs.

We will keep you in our thoughts and prayers,

Gail and Barry

Barry: Dx: 6/21 Stage IV right tonsil, base of tongue, HPV-16+, in 4th week of chemoradiation (tomo-IMRT and carboplatin)

Hi Heather, Seth and Michael, Hang in there. All of you. This too shall pass.

I am concerned that with all the bad reactions he is having otherwise to Cisplatinum, his blood cell count may also be low. How is he doing with that? I had pretty bad nausea with cisplatin, and some gag reflex nausea too, but not nearly the problems Michael is having, but it turned out the biggest issue was the cispatinum pushed my WBC so low (to the point of neutropenia)that my second treatment was delayed almost a week and my third would have been delayed at least two weeks--at which point (raidation had ended a week and 1/2 before) both the rad oncologist adn medical oncologist agreed it was not worth doing (especially since I was just recovering from a fever from some unknown infection at that point).

So, like Gary who often posts here, I only ended up with two chemo treatments though I was supposed to have three. I'm not too worried about this, but that's in part because I had a stage II cancer and the chemo recommendation that I followed was thought to be (at least on this side of the Atlantic), super-aggressive treatment for a stage II to begin with.

In Michael's case, I would think it's much more important he get three chemo treatmetns so the chemo can keep acting as a radiosensitizer and he will get himself the max. benefit from radiation. So what Gail said, I second. Talk to his medical oncologist about what Plan B would be.

You all are in my thoughts.

Nelie

Please, please, Heather and Seth, get him off the Cisplatin! I was pretty sick with that and had hearing issues, which I was told by one oncology doc would become deafness if I continued on the Cisplatin. I was a stage IV, and was switched to a mix of Carboplatin and Taxol, which I had four times with no nausea or any side effect exect hair loss, and that grew back. I am more than three years out and doing just fine, so the second chemo mix was effective and much easier to take. As a much older doc said to me when I mentioned the hearing issues, "Won't be much good to cure you if you end up deaf as a post." Don't know if I completely agree, but you sure don't want a deaf brother/friend. I am very serious about this and encourage you in the strongest way to take action about this at the first opportunity.

I just really appreciate the update, it means alot. I was really concerned, thank you.
There are other options out there. I could see continuing this if he was less symptomatic. I guess I'm shocked that his health care team hasn't approached this? So many prayers for you.

Michael, Seth and Heather,
Thoughts and prayers with you. Sorry Michael is so sick. I can't believe myself how sick this treatment makes one. John has zero energy and not eating. He resists and won't take more than 4 cans of tube feeding a day and losing weight. It's hard to know what is to be tolerated or needs to be evaluated. I feel between a rock and hard place on what I'm told he needs to be doing and what he is capable of doing. He sure can't swallow the fish oil pills the doctor keeps pushing! He is starting the gag problem that Michael has had for awhile now. I wonder if the chest discomfort Michael has might be in the esophagus - that is where John feels changes especially when he tries to eat. (He is on a similar treatment as Michael - has had his second chemo).Heather you are not alone in feeling pretty helpless watching him change. It sure sounds like Michael deserves evaluation before another round of chemo.
Peace,
Janet

Michael, Seth and Heather, My thoughts and prayers are with you. Oh my gosh, I am sorry to hear how sick Michael is getting from the treatment. Heather, thank you for posting, wish I lived closer to help in some way. Take Care and God Bless, Carol

Heather and Seth,

I am so sorry to hear that Michael is this sick. Just so you know, not every H&N patient has had chemotherapy along with radiation. My husband has a risk factor for chemo that the chemo oncologist felt was greater than the ~10% added survival factor warranted. So he had surgery, a neck dissection, and IMRT. We used every kind of complementary medicine ever shown to help with side effects. He used acupuncture before radiation began (for nausea, pain, anxiety) and is still going. He did Guided Imagery and auto-hypnosis specifically for healing cancer and relieving stress. He took a few supplements that we saw recommended on Dr. Andrew Weil's website (the Vitamin Advisor) for patients going through radiation/chemo. He had a very easy time through the majority of the IMRT treatment. We both realize and wonder whether the absence of that ~10% incremental survival rate is going to bite him in the future. But the decision was made and we're happy at this point he didn't have chemo due to his risk factor. Now that he is eating again, I'm getting ready to start preparing a cancer prevention diet based on info I've found on Brian's Cancer News section and a few other sites. My only real point in saying all this is that if Michael needs to quit the chemotherapy, I (personally) wouldn't sweat it too much. I'm pretty sure there are a lot of people on this forum who might disagree with me, but I thought I would give you one perspective that might be unique (for better or worse).

Take care, and I hope things improve soon.

Connie

I think the main problem with a lot of people is the use of cisplatin -- my husband Barry is getting the newer platinoid drug (carboplatin) which acts in about the same way as a cancer radiosensitizer and is FAR less toxic, as well as being easier to administer. When people ask him how he's handling the chemo, he says "it's been a non-issue." There is less data on efficacy, which is why a lot of doctors still use cisplatin. Barry was willing to take the chance...

An aside. Last spring we gave (palliative) chemotherapy to one of our dogs who had breast cancer. In discussing which drugs to use with the veterinary oncologist, she strongly recommended using carboplatin over cisplatin (although it was more expensive) because of cis' s toxicity and reaction issues. In other words, don't use this on a dog. The dog got carbo and had no problems either. So we were already alerted to the issues with cisplatin when Barry's cancer was diagnosed.

His problems with treatment have primarily been with the radiation, such as mouth and throat soreness, thrush, etc. as well as fatigue although that's not been too severe yet (he's only finishing 4th week).

Gail

We ended up staying 6 hours last night at the Urgent Care Center, because Michael had a temperature of 101.1, and the on-call oncologist said that if the temp goes above 100.5 that he should come in to be seen. They also were concerned that he might have a blood clot in his lung (a pulomonary embolism). He had a CT Scan done, but the B-team screwed it up. The contrast got back primed into his IV bag instead of directly flowing throught the port so it got diluted and the CT Scan didn't come out clearly.

We saw doctor Pfister this morning and he said that they wanted to wait on giving Michael the chemo today and tomorrow as originally planned to rule out the possibility of his having a PE. Also, his white blood cell count was low and the doctor wants to check and see if it goes up or down before recycling his treatment. So, tentatively, we have it scheduled to resume on Thurs & Fri. If, depending on the results of the cell count and CT scans, they may choose to change the chemo therapy to a different type.

The alternative drug he mentioned takes 4 days to adminsiter but the side effects are SLIGHTLY less toxic. They are also concerned about the hearing loss. Since he has had a noticeable loss already (a side effect of the Cisplatinum) that might be another reason to change chemo drugs. If the current chemo was to continue, there would be a greater chance of more hearing loss. The only down side is the alternative chemotherapy, is shown in a few studies, to not be quite as effective in treating Michael's type of cancer.

I'll keep you all posted on events.