Hi folks -- I've spent the last couple of days scanning message boards for discussions related to my own diagnosis/treatment, which is tongue cancer, and I've gotten the best information from this one. So thanks for being here, and I hope you indulge me.

For the last 2 months since my diagnosis (initially thought to be upper denture irritation, which I've had before), I've gone through the expected biopsy, blood work, CT scan/PT scan, consultations with 3 oncologists regarding what to expect from a combo of radiation/chemo, plus having the PEG tube inserted in a couple of weeks.

During that pre-treatment time, the pain meds didn't agree with me (reacted to Vicodin and Oxy like they were the devil's poison and some did absolutely nothing), and I constantly had that sticky saliva which was just as compromising to daily life as the pain. Finally, the combination of MethylPREDNIsOLONE (steroid), 4 mg X 2, and Tramadol-Acetaminophen/37.5-325 also twice a day, has all but eliminated the pain and all dry mouth, aka sticky saliva...which I always found paradoxical...is gone.

So my dilemma is what if this thing is indeed under control? Is it a miracle or just one of those freak remissions? Why would I submit to torture (I know, I know, I should just deal with it) if perchance I don't have to? At least not at my age, which next Tuesday will be my 70th birthday. I don't want to feel miserable for an entire precious year when I have fewer of those left anyway.

I do see the oncologist team on Wednesday 7.13.11, and I intend to ask what the consequences might be (already anticipating the answer), but I'm seriously hoping they will tell me to give it more time, and if my situation does get worse, then I'll be able to proceed with Plan A at that time.

Any thoughts?

Hi,
Sorry you are having problems. First, I am wondering where you are having your treatment--are you going to a cancer center that sees lots of oral cancer, are your oncologists well acquainted with it? One place you can go is on this website for a list. I know you can find this list if you do a search on the internet as well, and others on this board usually have that link handy. This is our link, or you can easily search the oral cancer foundation site for NIH cancer centers. http://oralcancerfoundation.org/resources/index.htm#other

However if you have 3 oncologists in on your case and they tell you that you should have radiation/chemo, more than likely that is your ticket to survival. As to why you are thinking it is under control when all you have had is a biopsy, I could not tell from your post.

How large is/was your lesion, where was it located (is it base of tongue, rather than in the mouth), do you have lymph node involvement--all those are questions that factor into this question of treatment. If you are questioning your treatment plan, by all means seek a second opinion, and make it from one of the NIH designated ones if at all possible. Then you have made that second opinion really a valuable one.

Is it worth it? Well I think so. Sure, it is not a picnic. There have been folks older than 70 who have made it through treatment. You must be a "young" 70 year old or you would not be exploring the internet. One of the things I was told was to take one day at a time when it comes to treatment, get through that day. That was great advice for me. You may find you can get through it way better than you thought. Now, for me, after I got the aforementioned advice and "got myself together", I decided I was going to get through it and do well, did not know how that was going to occur, but it worked that way.

I'm a slightly built gal, who was a music teacher for goodness sake, not an athlete, and I think a lot of people who saw me thought I would not be able to maintain weight, especially without a feeding tube, but I did. If I had to use one, fine too, I was just going to keep my nutrition up. Plus I tried to get some exercise mostly in the form of walking every day.

Don't count yourself out before you even get to the main event!
Best,
Anne

I totally agree - if they. Are giving radiation and chemo it sounds like Base of tongue cancer... Regardless though radiation is no picnic.... But it's 30-35 days of your life - chemo is done with it. A few months to recover (I'm at week 8 and feeling good) and you should find your new normal. the say it take one month of recovery fir every week of rads. You sound healthy and strong - please treat it waiting will only make the situation worse... Hugs and take care!

Thanks girls.

In response to Annie's questions ~~
I've been seeing the oncologists at the Foley Cancer Center affiliated with Rutland Regional Medical Center in Vermont, but I don't see them listed in the NIH index. (I didn't mean to imply that I had 3 individual opinions. These doctors have been involved in pre-treatment diagnosis and testing and have formulated the plan for treatment, as a group.)

The tumor is about the size of a nickel at the base (left side, toward the back, if that's what "base" means), and there is no lymph node involvement. I had a slight swelling of the left lymph node on my first examination by an ENT, who did a needle biopsy and that came out clean for cancer, so the assumption (confirmed by CT scan) was that the swelling was not primarily lymphatic which in turn caused the tongue tumor, but the other way around, and the lymph node's swelling resulted from bacteria buildup because of its proximity to the tongue tumor. And, by the way, in addition to going on Day 3 now of no pain, that swelling (which was minor in the first place) has now disappeared too.

As for being a "young 70" because I use the Internet for research, well, what can I say!! I've been using computers since they took up an entire room of their own and have watched and participated as IT progressed at light speed since the 1960's. Ironically, even after I retired, I taught classes on a volunteer basis to train "seniors" in computer/Internet basics.

In response to Cheryl's comments ~~
"it take one month of recovery fir every week of rads," that's what bothers me the most. Because using that formula, I'm scheduled for 8 weeks, so that's 8 months just for treatment alone. And from reading hundreds of comments, people who undergo that length and amount of radiation in the mouth do not regain their taste until much later, often not at all.

I've also considered my current health problems, COPD, which is well maintained by Spiriva, but which apparently caused some blips in the EKG I had which was a pre-surgical procedure for putting in the PEG. I have not met nor spoken with that surgeon regarding that, but my guess is that the combination of COPD and stress would make me a poor candidate for anesthesia.

I understand that everyone is different, and each person reacts differently to treatment, but I must also consider my personal quality of life, which means if I can remain relatively pain free by at least putting off treatment that guarantees I'll feel even worse for at least six months, as well as possibly not ever regaining the pleasures of eating, then this is the route I will take. If it becomes worse, spreads, or becomes unbearable, then of course I will rethink everything. And at least I will have all the knowledge I need.

Even the American Cancer Society advises to "Know Your Options: [At first diagnosis] Don't try to decide which choice is best at this point--just identify as many options as you can, even if some seem far-fetched.../different doctors might recommend different chemotherapy combinations at different intervals or different combinations of chemotherapy, surgery and radiation. Then again, the best treatment may be no treatment at all. Patients diagnosed with slow-growing cancers are often given the option of 'watchful waiting' if there are no serious symptoms."

Since I've gone several days now with "no serious symptoms" reappearing or becoming worse, call me a procrastinator, but I've also never been known to jump right into strange bodies of water before I've tested it for what may lie beneath!

I do plan to leave a voice mail for the primary oncologist tomorrow, relating my feelings on this, and ask him to call me when he has a few moments to discuss it. So stay tuned. And thanks much for your input!

Maybe your symptoms are gone but the cancer is there. The side effects aren't so bad to go through in order to be healthy and cancer free again. Having this spread and get out of control will be REALLY uncomfortable. It isn't pleasant. Take care of business while you can.

Tongue cancer isn't slow growing as far as I know. I don't know the speicifcs of your biopsy but I would not mess around with this.
You have the option to erradicate this from your body and live a healthy rest of your life. I understand your reservations but having this spread or get worse lessens your chance of survival. It will be 1000x more uncomfortable than any treatments you have to go through. You should read through some of the posts here from patients who have had this cancer spread. Sorry to be harsh but I think you need to be a lot more aware of the gravity of the situation.

This is cancer you are dealing with- it isn't something to be reasoned with.

Please consider getting a second opinion. I do not know about the extent of your COPD. You might not get your wish about remaining relatively pain free for 6 months. You have not put cancer behind you. Would that could have happened to me, and my lesion was smaller than yours.

Did they mention anything about HPV?

I don't know where you are in relation to an NIH cancer center but that would really be the best shot. These folks see lots of people with your cancer, and some of them have other health issues. They would be able to best speak to your problems. I wouldn't put it just like that to your oncologist when you speak to him/her on the phone, but it is the truth.

I don't know how long you can live with this particular cancer without having unpleasant effects from cancer if that is what you are talking about. It could be someone else has a guess, but that is all it would be. Perhaps what you are talking about is whether or not it is slow growing enough that you can get two or three good years before it gets to the point that you must have palliative care. At least that is what I think of when you say, "wait until it becomes unbearable", then you will rethink it. I am not sure there will be much rethinking to do at that point. This is not a "watchful waiting" type of cancer.

Again, a cancer center/hospital that sees hundreds, perhaps thousands of cases each year would be better equipped to tell you what your options are.

Anne

Oral cancer is a fast moving cancer and can not be cured with watchful waiting. Of course the decision will be a difficult one to make but it is your choice of how to handle this disease. Its wisest to go to a large cancer center where they are familiar with treating many head and neck cancer patients. A whole team will work together to cure you.

One thing that you need to understand EVERYONE IS DIFFERENT. I cant say this enough. Some struggle while others sail right thru easily. I had a pretty rough time but I was well enough to return to work just 6 weeks after finishing my treatments. I was not 100%, but I was feeling pretty good. Thats just me, who knows what your story would be. Everyone reacts in their own individual way to medications and treatments.

One very important thing to consider....if you dont try to fight this, you will not have a chance. By the time you change your mind and want to get treated, it could be too late. Please think long and hard about this.

Wishing you all the best!!!!

It sounds to me like the location is the oral tongue - likely not HPV related. Is it inside your mouth? If so usually surgery is the first option of this kind cancer. Please get a second opinion. And take care.

Morgan

Good for you to question what to to do. IMO, if you do have a oral cancer tumor you leave untreated, you will die in a very unpleasant manner. Christine spelled it out: watchful waiting is never an option for tongue cancer. I'm a firm believer in watchful waiting for prostate cancer and a 75 year friend who does have prostate cancer has found it works great for him these last 5 years. But trust me, if you wait until it gets worse, your quality of life after TX will be much worse. It's hard to tell from your post without more info but it sounds like you could be a Stage I or II, which means you can be cured and still have taste, eat etc. If you wait until you are stage IV, you risk ending up like me, losing all ability to eat or drink, speak with an impairment, constant pain and a lifetime feeding tube. BTW, my life is still worth living and I have more fun than most people, but since your post implies that you are willing to risk dying than live like this, not getting TX now when the tumor is small and hasn't spread is pretty much a guarantee that you will undergo much more "torture" later than now.

Please ask your doctors to tell you the precise medical staging. It should be what Stage ( I thru IV), Tumor size (T1-T4), Node involvement (N #)and if it has spread (M)
We use that in our signature. You can see I was Stage IV, with a size T3 tumor and 2 Lymph nodes with cancer that had not spread (IV,T3,N2).

Foley Cancer Center (formerly Community Cancer Center) may have had the same initials as a CCC but at OCF we mean the official Comprehensive Cancer Center. As you have already found out, there are zero CCC in Vermont. The NIH website indicates he nearest NCI-designated Cancer Centers are in New Hampshire, New York, and Massachusetts. But lots of OCF posters get regional treatment from non CCC and do very well.
Your post give no indication of a remission, miracle or otherwise. Not having pain and sticky saliva is no indication of whether your cancer tumor is growing.

Last but not least, I understand your concerns. After my cancer came back, I wanted my ENT to [quote]tell me to give it more time, and if my situation does get worse, then I'll be able to proceed with Plan A at that time. [/quote] Her reply was that I would be very foolish to make that decision and when I pushed back, she graphically described how an oral cancer patient dies when they let the tumor grow: they either suffocate or else die when the tumor bursts through their face and neck or else spreads to the lungs. She had stubborn patients who did make that choice and she did say she could keep me doped up enough that I would not have any pain.
Like Eric S on this board though, I have promises to keep and miles to go before I sleep

Keep the faith
Charm

Morgan, I know you're scared. But I must agree with everyone. I personally don't believe in miracles. Which is not to say that great and wonderful things don't happen now and then. As Christine says, we're all different.

If I were you I'd read over Charm's post again. He pretty much nails it every time, as he has here.

We're all in your corner!

Morgan44,

[quote=morgan44]The tumor is about the size of a nickel at the base (left side, toward the back...), and there is no lymph node involvement. I had a slight swelling of the left lymph node ..., that swelling (which was minor in the first place) has now disappeared... [/quote]
"Watchful Waiting", as a strategy for dealing with oral cancer, is based on the hopeful assumption that you are "CANCER-FREE".

YOU ARE NOT "CANCER-FREE"!

"The tumor is about the size of a nickel...(left side, toward the back...)." This tumor must be treated or you will indeed die a horrible death! This is not a small tumor! It will not disappear or go away! Surgery, Radiation and/or Chemotherapy ARE in your future... the sooner you get with it the better.

If you do have a "death wish", please find a more pleasant way to die!

__________________________________________________

So you are "PAIN-FREE"! Wonderful! [quote=morgan44]Finally, the combination of MethylPREDNIsOLONE (steroid), 4 mg X 2, and Tramadol-Acetaminophen/37.5-325 also twice a day, has all but eliminated the pain... [/quote]Did you stop to think the pain meds are doing this and the tumor is still there? PAIN tells us that something is not right with the body. Wouldn't it hurt if you stop the pain medications?

__________________________________________________

Click the following link to read page 3 of a thread started by wife and caregiver("JulieKay") about her husband Rich, who DIED FROM UNTREATED ORAL CANCER.

Richs Plea

Rich did not stop smoking and was not healthy enough to survive treatment. Scroll down this topic until you find a post from "debandbill" (Sat Jan 03 2009) that gives you a clickable link to Rich's Website.

This is is what death from OC looks like.

Note to forum readers: This is a graphic website, so don't go there if you don't really want to know. This is why I did not post the actual "shortcut" to the website.

__________________________________________________

[quote=morgan44]Since I've gone several days now with "no serious symptoms" reappearing or becoming worse, call me a procrastinator, but I've also never been known to jump right into strange bodies of water before I've tested it for what may lie beneath!
[/quote]
IF YOU WANT TO LIVE, you are going to have to make this swim. It won't be easy, and you will be swimming for your LIFE!

I know this sound harsh. We all are scared by this nasty cancer! It is terrible beyond belief. But you have choices to make. Keep in mind when you weigh your options that this is indeed a LIFE OR DEATH decision!

"Wondering if it's worth it?"

Your Call!

The wonderful folks on these forums will be here to support you no matter what you do. This is your new OCF FAMILY!

PS: I think 70 is young!

Thanks for everyone's support. I fully realize I'm at that stage of denial, and that attitude probably stems from the fact that I've dodged the bullet (figuratively) a few times before, unrelated to cancer, so I'm convinced I can dodge this one too. I've never been afraid of dying, just not in pain.

So I'll go to the first radiation treatment on Wednesday, and take it from there.

Morgan, being in denial is one thing but being unwilling to see the whole picture is something else. We write all these terrible things not to be hurtful or challenge your ideas, but to make you understand what WILL happen without treatment.

Im glad you know what needs to be done and accept this. I know you dont want to do this. I felt the same exact way all 3 times Ive been thru it. But I had people depending on me. My children would have been left alone without anyone. I had to at least try to survive for them, I didnt do this for me. Im sure you have people who love you and need you to be here. If you dont want to do it for yourself, think of those you are close with.

Catherine is right, we are here for you and will help you as much as possible. We will encourage you when you want to quit and we will perk you up when you are down. OCF members are here to help however we are able to.

Best wishes!!!!!

Morgan,

If I were in your shoes I would go to a NIH Cancer Center. You can take all your records with you and the disks, they'll want to read the disks and will go from there. You can call yourself and make an appointment no need for a Doctor to refer you.

My late husband had Stage 4 Throat Cancer, 12 years ago. We didn't know anything about NIH Cancer Centers an ENT Surgeon and a Radiation Oncologist treated him, 18 months later he passed. It was the worse thing in my life to witness, I think to this day if we had known about Cancer Centers we would have been there in a flash.

The Cancer Centers have the lastest equipment and their speciality is only CANCER....I drive 2 1/2 hours every 6 months for my checkups, I wouldn't go any place else.

I understand you're in denial I was too. I thought this can't be happening first my husband then me. I would look at the lesion daily one day it was painful and red, the next day it looked like it was shrinking and little pain then it started to spread and quickly.

Listen to the people on the forum they know what they're talking about. Don't hesitate, step on it!!!!

Take care,
Connie

Happy 70th Birthday, Morgan!

[quote=morgan44]next Tuesday will be my 70th birthday.[/quote] This is Tuesday, right?

[quote=morgan44]I do see the oncologist team on Wednesday 7.13.11, and I intend to ask what the consequences might be... [/quote]
Do you have someone to go with you when you talk with your team on Wed.? You will have a lot of info thrown at you at this meeting. It would really help to have an extra pair of ears, plus the added bonus of someone who can take notes for you. It is easy to be overwhelmed with the onslaught of new information.

After you have a better concept of the treatment plan proposed by your team at the "Foley Cancer Center", I STRONGLY suggest that you get a SECOND OPINION at a Comprehensive Cancer Center, as others here have already recommended. A second opinion might result in a "surgical only" solution, which does happen in Stage 1 or 2 tumors (no node involvement). I think most folks here would agree that this would be a preferable "Quality of Life" treatment option, if recommended as a viable plan by a top-notch team at a CCC.

If you get a second opinion at a CCC that is not near where you live, this doesn't necessarily mean you can't still be treated at you local cancer center. Often the CCC doctors can consult with your local cancer center and set up a precise treatment plan tailored for YOU.

It is important that Oral Cancer not be ignored. It is also important to be informed of your treatment options. I think most of us here feel a second opinion is worth time and effort.

Let us know how things go on Wed.! Remember, we are all here for you!

Happy Birthday to you, etc, and many more!

I think virtually all of us went through some denial. It's hard. But that does not mean you cannot see this through the right way and have a life worth living afterwards.

I hate to throw more at you. You said in one place about meeting with your oncology team and another about starting radiation treatment on Wednesday (tomorrow?) Anyway, I second Catherine's idea about getting the second opinion, which I realize I have already said twice in previous posts. But,then you can compare protocol. And you may be able to use that protocol where you are in Vermont. It's a good thought. I guess what confuses me about your diagnosis/plan is that oral tongue cancer usually is more successfully treated with surgery first; it differs from cancer in the throat/tonsil area, which on this forum anyway, is often HPV related. Unless your cancer is in a place in your mouth that surgery would be really destructive to your tongue . . . If they can't do surgery they will do heavier radiation treatments/chemo. And that might be where you are. I don't know all about it, just have read a bunch in my spare time.

If you have someone to go with you to the meeting that would be great, as was suggested in C's post. And getting an appointment at a larger cancer center is not as difficult as what you might think, just get your records sent, jump though a few hoops, you are internet/computer savy, as has been established!

But, bottom line, I am so glad that you decided to fight what you have.

Best,
Anne

Hi folks -- thought I'd give ya'll a brief update. First, the closest comprehensive cancer care facility listed is Dartmouth-Hitchcock (Norris Cancer Care), in Lebanon NH, and I spent a couple of hours scanning their site gathering information that I could compare to Rutland VT's Foley Cancer Center where I'm presently being treated. Turns out Rutland also has all the same state-of-the-art equipment, and their treatment program for me seems like it would mirror what I would receive at D-H. I'm very pleased with the team effort and dedication there, and they all make every effort to accommodate all the physical and emotional trauma I have experienced (and probably will in the future).

Yesterday, I had the second "fitting" or measurements for the mask, and today a summary consult with the chief oncologist. He believes the best chemo drug for my particular condition would be Erbitux (cetuximab) which has the least clinical side effects (i.e., no common nausea, fatigue; that the worst side effect is apt to be a rash. So I agreed to have that once a week during the 5-day schedule. First all radiation is on Monday the 18th, with the combo on Tuesday.

HOWEVER, I looked up Erbitux online, and it sure doesn't look as user-friendly (for lack of a better definition) as he described. I realize the clinical trials for side effects listed on the web are small percentages, but I'm constantly reminded of the frightening side effects I had from Vicodin. So here I go getting all scared again. At least since I'll be right at the hospital every day, though, I'll be closely monitored for any unacceptable side effects.

At the risk of seeming like all I do is complain, now the only thing that had me worried is the uncomfortable position I have to lie in for 20+ minutes during the radiation. You see I also have osteoporosis, mild, but still hugely uncomfortable to lie flat on my back on that hard-as-a-rock platform. I've got through it twice, with the facial recognition, but both times paid the price the rest of the day with extremely sore muscles in my neck and shoulders from simply fighting to stay completely still in an awfully painful position.

BUT THERE'S GOOD NEWS!! I now have a neck brace, which I put on whenever I can feel those muscles start to tighten and know that pain will follow. It seems to solve that problem, and I'm confident it will help following each day's radiation treatment. Who knew a $12.00 OTC item would solve at least one of the side effects of this ugly disease which will undoubtedly cost in the thousands!

I'd be interested if anyone has had experience with Erbitux.

Hi Morgan,

Glad you are moving forward.

I think one of the reasons folks here keep advising you to get a second opinion, is because you have not said why you are not having surgery as a first treatment option. Please explain why you AREN'T a candidate for surgery.

[quote=AnneO]I guess what confuses me about your diagnosis/plan is that oral tongue cancer usually is more successfully treated with surgery first; it differs from cancer in the throat/tonsil area... Unless your cancer is in a place in your mouth that surgery would be really destructive to your tongue...
If they can't do surgery they will do heavier radiation treatments/chemo.[/quote]
Distance to a CCC should not be a factor in getting a second opinion. A CCC might recommend surgery first!

Maybe you won't need Rad/Chemo treatment (I THINK you said there were no cancerous lymph nodes).

IF you can safely avoid radiation, you will have a better QOL following treatment.

BUT, you will NEVER KNOW if you don't consult an EXPERT in the field. I got a second opinion at Johns Hopkins in Baltimore (3-4 hour drive away), seeing one of the top ENTs in the country.

Getting a second opinion at a CCC does NOT mean you have to be treated there. It is simply a way for YOU to be in CONTROL of your life, and verify that you are comfortable with your decisions.

Memorial Sloan-Kettering Cancer Center in New York City, is the second-ranked CCC for OC in the COUNTRY.

Read this post from Leslie B to another new OCF family member:

[quote=Leslie B]As others have done, I would recommend a second opinion from a top-ranked cancer center...

Whether you choose to be treated locally... or at a center like [Memorial Sloan-Kettering] listed above, it's important to at least get a second opinion from a facility that sees a LOT of this kind of cancer. Assuming the second institution agrees in the diagnosis, that second opinion may concur with what you are hearing from the local docs, or you may receive a different treatment plan. (Davidcpa, for instance, got five opinions -- and five different plans -- before choosing the one from a top-ranked cancer center.) Because this cancer can impact so many functions (speaking, eating, breathing, and so on), you want to make sure to get advice from people who have treated this many, many times.

I'm reminded of a post from early last year by a then-new caregiver whose husband had been diagnosed with cancer by an ENT in New York City. She received much encouragement to get her husband a second opinion from Memorial Sloan-Kettering and wrote this after making an appointment there:

"The ENT guy said his practice (three guys) sees about one case of oral cancer a year.
[color:#FF0000]Sloan sees 3500 [per year]. A bit of a difference. The strong message you guys sent me about where people should go is so important. I hope the word is out there."[/color][/quote]
Check it out. If you can make a ONE-TIME TRIP there for consultation, I feel it would be time well spent. I think Medicare will cover second opinions.

Your present doctors at "Rutland VT's Foley Cancer Center" should be PLEASED that you want a second opinion, and offer any assistance you need in arranging a consult at a CCC. If they are confident in their treatment plan for you, they will welcome verification from another center. If they are hesitant or NOT HELPFUL, then this is a sure sign that you should RUN AWAY to another facility!

Everybody here is on your side. PLEASE take advantage of the collective knowledge this family has to offer! Keep posting!

My best to you!

Morgan,

I'm confused is the cancer on your tongue or throat?

My cancer was on my tongue I had surgery, no rad/chemo, lymphnodes not involved.

If your cancer is on your tongue why are you having radiation instead of surgery?

I was sent to a Radiation Oncologist first he told me no way would he do radiation on the tongue, first surgery then radiation if needed.

It would help if you had a signature line.

Connie

Hi Morgan,

It's great that the neck brace is so helpful for you. I'm so glad that it gives you some relief.

There are lots of people here who have experience with Erbitux. Hopefully they will chime in with some information for you. I have only had one dose so far and it was just two days ago, so I am far from an expert, but I'll tell you my experience so far. I had some nausea and vomiting the night of the infusion and had a very severe headache. The next day the nausea was gone, but the headache was still pretty bad. I am now on the second day after infusion and I feel just fine. I'm not sure my experience was typical though. My doctor said it does not cause nausea for most people.

I've been told that surgery could involve removal of a third of my tongue, and I should be prepared to need speech therapy among other possible repercussions that, frankly, are worse options than radiation/chemo.

I really don't wish to go into all my personal medical history that would preclude surgery, but suffice it to say that I already have a heart condition and even the minor surgery to put a PEG in is going to be avoided if possible.

I realize this is a tight group of people who are like-minded, but I will proceed as I see fit, in coordination with my own team of doctors, whom I believe are all well-schooled and with the proper medical options and protocols designed for my particular situation.

As you all (and my docs) continue to tell me, "everyone is different," and this is most certainly true in my situation. I don't have the means to travel great distances for treatment, such as Baltimore or NYC, although had Dartmouth offered the same treatment I will be receiving in Vermont, I would have considered daily commute over to New Hampshire. But Dartmouth confirmed that the oncologists in Rutland who are treating me as as good as their own teams, and that's enough for me.

Morgan,

Thank you for explaining why you are not a candidate for surgery. We are not trying to be nosey, we just want what is best for you.

I am glad you are happy with your treatment plan and team. Confidence in them is very important.

Many people here have gone through the treatment you are facing, and can help you through it with good advice. All you have to do is ask.

My best to you!

Please understand that everyone here is on your side. I wouldn't say we are all like-minded. Stick around and you'll see a number of differences. It's just that everyone knows proper diagnosis and plan is the first step to success. You had us all worried from the get go wondering if it was worth it. Yes, there are oral cancer survivors who have done ok at community cancer centers.

I saw that you were having more days of radiation than the days of radiation that I had with surgery, so although I wondered about why no surgery, I figured that was the "make-up" for not having it.

You surely aren't having radiation for 20+ minutes at a time, though. It probably seems that way with the rehearsal, but I always counted the music they played and estimated where we were in the treatment. You'll get very good at knowing how much longer you have during those sessions.

I wish you a smooth week next week, or as smooth as it can be considering. Please ask for help from your radiation team or bounce it off this forum if you need it, or you just need some support.

Best,
Anne

Morgan,

Ditto to what Anne and Catherine wrote.

Yes, is it worth it scared me I'm glad you're getting treatment and it goes smoothly for you.

Best Wishes,
Connie

Hi, Morgan
my husband recently completed radiation therapy + cetuximab. He did get the rash, but it was managable with the right topicals (Eucerine Aquaphor worked for him) and the oral antibiotic Minocycline. You have to stay on top of it, though, and religiously to your skin care regimen.

The heuristic about one week of recovery for each week on the table seems to be subject to some variation. The end of radiation and the week or so thereafter was pretty wretched for my husband, but then the improvement began. He cut back to a single vicodin at night so he could safely drive to work HIMSELF a couple of weeks after the radiation was complete. He is stubborn. In terms of physical stamina, he still has a ways to go - but its coming.

WOW, such great answers you have gotten Morgan. These are people that know and understand. They are been there and done that people. As for your age, I am 75 1/2 and want all the time I can fight for. I consider us as young pups yet and I want to be an old DOG.

[quote=morgan44]I've been told that surgery could involve removal of a third of my tongue, and I should be prepared to need speech therapy among other possible repercussions that, frankly, are worse options than radiation/chemo. [/quote]

My dad had a left partial glossectomy (about half of tongue removed, remaining folded to construct) along with SND followed by Chemo-Radiation. For him surgery was much easier than radiation/chemo.

It took a whole year to recover from Radiation and now he has to undergo treatment again for recurrent disease.

Trust your doctor and let them do what they feel is right for you. Sharing your experience helps other to plan or probably ask their doctors.

Morgan

Again, good for you on pushing back politely on some of these comments. IMO, You are fine being treated where you are. the Foley Center plan for you sounds exactly like the plan that my CCC, the Lombardi Cancer Center in Georgetown, had for me for a BOT tumor. (Radiation & Erbitux) I would have been worried if they had suggested surgery instead of radiation. Base of tongue cancer is not treated the same as other oral cancers or even lateral tongue cancers. Surgery is an option of last resort, to be avoided whenever possible. My understanding is that the majority of oncologists would not recommend surgery for even small tumors at the base of the tongue due to the potential complications.
My ENT surgeon was adamant on this point when she handed me over to the CCC RO and MO.

Two quick items: Erbitux is like that nursery rhyme: when it is good, it is very very good, when it is bad, it is horrid.
My only regret with my CCC plan was that I did not insist on getting carboplatin along with the Erbitux. For a minority of patients, Erbitux simply does not work. They have developed a test to weed out patients with colon cancer for whom it is worthless, but it's luck of the draw for us head and neck cancer patients. It could not hurt to discuss this with your doctors. I was told the same rosy story as you so I am a skeptic about Erbitux now. My doctors were upfront the second time around that there was no point in giving me any more Erbitux so they switched to carboplatin

As far as avoiding the PEG, it's difficult but can be done. I went thru all 40 radiation and 8 Erbitux with no feeding tube. I did end up living on liquids like Ensure Plus the last three weeks but I never got dehydrated nor needed any medical attention from not having a PEG. I was swallowing normally very shortly after radiation.

The American Cancer Society advice is generic and as I first posted, waiting and watching is actually good advice for prostate cancer - it's so slow growing and I've just seen another major study that no man over 65 should bother with surgery for prostate cancer but just do cyberknife . There are no such studies for base of tongue cancer - the longer you wait, the worse it gets.

Last but not least, have you asked about getting specific pain medication or muscle relaxants to take for the radiation table - I was pretty doped up each time on the stuff my radiologist prescribed and he said it would have no effect on the radiation's efficacy

You can always get surgery if worse comes to worse but lots of posters here did just fine with radiation and chemo only
Keep the Faith
Charm

Morgan,
I agree, after reading your last post I am glad you are doing what you are doing. Applause to Charm for his comments.
Best,
Anne

Thanks to everyone for recent comments. HAPPY FRIDAY! The last day of my first week of treatment, and so far I'm doing fine. Again, the radiation was a struggle the first 'round' because my back was killing me (I think I mentioned this). But we finally found a comfortable position, and now I just wait out the 15-20 minutes until all the whirring stops. Then I'm done, in and out in a half-hour. I'm slightly more tired by mid afternoon, with a headache which is sometimes fierce, but I've found the best solution for that is just a cold pack alternating with my neck brace.

I do know that the entire treatment schedule isn't apt to be as smooth sailing as this first week, but I'm a determined young(!) woman who has always compromised with myselfafter mentally analyzing all the pros and cons to find the best approach to any of the more distasteful events in my life. My mantra has always been "I can stand anything, as long as I know it's temporary." Works every time, once I make a decision.

So keeping that in mind, I'm determined to avoid the PEG as long as possible; so far I have only slight burning in my throat and seem to manage eating creamed soups using whole milk and a dollop of butter with crackers, spinach quiche, and other soft foods verrrrrry carefully, with the assist of the ol' Magic Mouthwash about a half-hour before so my throat isn't completely numb but just relaxed. I also do jaw exercises which help prevent throat muscles from getting stiff. Also drink at least two Carnation Instant Breakfast a day, iced tea and ginger ale. My "menus" have become an adventure!

The Erbitux worked well, no side effects at all, and yes I'm using the recommended soaps and lotions to hopefully avoid a rash. I have six more of those treatments, once per week, and have finally found time to catch up on crossword puzzles which used to be a hobby until the Internet came along.

So far, so good. But don't be surprised if you don't see me back in a week or so kicking and screaming!

My best to all of you. And thanks for your help.

Maggie

Glad you are doing so well... Keep on Trucking!!!

Maggie, sounds like you are doing fantastic! Im so happy that you have decided to go thru with being treated for OC. Its a long road but you are not on it alone. We will help you when you need info and support. Keep up eating as much as you can and drink lots of water. Here is a list of easy to eat foods that might be helpful to you.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Maggie,
Thank you! You have given me a needed lift. It most definitely will be worth it to you and anyone who follows your story.

You're like me in that I decided I was going to try to avoid using a PEG. Again, not against it, the thought of it just made me sick, I can be kinda squeamish. So at the end it was taking me well over an hour to eat food, but by then there was no point in getting a PEG. That's when those liquid supplements become invaluable.

Again, thanks, and TGIF.
Anne

Morgan...So glad to hear from you and you're doing well. Reading your post put a smile on my face, Yes It's Worth It....Keep up the good work and keep us posted.

Best Wishes,
Connie

[quote=ChristineB]Maggie, sounds like you are doing fantastic! Im so happy that you have decided to go thru with being treated for OC. Its a long road but you are not on it alone. We will help you when you need info and support. Keep up eating as much as you can and drink lots of water. Here is a list of easy to eat foods that might be helpful to you.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621 [/quote]

Thanks so much for the list! Many of the items listed are those that I regularly eat, but I'm always looking for hints to diversify a rather bland diet. I often just wing it with cream soups. Bought a fresh cauliflower the other day, cooked it to death with potatoes in half-chicken broth/half water, mashed it all together, then added whole milk and enough shredded cheddar to thicken. It was absolutely yummy, and will even make that when this ordeal is over for dinner guests! Today I'm going to do the same thing, but with squash.

As ya'll can see, I haven't yet lost my appetite.

[quote=AnneO]Maggie,
Thank you! You have given me a needed lift. It most definitely will be worth it to you and anyone who follows your story.

You're like me in that I decided I was going to try to avoid using a PEG. Again, not against it, the thought of it just made me sick, I can be kinda squeamish. So at the end it was taking me well over an hour to eat food, but by then there was no point in getting a PEG. That's when those liquid supplements become invaluable.

Again, thanks, and TGIF.
Anne [/quote]

I think my aversion to the PEG is that I don't want to become reliant on it. My eating habits are such that if I skip meals (dieting, back in the day, for instance), I start feeling queasy, and if I know in my head that "something else" is feeding me, I'll feel even more nauseous. That, and the fact that I believe any invasive surgery, no matter how minor, is risky if there are alternatives. My oncs are fine with that, and my weight and other labs taken once a week to monitor.

[quote=ConnieFL]Morgan...So glad to hear from you and you're doing well. Reading your post put a smile on my face, Yes It's Worth It....Keep up the good work and keep us posted.

Best Wishes,
Connie [/quote]

Thanks. Now if it would just cool off. I'm so glad God invented air conditioners, but He/She needs to put a bug in Mother Earth's ear that enough is enough.

I had the first infusion of Erbitux last Wednesday, and had no complications at all. (Posted more in your forum.)However, this weekend, I suffered with severe headaches, which will be discussed this afternoon. That was following the first full week of radiation and the Erbitux, so it's possible the latter is what caused it. I'm used to the mouth pain but not these debilitating headaches. Stay tuned, folks.

Waiting for the next installment. Hoping your team came up with something to combat the headaches.

Yes, the doc said the headaches might have been a fluke (transfer pain), but if they continued each weekend following 5 full days, they may scale back to 4 days and add those days at the end as one option, or find another Rx that would deal only with headache pain but wouldn't interfere with the other meds. He also said if headaches keep me awake at night, it's more important to get sound sleep, so it was okay to take Tylenol extra strength with the sleep ingredient (starts with a "D" but can't spell it). I haven't had to use any yet.

I'm wondering if I should keep MY comments in this topic, since I'm really past the "wondering if it's worth it" phase (lol). It's fine with me if you want to move it to a more appropriate topic (if you have that capability).

Headaches can be incapacitating. No need to live with the pain. Pursue a solution until you find one that works. Don't worry about all the potential causes, because worrying is unproductive. Try taking the time during your day to relax your mind....put yourself first. No one will take care of you, like you can!

I agree with Eva about the severness of headaches. I get migraines a lot plus the ones I have 24/7 from the ENT putting a hole in my eardrum. I won't complain too much tho because I am alive to feel the pain which is a big plus. These things just laugh at Percocet and Methadone. Added to the tongue, throat, jaw bone and it becomes a part of daily life. Just gotta keep fighting and being stubborn and you are OK. Good luck Morgan and keep up the fight.

There are many roads to try:
Switch pain meds - Aleve, Advil...
Spend 5 minutes in complete quiet and relax your brain, will the pain away.
Take deep breaths throughout the day
Listen to soothing music
Ask a friend/spouse to rub your temples and your shoulders to release stress
Get a massage
Treat yourself to something you love

Let me know what you try....and we can brainstorm some more...there IS a solution out there for you! Believe that.

I find if I have headache pain (very rare but painful when it does happen) I lay down put a cool compress on and that helps me drift off - after a bug Tylenol or advil though! Good luck... And mre power to you for making your way through treatment!

I haven't had another bout of severe headaches, but I'm now feeling the onslaught of the burning all through my mouth. My lips have taken the biggest hit, with severe dryness leading to cracking and today, my bottom lip is so ripped up it looks like it could bleed at any moment. I have an arsenal of moisturizers that are in constant use. There's one area on my bottom lip and gum directly inside that same area that really looks like it's become more irritated than other areas because of that damned styrofoam bite thingie that is ragged on that edge and presses against that area tightly while I'm under the Big Guy. I'm going to ask tomorrow if they could please file that thing down. (As the adage goes, they can send a man to the moon but... in this case, no one has come up with a more comfortable means of holding a patient's mouth steady and in place? Good grief, even horses have mouth bits that are designed to be comfortable!

Well that's my rant du jour. Always something. This certainly is a lifestyle change.

Still hanging in,
Maggie

Wow they used to take a piece of gauze wrap it in Saran wrap and put it between my teeth and my lips to push them out of the line of fire... Maybe they can do the Same for you? Good luck!

Not much for me to say except, enjoy each and every day you are alive and remember, life is worth fighting for. A body is a lot tougher than one might think and can heal given the opportunities.

I don't know if they'll go along with any deviation from protocol, including the "tools" they use. But I'll tell ya, something has to be done about my burned lips. Today I woke up with a blister on my lower lip on the opposite side from where the radiation is supposed to be targeted the most. I have to keep my lips constantly sticky with my arsenal of moisturizers, the most effective of which is the Bag Balm but it feels like I'm wearing an extra pair of lips.

I also developed what I think might be thrush, but of course being the weekend won't get to have anyone look in my mouth until Monday. So the recommendation over the phone was to use the mixture of salt/baking soda mouthwash until then. OMG! The salt was TORTURE on my poor burned lips (outside and inside). I'm now using just baking soda, and it seems to help. What were they THINKING?!

Hey there -are your lips completely clean of any type of moisturizer during radiation? I had skin trouble on my chin and lips and kept moistuizer on during radiation treatments and made things so much worse - didn't even think about my chin being in the path of scattered radiation. When I realized what I was doing (after several weeks) I stopped and my lips and chin eased up quite a bit. Got a lecture from the radiation therapists too!
My lips got so swollen that they had to cut the lips out on my mask! Not sure if the solution for you is as easy (all things being relative during the hell of treatment) as it was for me- but I hope so.

I also tried a medicated lip balm by blistex which was cooling and a bit numbing - if you haven't tried it you might want to!
Good luck to you!

[quote=Jenslp]Hey there -are your lips completely clean of any type of moisturizer during radiation? I had skin trouble on my chin and lips and kept moistuizer on during radiation treatments and made things so much worse - didn't even think about my chin being in the path of scattered radiation. When I realized what I was doing (after several weeks) I stopped and my lips and chin eased up quite a bit. Got a lecture from the radiation therapists too!
My lips got so swollen that they had to cut the lips out on my mask! Not sure if the solution for you is as easy (all things being relative during the hell of treatment) as it was for me- but I hope so.

I also tried a medicated lip balm by blistex which was cooling and a bit numbing - if you haven't tried it you might want to!
Good luck to you! [/quote]

Yup. Lips were always wiped clean before.

As an update, apparently I've had a severe reaction, enough to suspend the radiation for a week until my mouth heals. I was burned to the point that I was sloughing off dead skin cells from my mouth (GOOD CELLS, dammit!), so if you can imagine how literally raw the entire inside of my mouth was as well as parts of my lips. I have an appointment on Thursday to see how I'm healing, but other than a scrip for Sulcrafate(sp) for pain and speed healing, I'm hoping I still have enough natural bodily tools to get healed.

One thing I intend to ask on Thursday is why the radiation is targeting the opposite side of my mouth, when all the initial analyses, including CT/PET scans did not show any metastasizing to any other area at all. Ironically, the raw mouth and lips from the burning has been on that non-cancerous side. Good cells were damaged unnecessarily, imo. Why? Just because that's protocol? Seems to me that's, er, overkill.

Jen -- I literally have an arsenal of moisturizers, but found the best ones to be Bag Balm, plain Vaseline (although I did get a baby generic today that includes Vitamin E and Aloe Vera), and of all things a small tube of clear lip gloss that came with a Cover Girl lipstick. (Of course you can't find those separately..., so I'm glad other things work almost as well. Otherise, I'd be spending $10.00 on a lipstick combo just for the 2 inches of gloss!)

So sorry to hear that you are having such a hard time. Do your
doctors think your severe reaction is related to the Erbitux? Hope you find some relief very soon.

Glad to hear you're smarter than me Morgan!:) I was hoping you weren't and that I might have solved the mystery of your miserable mouth! Sounds very bad - I hope the week off will be helpful with giving you a bit of a break and a little relief.

It really is amazing that the body has such an incredible capacity to heal itself - thank God or we'd all be in real trouble with the effects of this damn treament regimen!

Maggie

I also question whether or not the "severe reaction" you are suffering through is related to the Erbitux. The anecdotal evidence is that the worse the "rash", the better the Erbitux is workint. But when it's not the rash but super sensitivity to radiation damage, that can be an indicator that the Erbitux is not working on the cancer, but on the "healthy" cells.
That's exactly what happened to me and in hindsight, the MO would have stopped the Erbitux and switched me to carboplatin.
Instead I kept getting Erbitux each week and each week more and more skin would peel off my face and neck until I had to start with Vigilon dressings for second degree burns.
It could not hurt to ask your doctors about this. Again, they still have no practical test to weed out the unfortunate patients like myself whose genetic twists render Erbitux worthless for head & neck cancer, although they do have them for patients taking Erbitux for colon cancer. But excessive radiation dermatitis and failure of skin to grow back is a signal of concern.
Keep the Faith
Charm

No, the reaction wasn't from the Erbitux. I've actually had only two of those treatments, but my usual weekly one scheduled for tomorrow was also canceled since I guess the plan is to partner with the radiation. I've had no reaction to the Erbitux except for the one day of constipation which was easily resolved :/, and which I'll get ahead of next time by popping a laxative as soon as I get home that day.

Today my lips are a little better, formed some scabbing overnight and itch a little (a good sign), but still extremely dry. I'm hoping for a little progress every day until I have to go back under that hideous thing next Monday. (That part is a breeze; it's what comes later, as everyone knows.)

I guess copying a smiley into a post doesn't give you a visual? A picture says a thousand words. ( ) Oh well, maybe I should read the directions. Ya think?

Now it worked. Go figure.

Hi, Margie
do you happen to have dental work that could be causing scatter onto your lips? Probably not but a question couldn't hurt.

You wrote - "One thing I intend to ask on Thursday is why the radiation is targeting the opposite side of my mouth, when all the initial analyses, including CT/PET scans did not show any metastasizing to any other area at all."

The target volume delivered to the tumor and other areas that would be likely candidates for it spreading will be as per guidelines (such as the NCCN ones on the site) and your doctors' judgement. In addition, there is going to be scatter to areas where they don't want the radiation to go, but can't just tell it to go in 2.5 inches, then stop. Your RO should be able to show you how the radiation is being painted on the tumor; if he hasn't discussed this with you in detail, don't be afraid to ask.

Thanks. I plan to ask specifically about the targeted radiation tomorrow, because no, it was not really explained to me (in lay terms). My teeth aren't the problem, because I've been a denture wearer for 16 years (can't wear them now, however). Ironically, I initially thought the sore on my tongue was caused by denture friction, which I'd had before but it eventually went away just like a kanker sore does. So of course I invested $900 in a new set of lowers, which were worn down and not creating a good fit with the uppers. Then this happened. Murphy's Law. I think I wore the new ones twice, so when cancer treatment is finished, I will need to go back and have my dentures refitted.

Thanks for the heads up, Charm, about Erbitux possibly being the culprit giving me the "rash" inside instead of outside. But I haven't had an Erbitux infusion for two weeks now, so one would think I would have had this particular reaction before now. (??)

Another question to ask tomorrow. (I'm sure he looooooves to see me coming with my little notebook!)

This is Day Three on the two meds for the hoof 'n mouth disease (Sorry, but I can't help but make jokes because if my brain tried to absorb all the medical terms, I probably would be dreaming in calculus all night.) The sloughing process is rather 'interesting' and it does seem to be working. I only have one lesion on the outside of my lip now, but my whole mouth area is still red and mean looking. Pain is tolerable, but the goo is back, although not collecting in my throat and gagging me like it did initially. I've found that Arizona ice tea with honey and ginseng works better than water for keeping the inside of my mouth fresh(er) and moist.

I'll give ya'll a full report after the consult tomorrow. I really appreciate this site and the opportunity to share, vent, learn. It's a Godsend.

Maggie

I'm still gathering my questions for a consult with the RO tomorrow (did I mention I only got to see his nurse last Friday?) My mouth and lips were in really bad shape by then, which she acknowledged and trust she passed along.

I'm anxious to listen to his prognosis, but if he doesn't answer the questions I already have, which include the dosage of radiation I've been given will be reduced, whether the reaction could have been a combination of the radiation and Erbitux, why the bruises from those Erbutux injections (last one 3 weeks ago) are still angry looking, and mention the fact that I can no longer feel the pain on my tongue at the original site of the tumor and what that implies (gone, I hope).

But I'm imploring any of the experts here to hopefully give me a response TODAY to this last question, and that is how often during the several weeks of radiation treatment is a new CT scan ordered to see if there has been any progress, or worse, any metastasizing? It seems to me that should be done at least once, half-way through. But I'm not sure it's standard protocol, or if they just wait until your regimen is finished and then do a scan.

Thanks in advance folks. If no one can get back to me, I'll just ask anyway (of course!).

Hey Morgan - I hear that they tend to avoid PET/CT's for a period of time after treatment - usually several weeks - because the radiation and chemo effects can often result in false positives.

Good luck getting all your questions answered tomorrow!

Hi Morgan, as Jennifer mentioned correctly, they avoid PET/CT for a period of time after treatment. In practise, this is usually one month from the last dose of radiotherapy.

Morgan,
That is out of my expertise as my tongue lesion was surgically removed. For those who had radiation as their primary method of treatment on this board--and there are many--they should know the protocol on that. But you are well within your rights to ask. Treatment is just not fun, is it?! Neither is it for a time afterwards, even now for me, things are not perfect. But, given the hand dealt, we are playing it, both of us, to the best of our ability, and taking advantage of our opponent--squamous cell oral cancer. If I asked or complained to my RO (my complaint was that the mask was unbearably tight on me at the end as I lost virtually no weight and my hair had grown--found out this summer I had lost some at the back though, now growing out). He tried to make me comfortable, but of course would always say, "you've got to make sure you kill the cancer by getting the target just right". So true. But we were killing/chasing "dust" I'd always think, as surgery supposedly got it all.

I'd be sure to check out Charm's idea on your chemo, regardless of the fact you have not had it as scheduled. Probably you've already gone & this is too late. Sounds like you are advocating for yourself very well.
Best,
Anne

Your doctors can see the progress with the info they show on their screens. Im not the most technical person but I have seen what my doctor would look at and compare previous pictures with. Also you should be seeing the radiation oncologist every week to get a thorough check up. I would see the nurses every single day and my doctor would make sure to say hello everyday and ask me if I was ok. Weekly he would spend about 30 minutes checking me out and talking with me.

The PET or CT scan is usually longer than a month out. Swelling and mouth sores will throw it off. My doc told me a PET or CT scan should be done no earlier than 3 months after finishing treatment or it will show false positives.

Also you should be seeing the radiation oncologist every week to get a thorough check up. I would see the nurses every single day and my doctor would make sure to say hello everyday and ask me if I was ok. Weekly he would spend about 30 minutes checking me out and talking with me.

I wish my ro WOULD spend more time with me!! Throughout this recent ordeal, he has not seen me once. It's been the NP who first saw a red flag with my red tongue (which she said was too early in treatment to be that red) and, well, the rest is history. So now, a week and a half later, with daily radiation suspended until my mouth healed, I begin again tomorrow and I was the one who finally just told her to pass it along to the doctor that I only intended to do FOUR treatments a week, at least for a couple of weeks, to diminish the risk of this happening again and then having to take a week off. It made no sense. Missing days of treatment are missing days of treatment, and it seems like dividing it into a reduced series back to back would be preferable to an entire week+ of none at all. Of course I had planned to "discuss" this with the doctor, but since he's been a no-show, I just decided I'd lay my cards on the table and if he had any objection, he would certainly have the opportunity to show his hand too. He hasn't.

I'll also continue with the Erbitux, but I was only scheduled for five of those anyway, two of which I've already had.

It does seem as though this team is stuck on rigid protocol (exactly the same dosage and timeframe) for everyone with oral cancers (I've talked to some of the other patients), which I don't like. In spite of every medical entry in credible journals I've read on the topic of designing a treatment program which includes consideration of a patient's current non-related medical history, age, etc., it's one-size-fits all. Apparently there was no consideration given to the fact that I take medication for high blood pressure, have COPD, which by itself is well controlled absent any mitigating factors such as stress, weight, and the like, and of course the fact that I'm 70 years old, my skin is naturally much thinner than it was in my younger years and older people take longer to heal from just about anything. But I'm stuck with it now, so just have to grit my teeth (in my case my gums!) and bear it.

Thanks for all your input.

Morgan,
I am sorry your RO not being helpful (or present). My husband also saw his RO every week for a formal appointment, and told him to call or stop in if there were any concerns.

Is your MO or ENT more communicative? You might want to have a chat with one of them about your concerns - my husband's ENT was the 'lead' and he always said to come to him if there were any problems.

My RO insists on seeing me at least once per week. It's terrible that yours isn't more attentive. Is he the only RO at your center? You really should be getting more attention. Especially since you are having complications.
I hope things go more smoothly as you continue with your treatment.

When I was on the previous set schedule, I saw the RO every Tuesday following the rad session and then he only did a quick look inside my mouth, but it's only since I had the burning reaction throughout my mouth that he seems to not want to be involved and leaves it up to his nurse practitioner (who is WONDERFUL, btw). I hate to project, but he just may be the type of doctor who doesn't appreciate patients (like me) who do a lot of research online. I usually did have some questions every week, mostly concerning relatively minor issues (like the headaches I experienced after the first week), but again those questions were only because I was not adequately informed of all the potential repercussions beforehand. For example, many here have recommended the product Gelclair for relief from the thick saliva, and when I asked if he could prescribe some, his response was [paraphrasing] that he wasn't too keen on some of these "newer" products. He said to use the Magic Mouthwash which had previously been prescribed.

But good news today. The radiation technicians put their heads together on my particular situation with my lips getting so badly burned, and they cut a hole in the mask so that my lips won't be exposed to the radiation. (Apparently the mask acts as a conductor of sorts??) So kudos to them!! All went well, and we were all smiling for a change this morning!

Maybe my experience is confirmation that unless a patient speaks up and demands at least an attempt at deviation from the rigid protocol, you're stuck with whatever they want to do, whether it's going to harm you or not.

If I had had the option of having treatment at Dartmouth-Hitchcock, I most certainly would have gone there, but it would have meant over a hundred-mile round trip every day, and I just couldn't afford that out of pocket expense.

Here's a thought: I've regreted most of my actions to some degree, all my life, they could all have been better, if only...
Thru all my 69years(in 2 months), I have been alive to regret, if I had taken some of my other choices, I would not be, other choices I probably would not be, still others, I might not be.
Point is, being alive,and better off than you might have feard, is MUCH better, than chosing a death sentence too soon.

The best way I've found to take my mind off my troubles, is to try to help others, not only takes your mind off yourself, but makes you feel better, because you are trying to help someone else.

like they say, try it, you might like it.

Is it worth it ?? For me the answer is no!
I went through 7 weeks of chemo/ rad that ended almost 5 weeks ago. I still feel like crap every day, have no saliva, am still nauseated half the damn time, eating through a tube in my stomach and have no energy. Then to top it off my fiancee who spent so much time helping and worrying over me suffered a breakdown and moved back to her home and is under the care of a professional. Every plan we made for the future is gone and I'm alone. This disease sucks pure and simple and sucks the life out of you. I'm supposed to have a post treatment PET scan in 8 weeks and it may as well be clear because this is the end of treatments for me regardless. I've already told my kids that my quality of life is worth more than the price i've paid and if I had it to do again I wouldn't. I'm absolutely sure many of you fine folks will not understand but the price for me wasn't worth it.
I'm done in.

Jack,
Don't give up. We are all here for you. I still felt pretty crappy when I was 5 weeks out of treatment, but I am still here. I didn't have my PEG tube out until almost three months after my treatments ended, and I had the fun of trying to dress for work wearing the damn thing! It is so sad about your fiance, particulary after what the two of you have been through. This disease does suck, and it takes a toll on our caretakers, too. My husband ended up having heart problems about six months after my treatments, and I'm pretty sure that my cancer contributed to them. We are both hanging in there, though. Keep the faith!

I agree totally you're suffering the after affects - things will improve - slowly. Give it time -

Jack,

Side effects of pain medications will cause nausea and fatigue as well as depression and severe mood changes etc. There are other prescriptions common to our disease that will cause various side effects as well, I would look at the drugs you are taking. I'd also suggest getting your adrenals, TSH and testosterone levels checked out brotha.

You're in your 60's as well so you've been naturally losing about 2% testosterone production since you were 40. Coupled with the pain medications, and probably antidepressants, traumatic stress, poor diet and lack of activity I'm guessing your testosterone levels have "tanked". Why does this matter? Let me tell you!

Testosterone is utterly important to the male system for recovery, mood (low T causes depression), outlook (balanced T enhances feeling of well being) and energy levels. Quick fact, the body "feels" more pain when in a state of depression due to brain chemistry, so raising testosterone actually can help fight chronic pain (also why low dose tricyclic antidepressants are often prescribed for pain as well).

Get your hormone levels checked brotha and it can help you through, from a guy that can relate as I had a rough time through recovery due to pain medications and hormone levels.

Keep your chin up

Eric

Hi, Jack
I agree - the disease and the treatment both suck. I am sorry that your finance is also having such a hard time.

Oddly enough, I think that one of the things that helped my husband the most was walking our old dog. That got him up and out of the house, with his hat to protect his neck from the sun, and let him do something normal, and make the dog happy. As Eric described above - there's all sorts of things messing with your chemistry right now. There are some things the doctors can help with, and there as some things you can help yourself with. Dogs, cats and small children are good to be around, if you can manage it, because they are non-judgemental (well, maybe that's not true of cats) and can make you smile. If you cannot have a pet yourself, many shelters have a volunteer program.

I want to wish you the best of luck with your recovery. It is terribly hard, but you still sound pretty fiesty to me. Keep fighting!

Reading Jack's posting reminded me of.......me. Last summer I felt exactly the same way. Exactly. When people asked me if I'd do it again I said "absolutely not." I was totally miserable and hated my life. I said if I have to live like this I'd rather not. Well, fortunately for me, and despite my lousy attitude, I kept trying to cure myself. In September (treatment ended at the end of May) I finally started to feel better. Mainly because I was able to finally eat. The feeding tube wasn't going to work long term (that exited in the middle of September). Despite what you're told, I don't see anyone living well on Boost or IsoSource. I needed real food. I'm doing pretty well now and my sense of energy and well being is back where it was before diagnosis. But if it recurs, I think I'm done treating it. I've seen too many stories about endless treatments with life quality deteriorating a little more each time. Not for me. I'm enjoying life right now. I'm 63 and had a good run.

Hi there - I think age has a lot to do with it - I've heard the same from my dad - he's blessed to be in decent health except his eyesight sucks. If he was diagnosed I think he would do the basic treatment and leave it. No one wants to submit themselves to major trauma in their 70s and 80s - I totally get that. I think were I to get to that age I would do the basics and leave it. Unless I were in super health. Not to say you shouldn't fight if you are older, as life is blessed and we all have friends and family we don't want to leave behind, but I'm saying I would definitely weigh the fallout from the treatment a lot more than I would at 40. However, dying from Oral Cancer is brutal and painful, also not something I would want to have to face in my 70-80's. It's a difficult decision... But it's also one not to be made just out of treatment, put it this way if a woman had to decide right away after giving birth if she was going to have another child, then our population would be a lot less..
hugs everyone... You are amazing.

Jack - Please DO wait a while before you decide if it's worth it - My son had the same feeling and told me (while recovering from RadTx) that if he had known how bad Tx would affect him he would never have agreed to the Rad. And he was only 33! Meds should definitely be checked out. Some of them have really bad side effects. Before his diagnosis, Paul had recently divorced, his then girlfriend left town, he was out of a job, with no insurance and facing bankruptcy. That was 5+ years ago. Now he has a a great job, a wonderful girlfriend and they just bought a new house! He told me recently that compared to where he was 5 years ago, today his life is better than it ever was even before cancer! Believe it - when someone tells you that things DO get better! Because they really do! So stay with us, and keep moving.

I also want to add that we saw the birth of our first grandchild, who will be celebrating his first birthday next week. Yes. Despite what we went through, it was worth it!

if i could only turn back the time... in my situation, i should not undergo treatment. my life has never been the same since this tongue cancer hit me. (well actually the second time. yes second time!) well let me just expand those.

i got diagnose with tongue cancer early 2006. i got operated and undergo radiation. after that i thought ill be ok. i have a tube to my nose for about 2 moths and i recover and got back eating normally again. but after a year my cancer came back =(
i undergo operation again but this time partial of my jaw was taken out. and that is the beginning of my life in hell. =( up to this day as of today i hate what happend to me. i even think of killing myself a couple of times. now i dont leave the house anymore... i got tube sticking in my stomach to feed myself. i cant talk clearly because of the operation... i cant mingle with people... my social life is dead... =(
i just keep myself busy on the internet reading and watching movies. ive been like this for 5 years now and its not easy.
btw im only 32 years old. this cancer took my life in early years. i got sick on the peak of my age... =( now i cant work... i cant have a family... thats why im always thinking of killing myself to end my suffering.

Iceman - I am so sorry for what you are going through. You CANNOT give up. I have not been where you are, but my son has, and even before he ever heard of Oral Cancer. He was just 32 and hospitalized for suicidal depression because of something that occurred when he was a child and which had just surfaced as a recovered memory. I know there are others here with similar experiences to yours. Have you talked to your doctor about this? Are you on any medications? - Some meds for depression actually cause suicidal thoughts. Who are the people close to you - family, friends? I HATE what happened to you, and to my son and to everyone here touched by oral cancer. That feeling can be turned around into a FIGHT mode. It cannot be done all at once. Fighting your way out of that dark hole can only be done in small steps. But things can and do get better. I've seen my son come out of that dark hole of depression and then the cancer, divorce and so I know it is very possible. Hang in there and let us know a little more about you and your life. You CAN do it!!

Hi there iceman - please don't give up there are several people here who've had the same surgery and fallout from treatment that you've had - Eric, Christine are just two of them - they're amazing advocates for OC and their spirit is tireless. We live in a twisted society where looks seem all important but there are people who can see beyond that. Giving up before trying will get you nowhere. Start by finding something you enjoy - cycling - drawing - fishing etc... Join a group... You will meet like minded people - and I'm sure that showing them who you are - will draw them to you. Plus do talk to a professional about your feelings. Hugs we're here...

I have already sent you several messages and emails.

I know its not easy going thru life looking different. Before I had oral cancer I was a very pretty woman. Now I am disfigured and have no teeth, probably will never get them. But even after everything I have been thru I am still the same positive happy person inside. That cant be taken away from me! Please contact me when you get your messages. Remember your cousin is who reached out to me over a year ago and we emailed for a while before you joined OCF. You can get past this low point!!!! I have faith in you!

Iceman,

I was 33 years old when I was diagnosed, I didn't have much of a shot at living due to late stage and invasiveness of my tumors, however I walked through the hell that was treatment and surgery.

After my mandiblectomy, I too became disfigured, disabled, and lost everything that I felt defined me. I needed massive amounts of pain medications to handle the pain, I drowned myself in self pity and secluded myself from the rest of the world really as I didn't like to socialize any more due to my appearance and the challenges I faced due to the side effects of treatment. I "loved" myself (maybe too much...yes definitely too much), my job, and my life before cancer and found myself robbed of all of it, the pain was almost too much to bear.

When I found these forums, in many ways I found hope again. I was able to interact with others who could relate to the road I now found myself on, they could understand my pain and frustration and empathize with my feelings of loss and despair. That is what you have on these forums my friend...people who care, who can relate...and ultimately help you.

Iceman (which reminds me of Chuck Liddell as I'm a huge UFC fan) what I would tell you is that I'm here for you brotha if you need. I care and I understand and I'm available to you whenever, no strings, no judgement, just support my friend. The hand we've been dealt as young men sucks ass and is a daily struggle, trust me I've lived it too. What I found in the end though is how I face it is my choice. I wake up everyday and make the choice to not let it beat me, not let it kill my spirit. I wake up everyday and choose my attitude and in a way, when I choose to be positive, help others with this disease, raise awareness, and live "above" what cancer has handed to me, it's like raising my middle finger and telling it to F#ck Off.

I'm an insolent cuss like that anyway, I won't let it beat me and that's what it will do if I focus on the negative, so instead I put on what I consider a smile (who can tell really as my face is all f#cked up) and in doing so stand in defiance to the disease that tried to kill and break me.

Take this one by the horns brotha, let us help you see that there are ways to enjoy life if you choose it. I know for me, I am more than what I look like, I am more than what I'm able to do physically, I am more than what this disease has taken from me. You are too my friend, you just have to believe it.


I'm here when you choose to start fighting back, but only you can make that choice my friend.


Love you brotha, keep fighting


Eric

Dear Iceman,
Your reactions and feelings are completely normal and understandable. We survivors can totally relate. I, too, came to a point where I decided life wasn't worth living. But, I'm so glad I had doctors, who were like coaches, who pulled me from the depths.
In a nutshell, this is what I learned: Your life as it is, feeding tube, disfigurement, slurred speech and all, is an OPPORTUNITY. If only you could take a different lens to see your life. You don't need to be stuck at home. All those people that know you and love you are looking to you to teach them, show them, how to overcome adversity. There is a woman out there who will love you for who you are...there are women out there just like you!! Have you read the book, Autobiography of a Face? Story of a young girl with a face disfigurement.
Get on the dating sites, and let people know all the talents and traits you do have that make you special. Certainly, you haven't lost any of those from oral cancer. Get a photographer to capture the beautiful side of you.

Yes, your life is different, but you can make it what you want if you get yourself OUT from behind the computer. No need to hide who you are - empower yourself by educating the world about self-esteem, oral cancer, and how to be a friend, and how to interact with someone who has differences.
There are PLENTY of jobs you can get that don't entail speaking to clients...where you can find a sense of importance as well as some joy.

I live in Easton PA, and grew up in Englewood, NJ, with family in Morristown and around. How about you work with me to raise awareness about OC? Let's talk. email me: [email protected]. If you decide that life isn't worth living, that is your choice, and I would understand. However, give an alternative a shot. First, you need to accept that there is a chance you can be happy and find joy in life. Then, act to make it happen. With the help of friends and family, if you can't make it happen, you will have tried your best. That is all anyone expects of you. Contact me. Eva

Thank you all for all your concerns.... but i guess all of you understand how hard a life can be for a person with a condition like this. some people can cope and some can not, esp me. in my condition, i have to rely on others for me to live... and with that, sometimes i cant look @ the ones whos taking care of me because somehow i know im a burden to them. and thats one of the frustrations i have.

I can only speak as a caregiver to my son. I know he went thru a time when he felt guilty for all that I was doing for him ( which was so wrong!). He talked to his therapist about this who set him straight asking if he would not be ready to do the very same thing for his daughter. That made him understand. But more than that, no matter who takes care of you, whether it's a volunteer, a paid caregiver or someone that loves you, the very act of caring for you is providing a purpose in their lives. For me, caring for my son not only provided a purpose, but it kept me from losing my sanity and succumbing to the same depression he was in. We were both in a deep dark hole and I knew I had to be the one to get out of that dark place and drag him out behind me. Doing the menial things like getting his food, doing his laundry and cleaning the litter box (ugh, he had three cats!) were things I was SO grateful for because it gave me purpose and kept me in the "fight" mode. I HAD to do it as much for me as for him! By giving up, you are denying someone a purpose in their lives. It does make people feel good to do something for others. If you can acknowledge it in even the smallest way, it makes them feel even better. You have gotten such excellent suggestions above. Also, if you take Eva's suggestion to spread awareness, then you will be taking care of what Eric notes in his signature line: ""He who has a "why" to live can bear with almost any "how".