I like the little smile icon...He is grinning, and his smile is not crocked like mine LOL!

Wow...Today my left neck is the size of a catalope! I am trying the "massage" technique, but any ideas are helpful.

Now, to the reason I "copied" my post from "Introduce Yourself..." to here.

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

Also, the larger facilities seem to have many more clinical trials for which I may qualify.

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!

Its really nice your partner is able to go with you if you go far from home. I didn't have that. I ended up getting my chemo and rad at the hospital 15 minutes from my house because I really couldn't see being in a hotel room somehwere for 7 weeks by myself, either in terms of cost or in terms of my mental health. There's a lot to be said for being treated at home. Especially the dog thing--my elderly dog was my sanity-saver at times.

Anyway, since Seth is going with you, I would go where you think you can get the best treatment.

Thanks Nelie...Where did you go? Were you happy with the quality of care?

I just left Stanford after my surgery there and would not go back unless I REALLY had to.

Thank you for your comments and feedback..I agree being with our lab would be nice, and I missed him so much with only 5 days in the hospital I can't imagine 2 months.

My parents brought him to the hospital a couple of times, and I walked down to see him in the parking garage...It was nice.

Of course, we COULD take him with us whereever we go...

Who knows..again thank you for your feedback.

Michael

Michael . . .


If humidity doesn't bother you too much and you are willing, I cannot recommend to the folk at Georgetown highly enough . . .The Lombardi Center is quietly reknowned for its head and neck work and the guys and techs and nurses are way beyond the pale in terms of humanity and compassion and friendliness.

Tim

the humidity would be nothing comparred to Houston in July/Aug...

Could you share any direct contacts there with me? Thanks!

Michael -- Check your hotmail email.

Tim

Michael, In some ways, I did go to a CCC. My local hospital (Cayuga medical Center) has formed a partnership with Roswell Park in Buffalo, which is a CCC, and my radiation oncologist is from Roswell Park--for now he is here three days a week and there the other two. They have the latest in quipment for IMRT radiation right here. That's the thing that made me decide it was OK to stay. But it was a hard decision.

When I was diagnosed they had JUST opened and there have been some issues with that--namely that, for example, they aren't set up to do clinical trials here yet (not really an issue for me) and the coordination between my rad oncologist and the other people on my "team" (ENT, medical oncologist, dentist) is not nearly as tight as it would be at a CCC. And none of these folks is specifically on a head and neck cancer team. As I understand the way Roswell Park is organized, the people that work on specific types of cnacers do not really include the rad. oncologists who are kind of separate and make their own decisions about radiation treatment in which every case is reviewed and a recommendation is voted on by all of the rad. oncologists on staff.

I got a second opinion from the head and neck group at Dana Farber in Boston because of this, and because the first rad. oncologist at the hosptial here (hired by Roswell Park folks just to run the faiclity here)was saying I didn't need rad (he later left--rumor has it was asked to leave because he was making wierd recommendations but that could just be rumor and that's when my current rad oncologist, who has been at Roswell Park for years, started practicing here three days a week) .

You might want to go to at least two places for opinions on what treatment would be best for you. I found out that even after that, the opinions from Roswell Park about what treatment I should have and the opinion from Dana Farber differed. D.F.'s was more aggressive (this is partly because I'm stage II and there's more gray areas there I think) and I ended up insisting that the facility ehre follow their recommendations.

And they did end up doing that here, although I wonder if they really did absolutely everything they could to keep my chemo treatments proceeding on time (which is important since they were only being done to amplify the effects of radiation, which did proceed more or less on time). I had a low white blood cell count that prevented the third chemo for so long that rad. was long over by the time it was high enough. I think there are proactive things they could have done to prevent that (such as that medicine they advertise on TV all the time that keeps up your WBC)but I am hoping that since the first two cehmos affected my blood so strongly, the two chemo treatments I got also did what they needed to to kill extra cancer cells.

One thing to be aware of is that the fancier types of radiation (IMRT) require a lot more lead time to program after they've done a CT scan to map your head and neck. Two weeks is standard based on what they said both at DF and here. If you need teeth pulled, they should be pulled before the mapping by a couple of weeks. So that's basically a four weeks delay between any teeth you need pulled and when rad can start. And timing is important. ideally there should be no more than 100 days between your surgery and the END of radiation (standard radiaiton time is 6-7 weeks). Mine was longer than that, unfortunately, because of those things--and that I didn;t get teeth pulled until I had gotten the second opinion, which took another couple of weeks. So you need to get opinions quickly.

Good luck with that. I got a lot of feedback and help from people during that time that was invaluable in getting the treatment I finally got. Lots of good advice and experience in here.

Nelie

Thank you for the GREAT post Nelie. I have printed it for future reference.

Thanks again....

- Michael

Tim:

I've gotten the email, and wanted to thank you on the board for your generous and graceful information...

You're a great guy!

- Michael

Hi Michael

Along with everything else, you'll need to see your dentist about preparing your teeth for the aftermath of your radiation treatment. Your dentist may want to start you on fluoride trays if it is likely that you will have a dry mouth and therefore be more susceptible to tooth decay.

Your doing so well, lots of love from Helen

thanks.

I've given a lot of thought to floride trays and am leaning against them, even if recommended by my dentist.

I am finding more and more links to SCC recurrance and floride in various studies so I am trying to filter that information.

You make a good point about planning though and I appreciate the feedback.

In fact, seems radiation itself has a statistically significant result of recurrance from the radiation itself.

Of course, it could be the classic "chicken or egg" thesis...who knows.

Be well...Michael

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!!

:-(

Hey Michael, I just posted a response to this in the other topic under Introductions. Also remember that "bad" or even "very bad" are *statistical* in nature. It means there may be more of a likelihood of something you don't want to happen happening in the future, but it doesn't mean it's a foregone conclusion. You are an individual, not a statistic.

I know. I find myself latching on to the statistics quite a bit.

I just feel so scared and anxious.

They first told me that my stage IV usually has a 50 - 50 chance of 5 year survival at Stanford...This was before we knew about the additional node(s) and the 2 other places it has invaded.

Can anyone else tell me comparison to their pathology results?

Does this mean I am T2N3 now? Stage V..?!

Doesn't matter what you are Micheal. The stat's mean nothing to you or I. We will either survive or we won't. The thing to focus on is your treatment and survival. You are just starting on your journey, don't give up before you've begun the fight. It's a long and bumpy ride but many have traveled it and survived. You can To!!!

All My Best, Danny Boy

Michael, I know full well that Doctors are not infallible[I was married to one for 18 yrs.] I do know that specialists have a tremendous amount of training and you can't possibly learn what they know in a few months. You've got to put your faith in someone and go for it. We are pulling for you. Amy

Michael,

I second the whole it doesn't matter what stage you are. After my moms so called "recurrance" her ENT said that she could no longer be staged after we `.

Sorry about that my 2 year old just started hitting the keys.

After we heard that we no longer thought about staging and statistics. Try to stay positive. I know how difficult it can be and how much the human mind tends to wander but try not to dwell on the statistics.

Sending you prayers and hugs,
Dani

It's so hard not to get caught up in the statistics, especially on life threatening issues one knows so little about.

Just wanted to give a quick update. I am scheduled for a consult with an oncologist and radiation oncologist for June 11 and 12th at MDAnderson.

I figured I shouldn't just be sitting around having pitty parties after my surgery, I am fully functional and pain is mostly managable to the point of being barely noticed with a couple of Tylenol every several hours.

So, I'll leave Sunday afternoon, and am working on possibly getting in for a consult with Memorial Sloan, NY for around the 13th or 14th, I could just go straight there from Houston before returning to Nor Cal.

At least this way I'm not just sitting around waiting to die :-)

Screw the Drs who tell you "BAD NEWS"...It was only at his insistance that I did the surgery first anyway...All this means now is that I should have done radiation / chemo as my 1st line, and now I'll have to do it as my 2nd line since the surgeon failed to get it all.

Thank you to everyone for being so kind, warm and supportive!!!!

- Michael

Please stop being so hard on yourself, Michael. You did the research and made a decision and nobody (not you & not 100 docs) does absolutely KNOW that one approach will be better than another. You take your best shot and keep fighting. You can do this. Hang in there! You are doing great.

Thank you ! Just for the record I am traveling to both ccc's to determine which one I will have my radiation and chemo treatments at.

I'll be leaving Sun AM from San Francisco, so I'll post the info here Monday.

Thank you for the encouragement!

Michael,

You did not make the wrong decision having surgery first. Going either way, there was no guarantee that all of the cancer would have been gone after the first line of treatment. You are doing everything exactly right and you are giving yourself the absolute best chance for survival. Do not look back and second guess yourself -- just throw everything at this disease that they offer you. The treatment will suck, you will have some very rough days to come, and no one has a crystal ball, but give it your best shot.

Hang in there,

Barb

Hi Michael --

I am surprised that you did not list Johns Hopkins, which has probably one of the top 2-3 head/neck cancer centers in the USA. We were up at Sloan -Kettering last week for a second-opinion consult (which went very well, excellent rapport with their very caring staff.) Dr. Pfister so much as said, you don't need to come here if you have Hopkins in your back yard (which we do). However we have not ruled S-K out because having a good connection with one's doctors is paramount in this sort of situation, and we have yet to complete all our Hopkins' consults so haven't met everyone.

The wife of a friend who lives in Trinidad (the island) was diagnosed with OC and they went to M.D. Anderson, just stayed in a long-stay motel while she underwent the treatment. Also very positive recommendations....

Just to say -- it is your life and who and where you have treatment is as important as what is done.

Barry Cooper

Male, 66, Stage IV, T3,N2b,M0, SCC right tonsil and b.o.t., 2 nodes, tonsillectomy 6/21, no other treatment as yet

Thanks Barry!

I am in HOUSTON tonight planning to meet the team at MD Anderson tomorrow...

I'll let you know how it goes.

Later this week I am going to Sloan-Kettering to meet with Dr Pfister and his team.

Thanks for the encouragement and let us know how you are on your journey.

- Michael

The "tingly" feelings are starting to drive me MAD!!!

The "Pins and Needles" feelings wake me up a few times throughout the night.

My entire right face, shoulder and chest are still mostly numb, but have this twitchy tingly feeling...

At first it was cute, kinda like someone was tickling me, but now I think it is causes mental illness!!

Any ideas? How long does this last? Does it get worse, better? Others have the same thing?

Thanks!!!!!!!

Well...It's 4:45 AM here in Houston and I haven't slept much at all.

"it" continues to get worse.

I don't know what is going on but every 20 to 40 minutes I am jolted awawke by the "tingly feelings"...I realize this sounds like I am saying "the aliens are following me again", but seriously, it's affecting my sleep (or lack of).

I have tried everything I can think of, so ANY ideas, no matter how remote or whacky are appreciated.

I will most certainly be discusing this with the Stanford Doc in the morning...

UUUgggh! I am so tired. Thanks for listening in the mioddle of the night to the ramblings of a derranged, sleep deprived, frankenstein... :-)

Hi Michael,

Assuming that some nerves were affected by your surgery, the tingly feelings possibly could just be the feeling coming back now that things are starting to heal. Sort of like when your foot or hand falls "asleep", then tingles when it "wakes up". If it is more of a twitch, I think that may be a different matter entirely. There is a very, very small possibility that you could be having focal seizures. Definitely ask the doctor this morning.

Rosie

I think Rosie could be right. I had some tingly feelings after my neck dissection, though I don't rememeber them being bad enoiugh to wake me up. I treated everyone as good news because my ENT said those were signs of nerves coming back to life.

Michael, I'm wondering how your meeting with the MD anderson team went. I've been thinking of you and hoping it went well and you are in warrior mode ready to fight your battles with this disease and win them.

I have had the twitchy thingy back in the hospital...Very slight and only a couple to a few times...

The ENT team there seemed to think they were no big deal.

This is more like "pins and needles" like you described when an arm falls asleep, etc.

I will discuss it for sure with the Dr later today.

Thanks!

PS: I have the latest info on MDAnderson under my other thread...

Michael,

I had a lot of the neuralgia you are describing and it did wake me up at night. There is medication you can take for it but it will make you sleepy -- I chose not to take it but if it is really making you nuts, then ask your doctors. I looked at it as a good thing because it meant that the nerves were regenerating and that maybe my smile would come back. After almost six months it did -- so try to hang in there. There may be good stuff coming from this discomfort.

Barb

Good Luck Michael !

I had an encouraging day at Hopkins today, as well ---excellent consults with Dr. Forastiere and Dr. Lee (med onc and rad onc, respectively) and feel much better about my condition and treatment. I just need to make some more decisions about chemo drugs -- pros and cons re side effects, etc. I would like to avoid more hearing loss so they are cautious about cisplatin for me, for example.

What is great about a center like Hopkins (or Sloan or Anderson) is that the doctors work together and actually talk to each other. For example, we went in to see Lee he had already been briefed by Dr. Forastiere about my hearing issues and other QOL concerns and had already formulated plans to address these.

Keep us up to date on your progress and I will do the same for mine.

Barry

Barry (with apologies to Michael for sidetracking his thread) I had a very strange hearing change while on cisplatin, was switched to carboplatin and taxol, and hear perfectly today. There is a small percentage, less than 1% actually, who react badly to cisplatin. I am one, but the other two drugs did the job and spared my hearing completely. Also, the two drugs I was switched to had only one side effect, which was loss of my hair, not all body, just head. And that grew back just fine.

For what it's worth my hearing was real bad in my right ear for a few days after the surgery, and even today on the airplanes I had a ton of popping in my ear and slight pain, with ringing.

It seems to be getting better, what was the cause of yours Barry? Sorry I jumped in mid-thought.

Joanna, Carbo/Taxol is the combo MDAnderson is recommending for the Erbitux trial too.

Does anyone have an opinion on radiation? Is it the same anywhere you go, or does the facility make a difference?

Tingles!!

I asked the ENT at Anderson and he agrees it is nerve regeneration.

I don't want to take heavy sedatives, anyone have experience with anything else?

A Stanford nurse had what sounded like a good idea, Benedryl, but it doesn't touch it.

The tingles seem to be worse when I try to sleep, or exert myself (ie: reaching for the TV remote:P ) or even chewing food.

Any ideas would be appreciated!!!!

Hi Michael --

Actually, cisplatin hearing loss (primarily in upper registers) is greater than 1% -- but a lot depends on the dose. If it were the primary agent (mono-therapy) there is a much higher risk. Neurotoxicity (including hearing loss) occurs in about 85% of patients at doses over 300mg/m2. But at the dose I would be getting along with radiation, one rad onc said less than 10% chance of a problem. However Dr. Lee (who is the senior) felt it was greater than that for me as I already had auditory problems.

My hearing loss is in part due to simple aging -- men tend to lose upper registers as they age -- but also as a boy I had some serious ear infections which damaged my hearing. My brother who is younger had same problems, he is deafer than I am!

I will be getting carbo/taxol to -- would have liked to have entered an on-going trial for a new EGFR drug but it involves cisplatin and after some discussion, was recommended against it. I don't think Erbitux is available but
will check.

Good luck,
Barry

Hi Michael,
A couple of years ago I was going through the same decision making process you are right now. I considered MD Anderson and Sloan Kettering when it came to my mom's treatment. I contacted them, and I believe Johns Hopkins as well. All excellent institutions from what I've read. To heck with the humdity of Texas. If I'm not mistaken, Lance Armstrong and Brian Hill both went there for treatment. I spoke with several doctors at each hospital and they told me I was in good hands right where I was in Chicago...so we decided to stay put. Had I not heard such wonderful things about the docs where my mom sought treatment, I was ready to pack our bags and head to Texas. At the time, they seemed to have the latest technology and the email responses from the doctors was very comforting. In all honesty, each doctor from each hospital I contacted was wonderful. I can't say enough good things about the docs that were kind enough to offer help during that time. I wish you the best. You are taking a very proactive role and are doing a great job researching your options. Take care.
Dave

Joanna was qouting the statistics for total deafness involving Cisplatin. I had the same childhood issues as coop, infections, etc. I am also a musican and bassplayer and have spent many years next to a 120 dB ride cymbal. I had Cisplatin and my hearing actually improved, especially the midrange. I had three hearing tests during chemo, one of them was a baseline which should always be done if you are on Cisplatin. There are definable warning symptoms if you are in the 1 percentile group so, like in Joannas case, they were able to switch her to carboplatin which is a less toxic relative of Cisplatin. I had hearing problems for a long time post rad due to radiation damage to the eustacian tubes. It eventually all healed up and everything is back to normal (well the "new mormal"). But for a while I had a lot of pressure buildup and pain. It even showed up on the MRI's.

Cisplatin remains one of the most effective adjuncts to radiation so don't be hasty to rule it out. Most people don't have serious problems with it. And the antiemetics work pretty well these days.

In the latest survey, MDACCC was the top ranked NCI/NCCN CCC. MSKCCC was #2. The site has the rankings.

I think the latest rankings just flipped them again, that were released a couple of days ago by US News & World Resport.

I spoke to an Oncologist with Duke again last afternoon and he reminds me how much success he is having with Erbitux.

I am so torn between IMRT or Erbitux, it seems cruel that I can't have both.

I may consult with someone at Johns Hopkins since they not only have an IMRT compatable (EGFR) Inhibitor study, but they are actually using Tomo Therapy, which I think is even better!

HI, Michael. John also has the tingly thingy and twitches in arms and legs. It started after the 3rd week of rad and is maybe even a little worse now[Rad ended 7-8-05] He lived with it for a while, but finally started taking a 1\2 a strong pain pill to be able to sleep at night. His surgeon also says it will go away at some point. Hope you are getting to spend some time on your deck. Amy

Thanks Amy...

It is SO nice to be home! The high here today was 62, and we watched the 100 + all over the US.

My parents are up and we all had a nice glass of wine of the new deck watching the firey ball of the sunset.

I am starting Loratadine (10 mg) and it seems to be helping (maybe) he tingles!!

I'll let you know.

- Michael

Micael and
Seth, do you have brochures? When John is well and you are well, I think a trip to sunny but cold[62 degrees in July?] California would be in order. We would be paying guests, of course Amy

I agree, this is starting to sound like a good vacation destination for sometime in the future when we are all well--maybe next summer?

I hope you slept well last night Michael, after trying the new meds. Possibly a nice glass of wine with your loved ones and a beautiful sunset might help as well!

Hi Amy and Nellie:

You all are welcome anytime..!

We have lots of room, maybe we could have a "reunion" every once in a while (maybe in different parts of the country every year?)... Is there something like that already coordinated?

I slept better last night, and this morning seems to be a little better (tingles wise).

The new meds I got (OTC) seem to temper it a little.

I will certainly be asking on Monday at Stanford about this?! Also, I can "feel" something on the right tonsil bed (???) like itchy kinda, but swollen too maybe? I think it's just healing and normal, but I may have mentioned 2 of the Dr's I saw are concerned that it has already recurred or that the surgeon didn't get it all.

We'll see...

- Michael

The doctor got all of mine but 2%. This 2% were on the ligaments and he said if he removed it I might have never been able to speak above a whisper. The radiation is to get that percentage with no change in the voice.

Have you spoken with you surgeon? I know I would. Michael you have seen you say 40 doctors? I would be afraid of so many conflicting results. I hope you will start treatment soon and not wait any longer than is necessary for your healths sake.

Blessings to you,
Barb~

Hi Barb:

I have "started" treatment in the sense that I had the surgery on June 29th, and am just waiting to heal 100% to start radiation and chemo.

I plan to start radiation and chemo (possibly with Erbitux or other neoadjunctive treatments), within a couple of weeks.

First I have to have my dental work done.

Thanks for the good wishes!

- Michael