David --

If you are a non-smoker and have tonsillar SCC, you may well be HPV positive -- this affects both prognosis and response to treatment (better) but you should be tested. If your hospital doesn't do it, Johns Hopkins does:

http://pathology.jhu.edu/labservices/hpv.cfm

There is a lot on the OCF web site and also, this forum, about HPV since it is now generally recognized as a major factor in some forms of this disease. Lots recently due to a paper published this month linking HPV to tonsillar and base of tongue cancers.

As to treatment, the recommended treatment for a stage III or IV oral cancer is chemoradiation. If it will make you feel any better, my husband (who had very similar experience as you with neck lump etc) and who was treated at Hopkins, says the chemotherapy was a "non-event" due to the excellent new antinausea drugs and careful oversight, the real difficulty was with the radiation and its side effects during treatment. The usual drug is cisplatin but the much less toxic drug carboplatin is being used more widely and you should ask about this (my husband got carbo- only).

IMRT is the most targeted form of radiation, and allow the radiologist to avoid the many deligate organs in the area of the throat, and helps preserve salivary function. Get on the OCF web site itself and look all this up before meeting with the doctor. Ask about salivary gland preservation, swallowing therapy, and pain and other side-effect management -- the PEG is there to help you stay hydrated and fed during treatment but you will need to try to continue to swallow (even tiny sips) during therapy to maintain the ability. It can be lost!

This road is hard but many get through and resume completely normal lives, so go into this with confidence and optimism...

Best,
Gail

David,

Don't talk to the rad doc (RO) about chemo. Talk to a medical oncologist (MO) who specializes in chemo about the pros and cons of concurrent chemo radiation.

What hospital are you going to? Maybe someone here has specific experience.

Remember that the intense Tx most of us endure only lasts for a 5 to 7 week period and then the slow but gratifying recovery period begins. That is a small time to commit to when the goal is to save your life.

Thanks Gail and David

I have an appoinment with the MO on the 5/7/2007. I will see what they say. I start Radt on thursday so I will have about 6 RadT before I get in with them. But I will listen. I am going to a Radolcolgist called Cyberknife/Ocoligist it is located inside of Centrail Baptist Hospital in Lexington KY, So far they seem to keeping my best interest at heart and they are being straight forward with so far. Where my proublem is, I think he is treating it more agressive than the ENT had in mind, but I am taking it as a good sign. Beacause the ENT said is was just like a mop up procedure, since they got the nod and the sorce(tonsil). But as I have learned from people on here their is no such thing as a mop up operation. It Cancer and I need to take it as if it has control and do everything as if they have not caught any of the previous bench marks. So if nothing else I am more educated and have got to take charge of my own treatments.

sorry 6/7/2007 never promissed to be a good speller either lol

Hello Redbus. Read the bottom of my post and you will find that we are very much in the same boat. I am 2 months post treatment. I had 33 rads and 2 cysplatin chemo treatments. I will have to agree on the info about the concurrent chemo and radiation. My docs pushed the two be done together. I had 3 nodes involved and am now waiting to do a final scan on 6-1 to decide on the neck dissection. I went to the Markey Cancer Center at UK. Where are you from in KY? I'm from Somerset. Good Luck

lee
I am in Richmond

Just right up the road. Keep us updated on what you decide on your treatment. You can make it with the chemo and rad if you choose to do both. Even though I couldn't take my last chemo because my blood counts bottomed out I really didn't feel really bad until the end of treatment. I was pain free up until my sixth week of rad. I feel pretty good now, I'm just waiting for a little saliva and to return to eating. The good thing is I now have a workout partner for the gym. I work out with the same weights as my wife. I'm getting stronger everyday though.

Hi David;

Just reading your initial post reminded me of exactly what I went through 2 years ago. So exact that a chill just shivvered up my spine !

Then reading the replies to your post prompted me to cast my vote along with the others. I strongly urge you to go for the chemotherapy along with the radiation. I had heard about the nasty side effects to the chemo, but the side effects of any post-radiation cancer is far nastier !

Let me share a scary (but as it turned out lucky) phase of my situation. After 7 weeks of radiation, 3 double doses of chemo, and a huge radical neck dissection, I was happy with the results. The PET scan could find no evidence of cancer, and the ENT had carved out what was left of the shrunken tumours in my neck. I figured it was beat.

However, during the routine pathology of the 27 lymph nodes & soft tissue that was surgically removed, evidence of a non-hodgkins lymphoma hiding therein was discovered. My newly assigned, new-to-the-team chemo oncologist had a hard time explaining this to me because I was simply shocked beyond comprehension. I had lost 50 pounds, couldn't eat normally, had zero energy etc. and had survived this far against very dim odds. The only thing keeping me alive was the knowledge that I was the one person in ten of my cancer group and stage who would make it statistically. After what I had been through, this news was devastating.

What was worse was the fact that they wouldn't be able to treat it. Apparently, had they known the lymphoma existed when they started treatment, they would have treated it exactly the same way that they treated the carcenoma in hopes of killing the two birds with the one stone. But seeing as I had already received the maximum amount of radiation I could safely receive, there wasn't anything more they felt they could do other than more testing and possibly more chemotherapy at some point in the future.

Things looked bleak. I remember clearly that in addition to my new chemo oncologist being in the room that morning, my first chemo oncologist (who ranked below the radiation oncologist in my overall treatment plan) was also present managed to sneak over and whisper to me along with one of those knowingly winks of the eye: "Don't worry John, nothing could have survived the 3 chemo-recipes I mixed up for you...." !

I wanted to believe him so badly. And happily, he must have been right. All the subsequent CT scans, bone marrow biopsy and regular follow-up exams could not find any further trace of the lymphoma, and everyone was cautiously optimistic that the treatment I had already received had killed it during the first round, and they collectively decided that no further treatment was necessary.

In my case the chemo was not optional. Yours apparently is optional. My treatment plan was all or none, and I went for everything recommended and then some ! Had the chemo part been optional, I still would have insisted I receive it.

I was scared about the side effects of the chemo, and got myself mentally prepared for a huge battle. It worked, because I sailed through the chemo without losing a single hair on my body, nor did I suffer so much as an upset stomach. And they had filled me with Cisplatin, listed as one mean chemo medicine with acute side effects, mostly vomiting. And I am one person who will do anything to avoid vomiting, I am so freaked out about it.

The point is David, I would not have made it without the chemo. I know that for certain. Even if it were in doubt just a little bit, could I really afford to be wrong just a little bit ? In my opinion, your best shot for a clean kill of this beast is with the first shot - give it everything you got, and then some if you can, and make sure your mind is right too !

From what I understand, the radiation gets the tumour directly, the chemo gets what has travelled to other tissues that didn't necessarily get radiated, and the surgery mops up what is left to be done, if there is anything left to be done. Its hard on you, but as others have pointed out, once is the number of times you want to experience this treatment and medicine per lifetime.

As you already know, you have definately come to the right place for information and comraderie, and I wish you every success with the upcoming battle.

Feel free to email or message me should you wish to discuss the matter in more detail or simply need a sounding board or a rant target !

Good luck, and good cancer hunting !
JT2

David,

I still don't sense you understand that you have a VERY AGRESSIVE STAGE IV CANCER attacking your body and it has already spread to your lymph nodes and the next place it can go would be your lungs and your brain. There is no Stage 5, stage IV is the worst stage of cancer. I would not wait to see your MO. I would be on the phone right now and demand an appt. The chemo works best when given before your first rad and is most effective when the radiation is given while the chemo is circulating in your body. That's why most of us get our 1st chemo the first day rad is to begin.

Don't wait for others to make decisions for you, they are not the ones risking their life on their decisions.

Sorry to be so pushy but the next post I want to read from you is...I saw my MO today and....

Well Davidcpa,
I did what you said I got an appoinment with the MO, but unfortunitly I went down for week an a half with a peg infection and a Kidney stone in the hospital. So I missed that appoinment. They treated the PEG proublem and the stone blockage and recieved readation every day. I have set up another appoinment to see the MO. why they would not come to the hospital, I have no clue. I am now day 12 of the radation treatment. Having alot of proublems with eating but hanging in their have only lost 13 pounds in 2 1/2 weeks. they are wanting me to have 3200 calories a day. Their is just no way. I am afraid I about to have to start to use the PEG for food, but am trying to hold off because I can still eat some exspecailly breakfest meals and can get liguids down, but the thick mucus in the bottom of my throut just make me gag. They have giving me xanax and marinol now to try and help with appetite and nausia. You where right I ask the Dr. and he says I do have stage IV, but they say it is still a clean up procedure, because of the sorce being found. Man if this is clean up I am so sorry for all of you that are going through this not knowing the source and it make me feel like such a wimp, but dang it, this tears away at you. So every body just keep going and keep talking . Because your encourgments, that there is lite at the end of our tunnels, is what is keeping me going in my regards.

Thansk to all
David.
Once again sorry for the spelling, but considering all this I hope you all understand.