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Wasn't a branch cleft cyst, primary was in tonsil, metast to lymph nodes in neck.

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

HEY SOCCERFREAKS & VINNY59....Finally have a plan. Found SCC in the left tonsil, laryngoscopy and endoscopy otherwise clear. Removed left tonsil and both adenoids. Could not get all the SCC at tonsil base but say it is easily treated in place. Called it Stage IV because it had already metast to lymph glands associated with the branchial cleft cyst removed previously in May. Ultimate diagn is HPV16 positive Stage IV SCC which Oncologist says is the "preferred" form of cancer if you have to have one and is easily treated in place with high success rate. Going for PET and dental this week. Looks like 6-7 wks. of cisplatin on Mondays, IMRT Mond-Fri., all outpatient.
Perhaps amifostine to protect saliv glands. Need your thoughts on this program and tips on mouth healthcare,diet etc. What about fatigue, can I continue to walk daily, continue exercise equip. as long as I feel up to it, will they help or aggravate situtation? Trust and greatly respect you guys' and anyone else's valuable experience. Not going to be fun but I think doable. Feel better having a plan. JKINOBAY, at your service.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Although it may sound odd, congratulations on the diagnosis and treatment! It sounds as though the doctors (and, just as importantly, YOU) have very high hopes, and I am really glad to hear that!

Re the amifostine, I took two shots each morning prior to radiation treatment for the same purpose you describe. Did it help? Well, I do have my salivary glands intact...Did it help? Well, it would be easier to answer if I did NOT save my glands, you know? I am going with the assumption that this did help, and would make the same decision if I had to do it over again.

Re mouthcare, this really IS critical. If you've read other posts herein you note that it doesn't take much to find yourself with mouth sores, trench mouth, infected teeth, etc.

My doctors gave me Biatene mouthwash and toothpaste products designed specifically as antibacterial agents that also worked well for those with dry mouth. I also discovered that a water pic (or generic copy in my case) is outstanding for getting to hard to reach places and to generally give the mouth a good blasting.

Obviously, you will want to verify this with your docs, as your issues are probably different than mine were.

Re diet, it is hard to answer without knowing more about your capabilities for ingesting food and whether or not you have had or will have drastic weight loss as a result of the surgery, chemo and rads (as I did). Please advise.

I think your doctors would encourage you to continue your daily walks and exercise regime if you are up for them. In my experience, there will be days following chemo when you will not feel up for it, and fatigue IS a factor, but in general, we find a way to do the things we enjoy, and in this case, they will be good for you.

Best wishes my friend! Great prognosis, it sounds like!

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

hi as far as mouth care talk to your dentist about making mouth trays for a fluoride treatment. I still do it every night. As far as salivery glanes I all but lost my one side, My onogolist told me there is a good chance that it will come back. I always need to have water with me at all times.As far as walking I had my treatment of chemo in the Hospital a week at a time. I was dehydrated so walking for me would have been out of the question. If you feel good enough to walk go for it.Your body will tell you when to stop.

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