Anyone dignosed with tonsil cancer? I have finished 35 rad treaments several months ago but still have lotsa question.

no i had tongue cancer i prayed alot that helped me and my husband ,kids and grandkids r still hanging in there with me i hope after all this u will beable to sit back and take it easy for a bit. i was very sad too i still get that way when i can't talk right sometimes because part of my tongue is gone but it's ok i'm hanging in and u will too .i'm in akron ohio
lynnlynn

Glenda
I was diagnosed and treated for tonsil and neck cancer in 2006. I completed treatments in November 2006 and I am currently in recovery mode.

I am still experiencing side effects from the treatments and looking for some answers as well. But I will attempt to answer any of your questions that I can

joe

i am operating from my wife's page, brendaf. my name is sam. i am not a whiz with a computer. i was diagnosed with tonsil ca but it took them almost a month to find it. a lump in my neck started the ball rolling so to speak. i had 37 radiations and 7 chemos in march/april 05. i was stage 3. they tell me it is different for everyone but i am sure there are more similarities. over and out

Hi Glenda, there's a lot of tonsil cancer patients here including my husband Jack who completed chemoradiation in June. His tumor was caused by the HPV16 virus and is participating in the clinical trial at Johns Hopkins for the vaccine to prevent recurrence.

It took him several months to feel remotely like himself but he feels pretty good at this point. His swallowing got a lot better once he hit the 6 month mark, and he's one of the people who had improvment in dry mouth from acupuncture - it doesn't work for everyone. Are there specific questions you have?

Regards JoAnne

Hi Glenda,

I have tonsil cancer along with soft palate and BOT. Had surgery on 02/13. Starting Chemo/Rad this Wednesday for 7 weeks. If I can be of help, let me know.

Jon

Glenda,

I am a tonsil cancer survivor (3 years). Read below for history.

Please feel free to ask anything. I will be happy to help.

Thanks,
-rh

I had tonsil cancer and I am going through radiation treatments now(33). If I can answer your questions I will and if I can't I bet we can find someone who can.

Jon, I guess we are on the buddy system. I start mine on wed also.

Talbil,

Will send you an email. Maybe we can share our day by day fight.

Jon

Hopefully I will be starting 7 weeks of radiation therapy (with chemo wks 1-4-7) late next week. Had tumour from left tonsil removed 12/14 and left tonsil removed completely 1/29. Firstly I have an exploratory on Monday 3/26 to ascertain jaw movement restriction and interference with tongue nerve.
It is only now as my treatment is nearing that I have learned the art of waiting!

Hi Glenda, I am just getting ready to finish up my radiation treatments on 3-20-07. I recieved 2 cysplatin chemos. I went in Monday for the final chemo but had a fever over the weekend and my counts were to low to do it so my oncologist said we would just take some fluids and finish up the rad treatments. She seemed to be confident that missing the last chemo would not affect my treatment . She said it was fairly commmon for this to happen so close to the end. You are farther out post tx but I will try to help if I can. Good luck to you.

Glenda, I am 6 months out from tx. with the same cancer, if i can help you, please let me know. I post on "After Treatment"

Glenda, you are never alone in this family because there are lots of tonsil cancer survivors here and I am one of them. When I was diagnosed 5 years ago, I never dreamed that I could survive but now I am leading a much brighter life than before. Feel free to ask any questions and I am sure you can get prompt reply and constructive advice.

Karen

Add me to the club. Tonsil cancer with bilateral mets to the cervical nodes. Stage FOUR. Radiation 72 cgy, and neck dissection. PEG tube forever and a day. Now 8 years out. Life is good, even with the side effects from the treatment. Still think too often about it coming back, still have anxiety about things that go bump in the night... such is the life in your future world of survivorship. One day you will post to a newbie here that for you too.... Life is good.

Hello Glenda,
Let me become part of the Tonsil cancer surviors club. I was diagnosed in Sept 2005,Stage 4, had 33IMRT # rounds of Chemo, A modified neck dissection, 4 months of a peg tube and even 39 treatments of HBO.Today Imust say that I feel great, I became a grendpa for the first time just a few weeks ago. Sometimes I feel like I never had this illness. One of the keys to well ness is attitude and approach, it certainly is not everything but it sure does help. You have to convince your self that you have cancer and cancer does not have you. All of the side effects are doable, the Peg tube will come out, your taste will return, your saliva problems and dry mouth will get better, as will swallowing. I have had some side effects such as scar tissue in my ear from radiation along with the removal of lymph nodes that has caused some hearing issues. Just something elese to have to deal with. I have more issues with my diabetes that with cancer. Life is such a great joy today, I rarely get stressed about daily BS, there is more too it than that, like Brian I have those occasional cancer survior anxiety moments but I can only control how I respond to those attacks and generally they pass rather quickly, always remember the glass is half full not half empty. Hang in there my dear friend and reach behind you to help others of the hill on this journey.
Lenny

I concur with Brian and Lenny. I am a tonsil one also, stage III/IV, mets to lymph, 41 removed, 1 malignant, radical neck dissection, radio but no chemo.

I just passed the 3 year post treatment test (Ides of March, 15/3/2007), and of course had all of the pre-examination jitters, nightmares, thinking again about pre-booking my funeral and so forth - ask my hubby, he'll confirm that I was a pain in the proverbials prior to the 'nose-scope'!

Life is good, and saliva does return (I didn't have IMRT). I love eating, even though it still takes time, longer that I'd like!

Going through this episode was a piece of cake compared to what could happen. Actually, I have forgotten (?), put aside most that occurred. It was my first operation, at the age of 47. Just a bad dream that happened to me, and life goes on Think poz!

Cheers!

Tizz

Glenda,

Add me to the list! I am almost 3 years out from the end of treatment (June 3, 2004) for Tonsillar SCC, stage IV. I had a modified neck dissection, 35 IMRT and 7 chemo treatments. Even with a PEG inserted before tx began, I lost 45 pounds (185 to 140), endured terrible mucositis, required infusion therapy for weeks after treatment, etc. It was quite a battle.

However, echoing what Lenny said, I believe it's absolutely about your attitude and approach to the treatment. At the time of my dx, I was 50 years, healthy,worked out regularly and life was great. I didn't "feel" the least bit sick and, frankly, I just got mad and went into tx as a war - me against the disease. Before beginning treatment, I armed myself with as much knowledge as possible about what I could expect in the way of pain and side effects as my treatment progressed. Learning what was ahead, I immediately increased my exercise routines and began daily meditation to get my body and mind as strong as possible for the battle. During the entire tx, I never hesitated to ask my doctors, nurses or rad-techs questions about how or what I was feeling. After all, it was my body going through this! Fortunately,from the start, none of these providers pulled any punches with me about how bad things would get. Consequently, when the side effects appeared, I was ready. Was it horrible and disgusting? Sure, but it wasn't a surprise and I knew I could do it.

My salivary function began to return about 6 months after tx and with it, my taste came back as well. I slowly began exercising again after my PEG was removed (about 3-4 weeks after tx). Included in the lost 45 pounds was just about every ounce of muscle on my body. Needless to say, I got some very interesting looks when I first returned to the gym. It was a slow go, but I'm now stronger than ever and have gained back 35 of those pounds - I needed to lose about 10 pounds anyway! In many ways, I believe I'm a much improved person and enjoy life more fully.

Think positive, maintain a sense of humor and don't ever be afraid to ask for help or support.
Peace.

It seems that Glenda has not read our posts or maybe he/she(?) has chosen to remain silent. I do envy those members here when they said their dry mouth has improved because for me, the saliva glands have never returned to life. Another side effect that has worsened recently is my left hand and fingers have become more numb than before and I always type the wrong letters on the keyboard... sigh!!It's so frustrating sometimes. Another price I have to pay in exchange of my precious life.

Karen

Hi Glenda you will find lots of answers to many of your questions and worries throughout this forum. I am 50, tumour in right tonsil, 2nd mets into lymph (2 nodes Stg 2 and 1 Node Stg 3) and 18months post radical neck surgery, 38 rad treatments and 3 sessions of concurrent Chemo (Cysplatin). Lost muscle and access nerve to one side. With a number of adaptations life has improved considerably over the past year. Lost a lot of wt 70lbs and now back up 50 to 180. Whatever it trakes try to keep the wt up. PEG, supplements, high energy foods Have a party as often as you can !!!. For me - taste back 80% Salivia back 60%. Lots of products to help you through ther day with salivia. Chewing gum, Biotene Gels, Mouth Kote, water bottle. Sleep was a huge problem and now with a combination of humidifier and homeopathy sourced orabasegel with herbs I am getting 3-4 hr runs. Heaven!!. Back in the gym now building the neck and shoulder.The early recovery days seemed lke an eternity but it will come right. Believe me!!!