Need Info?

I was diagnosed with tonsil cancer on July 31, 2006.  Since then I went through 7 weeks of radiation therapy for 20 minutes Monday -Friday.  I also went through 7 weeks of chemo twice a week.  I am so thrilled to report that as of my PET scan performed on Jan. 9th, there is no signs of cancer!!!  THANK GOD!!   My last treatment was on Oct. 16th and I have been recuperating from the horrible damage the radiation did to my throat and mouth.  As of today, Jan. 18th I am still battling painful mouth and throat sores and my salivary glands and taste buds aren't working.  The doctors tell me this is normal and that my taste buds and salivary glands may take up to a year to start functioning again. Does anyone out there have any info on how long it took for them or someone they know with tonsil cancer to recover from the sores and how long it took to get the salivary glands and taste buds back?  I would appreciate any info and ideas to deal with the horrible dry mouth.

 

 

I was diagnosed with left tonsil that spread to my lymph nodes and completed my 37 rad and 3 chemo treatments 8-29-2005.  I am 52, a non-smoking social drinker, and in very good health.  My silava is at about 90% of what it was, and my taste is back to 100%.  Mouth soars went away fairly quickly.  My doctors at Mt Sinai in NYC had me on 150mg of zinc (taste buds) and L-Glutamine for my salivary glands.  I was also taking a drink supplement called Living Fuel and added to it vit c powder, cod liver oil, and took a coq10 (200mg) supplement.  My recovery was quick and I was preparing for a marathon within one year.  Good luck in your recovery.  All my best.

Rob J.

I finished my treatment December 23, 2005 for stage 4 SCC right tonsil/lymphnodes. Petscan showed all clear a couple weeks ago. My saliva is about 20% back, but I`m pretty use to the dry mouth. I do have to take water to bed at night. I still have some pain occasionally in my neck, jaw and shoulder. My mouth is still a little sore and my tongue feels warm. I also get a warm feeling in my ear. These are all things I have gotten fairly use to. My big problem is that I have very little taste yet and it makes me very irritable. I get a little taste from heavily sugared items only. I have not had meat or any salty items in over a year and I miss it. My doctor says in rare cases people never get their taste back. I can`t accept that. I do take a multivitamin daily. Do any of you think adding more zinc for awhile might help the no taste issue? By the way I took Carboplatin and Taxol chemo and 35 radiations (29 mins.)............all this, but I AM ALIVE!!

 Ron

I had cancer of the left tonsil and it had spread to lymph nodes same side. May 5, 2005 had both tonsils removed. 36 radiation treatment and 6 months of chemo. I have about 30% loss of syliva glands and taste buds are up to about 50% but blinks out to zero at times. The pain in mouth, tongue and ears still present, but seems to still be healing little by little. So I still have hope that it will get better. I drink bottled water and keep it with me at all times. I was getting pains in my leggs and found out to much water can cause it. So sometime I drink gatoraide. You get use to it after awhile. Live a lot on the memory of the taste of food. Food smells good and the softer the better - lots of potatoes and gravy and soft veggies. Yogart is good. I brush teeth several times a day and floss. Keep mouth as clean as possible is the best advice I can give and keep positive out look. My ears ring alot and hurt. The chemo caused nerve damage in my face, hands, arms, leggs and feet. Chemical Oncologist gave me amitriptoline an antidepressent for the nerve damage and it helps me sleep. I work full time and am 52 years old. My husband died last year and I feel guilty cause I thought it would be me, but he had a heart attack and I miss him badly. He was my rock and now it is just me and his big old smelly dog (Dakota). He is a Rottweiler who is 11 years old and I love him. I would give anything to have my Darwin back, I would even trade places with him if I could. Don't get me wrong I don't want to die, I just that I am not as scared of it as I use to be.

I lost 55lbs during the radiation and chemo and was at about 95lbs when I completed the chemo. I am 5'7" and now am back upto 120lb. I lost all my hair and when it came back it was curly. I didn't use a feeding tube, because I was afraid of not being able to eat, if I stopped swollowing - I numbed my throat and mouth and drank liquid supplement drinks. It was about 6 months before I could really start eating enough with out the supplments. I wished I had known about the nerve damage from the chemo, because I would of stopped the last set of treatments when I started to loss feeling. I have had clear Pat scans for two years now, but am always afraid that the cancer may come back. I just don't want to go thru the rad. and chemo again. I just try to be happy and be kind to other people. I know now that life is too short and there are enough hard times with out causing them. I was a smoker but not a drinker. I think stress plays a big part in causing changes in your body that contribute to cancer. I know I am rambling and my spelling stinks, but I just wanted to let people know I'm still here even though the tonsil cancer had spread to my lymph nodes. My radiation Oncolgist said it was a large mass and he gave me the highest dose if radiation that he had given to anyone. He said 10 years ago there wouldn't have been any hope, and that I almost died. I was in the hospital 3 times for transfusions during the chemo. the doctor said that since I made it 2 yrs I should expect to be around 10 year or more before the odds start going up again (due to secondary cancers from the radiation). The biggest point that he made is that we are making history, because we are surviving longer. The long term side effects from the treatments are not as well documented and so these messsage boards are one way that we can document info that may be found any where else. Hopfully my rambling will give someone hope.