Hello,
My name is Al, I am 44 years old and was diagnosed with tonsil cancer June 2005. I initially found a lump on my right side of my neck, had a ultrasound, then needle biopsy, then cat scan, then received the overwhelming news I had cancer of the tonsils, back of my tongue and the lymph nodes in my neck. The next step was the insertation of a peg tube. After that, I had 35 treatments of chemotherapy and radiation(every week day for 7 weeks).
I lost my saliva and taste buds after a week of treatment and no improvement so far...6 months later. Two months after my treatment, I had a cat scan and it showed the primary cancer in the tonsil/back of tongue was gone but showed one small spot on my lymph node, together with my radiologist(who is wonderful!) and my surgeon, we decided to proceed with the surgery to ensure all the cancer was gone. I am still recovering from the treatment and surgery and get a little better each day, I am just very frustrated with the dryness in my mouth and not being able to taste...I would really like some feedback/suggestions. Also, my doctor has prescribed Salagen but have seen on this website that some people have Amfistone, would like some feedback on both these drugs if possible.
Looking forward to some suggestions!
Al

Hi Al, I have been taking salagen for about 2 1/2 months, when I first take it, I seem to have a saliva splurge so to speak.....then I get dry again. I talked with my doc about it and he said I can increase to two pills 3 times a day if I want. Sorry that is about all I can offer. Hoping you have better luck....Carol

Al, first let me offer congratulations on making it through treatment. That is a Big Deal! Amifostine (sp?) is given in conjunction with rad, not after. If you had IMRT rad, you may eventually recover some of your salivary function. I did, but it took quite a while. Hang in there, it gets better and better.

Hi Al --

Amifostine has to be given during the radiation treatment period -- as it acts to protect the salivary glands from the radiation -- it is given about 30 minutes before each treatment, by injection. It works but is a very difficult drug to tolerate and many cannot handle its side effects.

Our dental onc and also our ENT both are prescribing Evoxac now (not Salagen) feeling it is a more effective drug with fewer adverse side-effects, like sweating. Myabe ask your doctor about it.

Gail

Al,

I didn't have either Amifostine or IMRT (they weren't available when I was treated 17 years ago), so I had conventional radiation and had major dry mouth problems afterward.

I've been using Salagen regularly (5mg 3x daily) for about 15+ years. In the early stages I had a "saliva surge" like Carol described and then it would wear off for awhile until the next dose. After some trial and error I found that it was somewhat better if I took it at the end of a meal (rather than on an empty stomach) -- that seemed to spread the effects a bit more over time. As more time has passed since my treatment, I've added the Biotene mouthwash/gel/spray products to my routine, and my salivary function has come back more than I expected, given that I didn't have any of the preventive measures that tend to be used now.

I know the healing process can be slow and frustrating, but hang in there -- it does get better.

Cathy

Al
I still don't have SPIT. The VA supplies a Product simply called "Artificial Saliva" I mix it 50/50 with biotene mouth wash in a small refillable spray bottle (Pump Type). I keep this with me 24/7. My ENT's and Dentist's agree that I will probably never get my SPIT back.
Taste, some but not much... I cannot taste sweets.
Darrell

Hi Al,

I have tried Salagen (didn't work) and had some success with Evoxac. I'm currenty a year plus one month out of treatment and doing well. It takes some time for things to return.

OTC solutions were marginal at best. This week some new products are coming out. They should be available by the first of February. Numoisyn Liquid and Numoisyn Lozenges. The liquid is an artificial saliva and the lozenges stimulate saliva production. They have no side effects and should help you. Your ENT or Rad Oncologist should here about them soon.

Steve

Hi Al, Salagen helped me for a few months but seemed to lose its effect over time. I stopped taking it and noticed no changes. Perhaps I regained enough saliva through healing. I too have lost taste and smell, though they do seem to be slowly creeping back. I am two+ years out of treatment and every day I get a tiny amount more back. Be sure you eat whether you can taste or not. Its suprisingly easy to ignore food when you can't taste!! Congrats on completing treatment - another battle with the beast goes to the good guys! Be strong. Tom

Hi Al,
Like Carol, these newer drugs didn't exist when I had radiation. Also no IMRT as was an unknown primary. No chemo. I took Salagen for about 2 1/2 years after radiation and it helped a lot with dry mouth. The one side effect is perspiring for about 15 minutes shortly after you take it. I also use Biotene toothpaste. I stopped using Salagen after one very hot, 100 degree humid 99% day, in which i as perspiring so badly I couldn't see (no air conditioning). Since i didn't lose my saliva when I stopped taking it, I never went back to using it again.

I'd give it a try if I were you. I think they say you can take up to 6 pills a day. I took 3. This is also a drug you are suppsoed to start taking during radiation to help you maintain your salivary function, but you continue to take it afterward. Hope it helps you.

Take care,
Eileen