I had 35 IMRT treatments in May of 2003. My salivary function has never returned *wish more than anything that the doc would have given me amifostine, when I requested it. My life has dramatically changed, but not because of the cancer....I would much rather have surgery every week compared to realizing my saliva problem every 5 minutes when I'm awake and about every hour when I'm asleep (more when I have a cold).


I've tried acupuncture, salagen *pilocarpine hydrochlordie, and evoxac *cevimeline. I sip water and use a humidifier. I've also tried almost ALL of the over the counter stuff. Apparently this is causing bone problems with my teeth also. WHAT ELSE CAN I TRY???

Hi Destiny, Welcome!

We are all different in how we respond to treatments, I will let you know that even 4 years out I notice differences in saliva output from a year ago. I can't say for sure you will get back any saliva, but I will say hang in there because it is still possible.

I have used Biotene mouthwash to help in the really dry times.

take care

Hi Destiny. I also had IMRT last year about the same time. I did have amofostine administered the first 3 radiation treatments, but my body reacted so badly they wouldn't let me take it again, even though I insisted. The 3rd try I couldn't even make it through the first few minutes of radiation & we had to abort treatment till the next day. My saliva has gone from next to nothing to something since June '04. Like Mark said everybody is different. When I first wake up in the morning, the first thing I have to do is get a drink of water just to get my lips unglued from my teeth! Real strong coffee w/half & half & sugar tastes so good right after that & seem to coat my mouth & throat. Probably not very good for the teeth, but I love it! Keep yer chin up! Erik

Destiny, welcome to the site. I finished my rad/chemo in February, 2004. Still have very little saliva and have water bottle all of the time. Like Eric, first thing in the morning I have a drink of water. Until further notice, I guess its part of my "new normal". Its not a good thing, but a lot better than some of the alternatives. Hang in there. Maybe we'll both be like Mark and have improvement through the 4th. year.

Hi Destiny; I echo the call for patience...although my saliva glands were pretty much blasted to smithereens by the bilateral rads, the mucous membrane in your mouth does start to secrete some lovely dampness after a while. You will notice that you can go for a period of time without a swig and not feel like choking...that is unless you start to talk!
The doc recently put me on a medication that had dry mouth as a side effect...it was surprizing to have it pointed out so clearly just how much moisture had returned (you don't know what you've got 'til it's gone.) I will now wait for these side effects to calm down. Not everyone likes it, but I use a gel called "Oral Balance" by the Biotene manufacturer, especialy at night, and it does give some relief.
All the best to you...you will overcome this,
Fran

Hi Destiny,
As Mark says, everyone reacts differently to radiation and its after effects. I've noticed that if I keep myself well-hydrated by drinking many glasses of water per day, it seems to alleviate some of my dry mouth systems. I've also had some success with using the Biotene mouthwash and then the Oral Balance gel before going to sleep. I also keep a CamelBack water bag on my bedpost so that I can quickly get water during the night. Best, Sheldon

Hi Destiny,

I really feel for you. I finished Oct 2003 and some days my tongue is just a big blob stuck to my mouth. I had the Ethyol about half of my treatment before I had the violent reaction. I have tried Salagen, Evoxac, too, but not much success. It seems like the first thing in the morning I am having to teach my throat how to swallow each and every day. It takes 30 minutes to an hour. I try to spit some days it it just hangs there. I tried chewing gum but it disintegrates into little tiny pieces after a while. I still eat Cheetos and sometimes potatoe chips turn into mashed potatoes. I buy water by the truckload and can go a bit without it. Tonight I had Subway without any water and towards the end it was pretty rough but I did it. I believe it is just life right now and one of those things that reminds me that I am on this side of the ground, enjoying everything coming to life this spring.

My ENT told me to stop drinking coffee as it will only make it worse and after not drinking it for over a year, I enjoy many cups a day.

Ed

Hi Destiny,
I don't know if you read my post on acupuncture, but after quite a bit of research, it is believed that acupuncture can stimulate the salivary gland cells again. Now I don't know how true this is but it may be worth giving it a go.
I think it would be wise though to make sure you are in the clear first. It may be worth your while speaking with a naturopath about this. Good luck.
Caregiver to hubby

Hi Destiny,

I go no where without my bottle of water!!! And I still have almost all function of salivary glands. I have read that after a year or two it may return. It just takes more time than you realize. Try some of the things mentioned above and hang in there. "This to Shall Pass"

I also had IMRT, no teeth removed and no drugs at all.

Best wishes, Danny Boy