I want to have hope, but am beginning to lose it...I am wondering if I should just face the possibility that my mouth will always be dry and that what little saliva I DO have will always be sticky. There are no posts on here that state anyone's saliva has returned to pre treatment form. No one has stated that their saliva has a wet/watery consistency like it did before treatments. Are we all just holding onto false hope? If I've missed someone's post stating that their saliva is like or almost like pre treatment, please respond and let me know about your situation. And anyone who has just accepted the possibility that their mouth will always be dry, please let me know HOW you have accepted it. This the the main thing with which I am having difficulty.

007
well for what it is worth I do not have sticky saliva. What saliva I have is really watery (parotid glands are more or less ok). But I also have at times a dry mouth because the saliva does not coat things very well... And no!! I have not given up the hope for further improvements. I still notice changes with taste and things I can tolerate. Just as of this week I can tolerate dessert wine! (it is a different story whether I should drink this or if that particular selection is even desirable!!). Also tolerate means that I can drink a sip it does not mean that it tastes particularly good. From what I gather it takes more than a year to reach the endpoint of the recovery.

Have you tried exovac? I used this for a while and it seemed to help but you have to be careful with the dosage. Otherwise you end up coated in sweat. Also a humidifier helps during the night.

markus

I really feel your frustration that comes through your post. I don't have a great answer to give - just that I finished radiation right around the same time you did and still have a very dry mouth. I have just learned to deal with it. My saliva isn't as sticky as it was during and immediately after radiation - but it is still thick, still sticky. I do have some wet saliva, but definitely no where near adequate or what it used to be pre-treatment.

Here's what I do to cope: I threw away all of the Biotene products after getting so frustrated that nothing seemed to help. I actually felt better once I said "to heck with this stuff" and moved past trying to get relief from them. I never try to eat anything without water or a warm beverage (I've found that drinking warm coffee/tea while I'm eating warm food works better than drinking cold water with it). The times I have tried have been miserable and unsuccessful to put it mildly! I use a ton of Burt's Bees lip balm because my lips are always dry and I don't have saliva (or much of a tongue!) to wet my lips with. I always have a bottle of water with me when I'm planning to talk a lot (I teach health and safety courses, so I'm frequently talking a lot!) and I take frequent small sips.

As for bed - the time of day I dread - I used to keep water by my bedside, but have since given that up. Like the Biotene - once I finally said "this just doesn't work for me" and stopped trying to take a sip of water that would moisten my mouth for 6.4 seconds before it became a barren wasteland again - I learned how to just deal. I have learned that - and I know this sounds weird - but there you have it! - that if I stick my finger in my mouth in the middle of the night and run it across my teeth, I produce some small amount of saliva and my mouth feels a bit better. I barely wake up and can go right back to sleep. In contrast, when I was sipping water all night long I had to wake all the way up to unscrew the bottle cap, sit up in bed, take a sip of water, work on swallowing it, putting the bottle cap back on, and then tried desperately to get back to sleep. That was really disturbing my sleep patterns!

When I get up in the morning, the first thing I do is take care of my oral hygiene, then I go get a huge cup of warm tea. It does take a while before I am lubricated enough to be able to talk, but my family now knows not to bug me until I can talk. I let the phone ring if I'm not ready to talk and I never schedule very early morning classes. That's just the way it is.

I don't know if my quirks will help you or not - but I really wanted to answer.

007,

I was not satisfied with my saliva until I was 16 months post and that would put you around Nov 2008 so don't even think about giving up yet. If I try to think back to how I was at 9 months post I know it was nothing like what I was at 16 months.

I agree with David. Dan's saliva is doing remarkably well, but every week/month he is able to eat and enjoy more and swallow with less water at hand. He still needs to have a beverage handy at every meal, but he doesn't need it for every bite. Dan's been on Evoxac since September and it seems to work very well for him. If you are struggling, you might want to consider giving it a try.

[quote=x28007]I want to have hope, but am beginning to lose it... [/quote]

OK Girl.. deep breath here!

I do not think you're going to find may of us that have all of their spit back to pre-treatment levels. Frustrating, yes, frustrating as hell, but just like your treatments dont give up, adapt, adjust, experiment and find something that helps. For some reason I have had to start using the thicker Biotene Gel again at night but at the same time I am beginning to be able to eat pepper (Tony Chacharies to be specific) again. A major positive milestone for me, this from the kid that used to used Tabasco like ketchup.

I was told not to expect to much until at least 18 months post. I'm quickly getting there and I do notice some subtle changes.

Hang in there !!!


Kevin

I finished treatment a month before you did. Mine was pretty sticky but lately its improving. The other night I made brownies and had to substitute almond extract for vanilla extract and it got my salivary gladn pumping-- or maybe I just turned the corner. Mine is improving each month slightly along with the sensitivity in my mouth. Spice/ acidity was so so painful but now its getting lots better. Stil can't have thai food much un;ess its not too spicy pad thai but its getting there.

I understand your frustration. I have a whole ritual at night with the teeth to preotect them-- Its a hassle but just a part of life for me now.

I heard of one who did get his glands back, but it took two years after his last treatment. I am sure it depends on the amout of radiation given to the gland in the first place.

Hi there, evoxac worked great for me; I took it for 1 yr 3 mos after treatment ended. So I just stopped last month. Don't give up yet, okay? My mouth is almost completely back to normal--a teeny bit drier now and then, but not usually. And I can eat almost all spicy foods again, too. If you're not using evoxac, please ask your doctor for an rx. Really made a HUGE difference for me!
Good luck!

I had sticky saliva for a long time but I really don't at all anymore. What saliva I have is pretty much a normal consistency but it is mainly coming from my right parotid gland - I boost what I get from that by taking salagen which I think I'll probably need to take for life (but so far no side effects from it).

Right after I take the salagen, sometimes I have too much saliva, then it tapers off and later my mouth gets dry. My mouth gets very painfully dry at night and I can't talk in the morning until I rinse my mouth with biotene and brush my teeth enough to get some moisture (when I wake up my lips stick to my teeth and my tongie sticks to the roof of my mouth-ouch).

So that's the good and the bad news. I have heard stories of people getting even more salivary function back years down the road after treatment but I'm not counting on that.

Nelie