has anyone experienced declining saliva (and increasing trismus) after radiation (I'm nearly 2 years after full mouth radiation). most people indicate improvement further out from radiation.

My saliva had an initial period of no change, then some improvement, then a slight worsening. I attribute it to the fact that as time goes by, I have not necessarily kept up with the same level of water consumption as I did during treatment and immediately afterward, and drink more different things, including things that dry up saliva (coffee the primary offender). Same with food -- diet is more varied now, including things that dry out my mouth. I need to be more diligent on this.

I agree on the trismus --- while I probably do not have "trismus" per se, I do have considerable jaw tightness, which can become pretty good pain and spasm, especially when yawning. This has worsened, as has my neck/shoulder stiffness and discomfort.

Not fun, but beats the hell out of the alternative. I am going to start physical therapy for neck/shoulder, and I will just try not to yawn. ;-) Insofar as dry mouth is concerned, I have stepped up my Biotene, and need to actually take my Salagen as prescribed, not when I remember.

I'm not too far behind JeffL for with my surgeries and all. My mouth is still very dry and it seems if I don't carry water and biotene, My mouth gets as dry as the sahara.

Jim04,

I believe Gary and or Brian have warned us newbies that sometimes the saliva does get worse after several years but I can't find the post. Maybe they will comment again.

Actually, I can't think of anyone who has said their saliva has gotten worse further out. Though it makes sense that if you stop taking salagen regularly and drink less water it would seem that way. Usually people talk about it improving even when they are several years out sometimes.

Trismus, though,definitely can get worse even several years out. Escpeially if you stop doing the stretching exercises, and same with muscle cramping.

Radiation is truly the gift that keeps on giving!

Nelie,

Maybe it was the Trismus, which would make more sense as you say, they mentioned but the post, I believe by Gary, stuck with me and I really thought he was warning us not to feel to comfortable with our saliva recovery as it could get worse years out.

I am still doing same - my stretches with the therabite (ouch) and taking evoxac (2 times/day - interesting most people take salogen instead), trental. pain (later) after talking much, after eating and brushing. not intolerable still making it.

Maybe I finally got lucky with everything Ive gone thru. I stopped needing to carry a water bottle at about 6 months post treatment. Now Im 9 months post treatment (from chemo and radiation from my 1st round of OC) and have about 80% saliva without taking meds to stimulate saliva. Everybody is different really is very true when it comes to how people heal from this awful disease.

Christine

Christine,

That's remarkable that after only 6 months post Tx that you were able to leave the water at home. I was well over a year before I dared do that. Yes we all do recover at our own pace.

Hi I am 8 months finished with my treatments and still no saliva. Chronic drymouth is a norm in my life. I work with the public and out in the weather with its dryness. I carry a water bottle with me at all times. HAve to. Keep waiting but not stessing for the norma to return but am happy to be here.