Hello, I am 4 and 1/2 months out of treatment -- had unknown primary and one lymph node, neck resection on right side, cisplatin + 30 rounds of IMRT -- finished treatments on 1/11/08. Have little unstimulated saliva, but do well with citric-acid gum to produce saliva; salagen didn't do much, evoxac seems to help with stimulated saliva, but not unstimulated ...

Last week my radiation oncologist told me that should I not see improvements in saliva function at 6 months, there was little chance it would ever get better; she was basing her comment on new results from Mass General. My medical oncologist and surgeon didn't agree -- the surgeon, who performed a submandibular gland transfer on me, told me in fact that improvement really beings at 6 moths.

Am just curious: have others out there heard of the 6 month threshold after which saliva function would not return?

Many thanks,

All best, William

Hey William... I was told to expect function to return out to about 18 months. Not quite there, but it has been slowly getting some better.

Kevin

Usually saliva gets very thick during radiation treatment, almost like phlegm. I was continually coughing, trying to clear it from my mouth and throat. It gradually returned to a more normal consistency a few months after treatment was over. Of course, I have much less saliva now, and sip a lot of water to wet my mouth and to eat. The saliva does return very slowly.

William,

We all seem to recover differently with one exception...and that is WE ALL RECOVER VERY SLOWLY. Do not give up hope after only 4 months. I have been told that I seemed to have recovered fast and I didn't see any improvements in my saliva until my 4th month and I wasn't even satisfied with my saliva until 16 months after my Tx had ended. I have learned one thing during my ordeal and that is most of these doctor EXPERTS are very poor in predicting how any of us recover. If I had only listened to my cancer docs I would have jumped off a bridge thinking that I would never recover. This Board will prove a much better predictor of your recovery future than any doctor you will ever talk to...except the 2 great docs (Jerry and Mike) we have contributing to this site.

William,
I am now 4 years out from treatment, and my saliva is still improving.
I saw nothing until about six months, when I was fitted with partial dentures. It has very gradually improved over the last 4 years. I am no longer completely dependent on the water bottle, but I do need help at mealtime. I am a runner, and I can go out for a 4-miler without a water bottle. I have been able to teach a class, and speak in public without a sip of water every two sentences, so things have improved a great deal since the end of treatment.

Hang in there, it will improve, but as David said, SLOWLY.

Good Health,

Chuck

William, Like Chuck, I am a ways out from treatment (3 years) and I am still noticing improvement in my saliva. In fact, I would say there's been a very noticable improvement just in the last 6 months. I take salagen and I do find it helps--you may not have given it a long enough time. But it tends to give me bursts of saliva for a couple of hours after then I go back to being dry. In the last 6 months, the bursts have actually felt like a little too much--I sometimes almost drool (ick) so now I'm thinking about decreasing the dose I take.

I do have to drink a lot of water when I "eat" and I put that in quotes because most of what I eat are thick soups, yogurt, pastina with sauce and other liquids. Unless the liquid is thin, I have to rinse with water even with soup but that's because I have a lot of small webbed scars in my cheeks from the radiation and I think things kind of get lodged in between the scar tissue.

I WISH I could do serious aerobic exercise without stopping for water or biotene spray but even that is slowly getting better. I used to get so dry that the minute things got aerobic at all my tongue would be sticking to my teeth. Now I can go for a few minutes (between 5 and 10) at a moderately aerobic level before that happens.

There was a poster here, CathyG, who I have not seen lately, but she was 15 or 16 years post-radiation and regularly took salagen and said she was still having improvements in her saliva years and years after.

So have hope--but have patience!

Nelie