I was stunned today when I saw my Head & Neck surgeon and he informed me that ny right parotid gland shows normal salivary output. Ir was supposed to have been completely destroyed, as it was directly in the beam path. I have had fairly decent salivary output for some time and just assumed that the other 2 glands were taking up the slack. It was a good 1 1/2 years until any of them started functioning again post Tx. I'm on the once a year followup plan now and I am fast approaching my 6 tear anniversary. In the words of Jerry Garcia, "what a long strange trip it's been".

Wow Gary, 6 years out and perhaps still recovering. That's great news for all of us wannabees and maybe we need to revise that recovery rule of thumb we throw around here? One year for each week of Tx might closer represent reality.

I'm happy that someone can make saliva. LOL If a little spit would put out a fire, I would make it burn hotter. LOL My Saliva is history . Was told to get used to it if that is possible.

I'm 2.5 yrs out from my first IMRT which was directly to the mouth/tongue and my saliva is actually decent these days. I still wake up feeling like my mouth is a dry lakebed but it gets going during the day. I'm not even sure when it happened, I've just noticed recently that it's not too bad these days. My second round of Rad was in summer 07 but it was only to the neck, nothing towards the mouth.
I still have taste issues (sweets taste terrible) but that's another story....

Great news Gary

I'm sure that careful programming and IMRT played a big role in this, and also the remarkable resiliency of the human body. My CCC also has done extensive clinical trials on salivary function preservation, utilizing IMRT, so I am sure that I benefited from that as well. It was a major consideration when I was choosing which CCC fot RT The right parotid may have recovered sooner, I never really thought to have it checked until yesterday and it was just out of a curious thought that entered my mind during the exam.

XRT is another story but there have been a few here that also had some salivary function return after a number of years.

I still wake up with dry mouth sometimes but it is almost always when I have had heavily salt laden foods like pizza for dinner. Alcohol use will desicate your mouth as well, that's another reason why we don't advise alcohol consumption or AC mouthwashes, in addition to the obvious risk factors, especially in early post Tx.

Balancing this out some doctors had advised their patients that an occasional alcoholic beverage is not a significant risk. Like A glass of wine or beer with dinner (read - don't polish the bottle).

It takes a lot of time and patience to get salivary function and taste back.

Meticulous dental hygiene is absolutely imperative during the dry mouth time and actually for life (although I have to admit I don't do daily flouride treatments anymore).

Great new Gary! I was going to ask you about the use of fluoride trays--but you answered my question.

Do you think using fluoride trays every other day would be sufficient? Do you think using scripted fluoride toothpaste would be in place of the tray method?

Talk about baby steps...This should give everybody hope.

I used a pH neutral prescription flouride foam that I got from the dentist. 0.9% strength. It is a 5 minute application. I don't know that they make flouride toothpaste in that strength but Jerry may be better able to answer that. In office, the flouride concentration was 1.8%. They use a different method now, they "paint" the stuff on. and it just wears off. I like using the trays better but they claim this is the latest technology.

Talk to your dentist about frequency. The manufacturers instructions were for 6 month intervals! But that doesn't reflect persons with dry mouth conditions.

Gary,

So I'm curious. How did they test your paratid function?

I'm one of the ones who had XRT and never totally lost my saliva function despite having had right submandible gland removed as part of the neck dissection. I don't walk around with a water bottle and never did. My saliva is thicker than it was prior to treatment, but better than nothing. However, all these years later, I am now noticing that when I wake up in the morning, it is getting thick and white almost like that awful stuff we gagged on at the end of radiation. I think this means my remaining submandible gland is not working as well as it did since they are the ones I think produce the thin stuff. Would be nice to know why this is happening after all these years. Doctor just shrugs.

Take care,
Eileen

They test it by squeezing the outlet of the gland and observing salivary output. It it located in a hard to reach place above the 2nd from the last upper molars. Drops of saliva will flow out. You'll need a mirror and flashlight.

I have a lot more phlegm than I had pre Tx in the AM but others I have spoken with about this say it is (part of the new) normal.