Gordon's mouth is dry most of the time, and we know about the various products that can be used to help alleviate some of the dryness.
What he would like to know is - how long did it take for people here to get some saliva production back, and roughly what percentage of the old "normal" did you get back?
We've had different answers from the doctors, but really, patients are better equipped to answer this question.
We know at the end of 2 years, his saliva and taste will be as good as they're ever going to get.
Many thanks, Anne

Anne,

I still have reduced saliva production after more than 4 years post TX. Mine comes and goes during the day to where I have little problem. It goes dry when I get stressed over something most commonly. The big problem for me is at night while asleep. I wake up a couple of times during the night and my mouth will be totally dry to where I almost have to pry my tongue loose from the roof of my mouth. I keep water and a couple of different Biotene products next to the bed that I will use when getting back to bed. At least that lasts long enough for me to get back to sleep. There has been no change whatsoever for me for over 2 years now and I suspect it's as good as it will ever be.

Bill D.

I completed my Tx 4 years ago, see below. My saliva and taste seemed to return together and in spurts. I noticed my first improvement at 4 months post Tx and then again at 5 months. These were small improvements but welcomed as my RO's nurse had told me I would be fully recovered in 2 months time. Seriously she told me that. I really didn't notice any more improvement until my 15th month and that was my biggest change. I then noticed another slight improvement at 24 months and nothing since. I would guess that I'm about 90 to 95% back to normal.

My saliva has returned part time and I still have the dry mouth a lot. My mouth at times just pours saliva out and at others I need plenty of water or Biotene for a boost. I think at times, this slobbering is embarassing when in public with a handerchef in hand. Heck with the public tho as long as I am alive.

Elaine, the amount of salivia people get back is influenced by where their tumor was and what the radiation was focused on. I had my right side spared and would rate it at 90% of my old salivia output. My salivia started to return after about 3 months post radiation. Best wishes to your husband for a quick recovery

I had a turning point at about four months. It was so subtle, all I really noticed is that I could eat a little bit better. I no longer had to take a drink of water to get every bite down. Since then, it has slowly (and I mean slowly) been improving. I have found it helps a lot to chew gum. Specifically, I get Spry gum from my dentist's office and when I'm chewing it I can almost remember what it was like before head and neck cancer treatment.

Anne, my experience has been similar to Sharon's, I'd say. Now I'm at about David's 15 months post-RT, and while the saliva is certainly a great deal better than it was, say, a year ago, it still has a long way to go. Naturally I realize it well might not improve any more. I can handle food as long as I drink water, and try to eat things that are moist. To hazard a guess I'd say I'm... hmm... 60-70% of pre-RT.

D2

I am six month's post treatment & still have great difficulty with dry mouth! My oncologist mentioned to me that it may never come back.However, I just carry my bottle with me wherever, & try not to dwell on it. Eating is much better even though I need to chase everything down with liquid. It will be a bonus if it return's even just a bit!

I am almost 16 months post treatment. My saliva has definitely gotten better over the last 4 months. I can lick one envelope (but not two) which was totally out of the question for the first year. I can carry on a conversation of more that 5 words before reaching for the water bottle. And for me, the greatest change is the fact that I have grown accustom to this. I CAN LIVE WITH THIS. I can carry this water bottle everywhere. I can talk with clients and stop to sip water without feeling self conscious It isn't really a big deal. So, I guess what I am saying is - it does get better, but also - we come to a quiet acceptance of this new normal. Good luck on the journey.

At two years, dry mouth isn't an issue.

I hate to say I'm back to normal because rarely I will wake up with dry mouth and the saliva might not start immediately flowing; but, most the time I can slobber and spit as well as I ever could (which is a lot!).

Thank you all for your comments. I have emailed some to Gordon, as he will read things I send him (but won't come to the Forum himself), and hopefully he'll feel encouraged.

He's now carrying the water bottle with him everywhere (even to restaurants) and can now eat Japanese and Greek food, selectively, with water to wash it down. It's a big step forward! Tempura and kalimari are big hits (relatively speaking) right now. I think it's the batter.

I'd be happy to hear from anyone else on this topic, and thanks again.
Anne

It is likely that it will never return to what it once was. As the saying goes...he will have a "new normal". Everyone recovers differently, based on their treatment plan and dose of radiation. I learned that saliva has two parts. The viscous part and the cirrus part. My rad doc said that the radiation usually destroys the cirrus (watery) producing salivary glands. That is why most of us oral cancer patients are only left with the viscous (thick) saliva, if we are lucky to have any at all. It takes a long time to adapt...just trying different things and ways of eating. For instance, I cannot swallow anything thicker than my saliva without drinking a liquid to wash it down. In fact, my doctor told me the truth. He said..."you will never be able to eat the way you used to eat". When he said that, I knew he was being honest. I am now three years post treatments and can eat most things, but not everything that I did before and not with the ease that I did before the cancer. Good luck to you and tell Gordon to hang in there because it DOES get better.

I went almost 2 years with ~70% pre rad saliva. It was low enough to where eating with a fluid was my only option. A friend took me to an Acupuncturist. I know, I know this stuff sounds hokey cause I was a skeptic. The nice lady hit 2 spots on my right ankle and foot and woosh - saliva. My saliva has maintained about 85 - 90% ever since, even through my second round of radiation. This only took one visit. I was able to eat without drinking until my throat closed down and stopped moving. I still have saliva to my doctors surprise. I wish your man the best with his recovery.

I am about 14 months post treatment and have about 75 percent back now, it has been improving the more I eat. My neighbor is about 4 months ahead of me and he is doing pretty good now also. he also carries a water bottle everywhere he goes I don't as I have never been a big water drinker and at my age the more I drink during the day the less sleep I end up getting, guess that is what they mean by the "Golden Years" . My taste buds haven't improved as much which is my major problem as my hobby is cooking and it is hard for me to tell if something tastes good or not. Still having problems with anything sweet ie cake candy, cookies and ice cream tastes terrible.