Hello all! I am exactly 6 mos post treatment for SCC of the tonsil and am continuing to have the low saliva and dry mouth. My docs say to give it some time, but I am beginning to wonder if I will ever be able to produce normal, wet saliva again and if I will ever be able to eat regular foods! I am scared! My left parotid salivary gland is the only one that received direct hits from the IMRT. My docs tell me that it is the one which has most likely been killed and that the ones on the other side of my mouth should return to normal but that it will take a long time. Can any of you with similar conditions tell me if it will get better, and if I will ever be able to eat normally again! I am still on the peg tube and want it out! Sorry, but my patience is wearing thin and I am getting depressed just waiting and waiting. Can any of you tell me what I can expect when and if the saliva starts to return to a more normal consistancy?

My husband is almost 5 months out of treatment and he is eating regular foods. He takes Evocax daily which he attributes to helping with the saliva issue. It's still not 100%, however, he's doing really well and there really isn't anything (other than spicy foods)that he can't eat.

I hope things get better for you.

Can you swallow ok? Are you able to take any nutrition orally?

The rule of thumb is that what you have at about 18 months is where you will be forever. A little dry mouth is a small price to pay for being on this side of the grass, and you will likely fare much better in the saliva area than those of us who went through treatment before IMRT. Your new normal will likely have a lot of wet foods in it, but that's not such a bad thing.

007,

I have been there and done that 10 months ago but you are just an infant in the recovery stage. You will continue to see small but steady improvements on all fronts including your saliva. JUST GIVE YOUR BODY TIME to repair the damage done. I have a restaurant patron that had the predesessor radiation Tx just like Brian which was much more devastating to more good issues. He is 11 years post Tx and he still carries a bottle of water on a strap over his shoulder with him wherever he goes. Even with that he eats whatever he wants, says his taste is great and sings in his choir. I remember seeing him eat things I couldn't dream of eating 10 months ago wondering if I would ever be as good as he was. NOW, 10 months later, I'm far better than he is in the dry mouth department.

I am 16 months post Tx and I still see slight improvements to my dry mouth which IS NO WHERE AS BAD AS IT WAS 10 MONTHS AGO.

All our bodies heal differently because none of us receive the same amount of rad to the same exact areas so your body will heal as your body will heal. Don't look to 18 months as some magic date beyond which you won't improve. My RO says he has patients seeing improvements well past that.

I know it's difficult to feel differently when you desperately want things to be as they were but you must give your body the time ti repair as much as it can.

Hi- my husband is two years post treatment and says that he still felt himself struggling with dry mouth about a year after treatment. Things have improved a lot. Recently, the dentist asked him how he was doing with such a dry mouth and said he didn't feel like his mouth was at all dry.

Hang in there, it will get better. I know the first year especially John was really impatient to see improvement but now we're so grateful that he can eat most things.

all the best
Mary

Thanks for your response Margaret! My swallowing was evaluated by a speech therapist and a modified barium test, but I feel like it's not quite normal. Some things get "hung up" in the back of my throat unless I take in teeny tiny portions. I do however drink ensure as a supplement to the peg tube and sometimes eat soups with thin broths. Thanks for asking! Any suggestions will be much appreciated. I'm so glad your husband is doing well!

My husband had that "hung up" feeling for a good month after treatment...even with liquids. There was talk of doing a procedure that would stretch his esophagus.

But, for him, the problem resolved on its own when the radiation swelling went down. Have your docs talked to you about that option? I'm relying on a poor memory during a time I didn't get much sleep, but I think they called it an esophageal stricture. The docs gave me the impression it was a fairly routine procedure and it would help with the eating issue and that feeling of foods and liquids getting "hung up". This was during a time when it took 4 hours to get 8 oz of diluted protein supplements down.

Even though your treatment was on your throat, my husband's was on the base of tongue (in the same general area) so I am guessing your treatments were similar.

I realize you don't feel your swallowing is normal, what did the speech therapist say about your test? I'm really happy you are taking in some of your calories orally. That's important to continue to do.

Aside from the saliva, has your mouth and throat healed from the radiation? Dan still has a rough throat, but that has been very manageable for him.

I just read your treatment plan, you had a whole lot more chemo than my husband. I wonder if that is slowing down your recovery. But, like other's said it takes 18 months to 2 years to get to that new normal, so please don't loose hope!

007,

I just noticed your signature line and I read "suspected cause HPV" ? Have your cells not been tested for HPV?

I would guess since the anatomical location is very typical for a viral cause cancer, and she is a never smoker - non drinker, this can be assumed. Tonsillar cancers were not very common until the days of the virus made them a prime target. They may soon surpass tongue cancers in incidence.

[quote]The rule of thumb is that what you have at about 18 months is where you will be forever. [/quote]

That's exactly what my rad onc told me. Also depends on how many saliva glands got radiated. I still (and always will) carry water wherever I go. Dry mouth is a problem if I have to talk a lot, and foods are somewhat limited; dry stuff like bread, crackers, chips, etc., are nearly impossible and not worth the trouble.

Welcome to the 'new normal'.