Hello All,

My name is Jack. I was diagnosed with squamous cell carcinoma in Sept 2009, started radiation on Oct 1, ended Nov 23. Still no saliva and taste is weird, but the tumor is gone. Is there anyone who can tell me one way or the other if I will ever get saliva glands back? I'm very confused by what I've read.

Hey Jack.

I'm just ahead of you. Getting my taste back and the saliva loss was not that bad for me but i still take water with me when I go out.

Some here talk about saliva improving as much as two years out. From what I hear at this site from the old pro's, those of us out here at 6 and 7 months can expect a good deal more improvement to come.

Jack,

We all can recovery differently since we are not all the same to begin with and there are many other variables that affect our level of recovery especially the field and intensity of radiation during Tx. I received 72 gys and it was dispersed to both sides of my neck and all throughout my oral cavity. I had horrible dry mouth at first, couldn't walk 10 feet without having a water bottle handy. Kept one in every room of my house. Even kept spare bottles in both cars as I was ALWAYS leaving a bottle at the checkout counter!! Anyway I notice my first improvement 4 months post, then another at 5, 15 (my biggest) and at 24 months post. Each time my saliva improved so did my taste. I estimate I'm around 90 to 95% back to pre Tx and that small difference is really nothing to write home about as they say. Good luck and just be patient as there's really nothing that you can do to speed up the recovery. At least none that any of us know about.

Hi Jack, It will be 2 years 6/20 post treatment. My mouth gets very dry. I must have water w/me 24/7. It is really a problem when you get stuffed up & can't breath thru your nose! (like gardening:alergy's, cold or crying) So I try not to clean (dust) or garden, get sick or cry! However 2 weeks ago, I was able to eat a choc. ice cream cone. Last year chocolate tasted horrible and I could not swallow the dry cone. So there is a very s l o w improvement!

Jack,

Just as Dianne points out we will all recover as much as we will when we do so just go with the flow and see where you end up.

Dianne,

Just read your signature line all the way to the end for the first time and I love your "in quotes".

Welcome Jack!

I'm a few months ahead of you and I will say the saliva is getting better as well as the taste buds. Before alot tasted like plastic to me but now things are starting to taste normal again. I get dry mouth first thing in the morning, when I'm real active, talking too much and a weird one...when I'm using my peg feeding but it is all getting better. Just give it some more time and be patient.....a hard concept for me!LOL

I won't lie. I am 3 years out and have a taste for the 1st bite then it could be cardboard and I wouldn't know except I couldn't eat it. My saliva is trying to make a comeback unless I get a little winded then I am as dry as desert sand .

Saliva can take a while to get back to near normal. There are meds to take that can help. As far as taste goes, that can take up to 2 years to get back close to normal.

Thank you for the info..I really appreciate it. Jack

Thanks to all for the very good info..it's starting to make sense now, just wish this cancer made sense...;-(. I do feel very lucky after reading some of the horror stories here, it has helped me immensely. Thank you again....Jack, Semper Fi!

Jack,

You have presented the "million dollar" questions as I call it. I am just about 4 years out and can only give my personal account. In my case, it was some 2 to 3 years until my taste buds returned to what I estimate to be 90% normal and still there today. I suspect they have recovered all that they are going to by now. I eventually just learned to accept the fact that this is the way things taste now and I guess I adapted. Actually, I have found, in my case at least, the saliva issue is more of a pain. For the most part, I make it through the day in a near normal state but it seems that there are certain situations that will trigger dryness such as stress for one. By far, the greatest problem is at night while asleep in bed. For whatever the reason, my mouth goes as dry as cotton throughout the night, even with the use of a vaporizer in the room. What is really strange is that if I get up in the night, within a minute or so of standing up, the saliva begins to return. I can't figure that one out to save my life.

Good luck and just take it a day at a time.

Bill Dozier

Hi Bill,

Thank you for the info. I too have big problems sleeping, cotton mouth big time, sleep in 1 to 2 hr patches. At least I think I have something to look forward to with the taste buds and saliva. Still blows my mind how we take saliva for granted and what a huge role it plays. Thanks again, Jack

Jack

With less than a year since your TX, you will notice improvements in your saliva & taste. Everybody varies, but it took me one full year before I could do anything or go anywhere without a bottle of water. Luckily my wife sewed me a great water bottle holster with my old Marine Corps Marathon patches that I wore from wakeup to bedtime. At the end of the year I even took a trip to Italy and could taste the pasta/ wine/etc
All memories now, but at least I no longer have any dry mouth at all. Hang in there. It takes longer than you think at first, but things do get better and better
Charm

Hi again,

Wanted to ask if anyone has tried pilocarpine. I tried it for about 3 months then gave up, didn't help at all except give me sweats. My dry mouth really gives me the fits but it's a small price to pay. Every day I consider myself truly lucky to have beaten this horrible disease so far. Taking it one day at a time.

Jack, sorry to see you here but sounds as if you have the right attitude. Yes, bottom line is that we're all grateful that medical science has advanced to the point where they can treat and help us beat this sucker.

I'm approaching one year post-TX. Dry mouth is definitely an issue, although I do note improvement in the last 4 or 5 months and I'm sure you will too shortly. Don't know that product you mention but have seen the name here and I'm sure someone will weigh in with an opinion.

I too have weird taste issues but a lot of that comes from my radical neck dissection, which left the left side of my tongue completely numb. I do note some improvement with that, again in recent months, but none of my doctors can predict if I'll ever have feeling there, or how much if so.

I've only relatively recently begun to eat a wide range of solid foods, and even today I tend toward the wetter stuff. Bread, pizza and so forth are a real chore. I would just say to keep the water bottle handy and take small bites with a swallow of water or other fluid, chew extremely carefully and take heart, because things will definitely get better.

One day at a time is surely the way to go!

David 2

Jack, yes I am currently taking Pilocarpine. 5 mg 3X/day and have been for about 10 months and it definitely helps. At first, I noticed the sweating and runny nose and for periods of times I would only take it once or twice a day rather than the 3X as prescribed; However, I do not notice those side affects any longer. About two months ago I decided to stop taking it for awhile and see if it really was helping or if my saliva was just getting better. Well it only took a few days for me to realize the pilocarpine was helping, so I am back on it. A real mile stone for me was about 6 weeks ago when I actually had enough saliva to lick an envelope! Woo-Hoo. Good Luck. Carmen

Carmen...I would consider it a huge victory to be able to lick an envelope again! See, only someone who has "been there" could relate to this tiny task, that millions of people do every day & never give it a second thought! I'll be 2 years post TX 6/20/10 & my mouth is still very dry. Why don't the Dr.'s offer medication if it is available? I'm going to ask for Pilocarpine! I have been dying for a bolonga, mayo & lettuce sandwich on white bread. There is no way I could ever eat that with this dry mouth! Maybe, just maybe this drug will help!

I got so excited thinking about a bologna sandwich...I spelled bologna wrong! Good thing I remembered the OSCAR MAYER song!!!

Lick an envelope? I thought that's what wives were for..;-). Well, I might just dig out the bottle of pilocarpine and try it again for a while, who knows? Can't hurt, can't get any drier! I guess the drug works for some, but not all....;-(.

If I could chime in on the dry mouth issue...seltzer seemed to work for me 19 years ago after 7 weeks of RT. The carbonation seemed to stimulate what was left of my salivary glands. I understand that every patient is a unique case but this is a suggestion. I was on something called mystatin, I think, so long I don't recall.

Thanks Hubbedbee..I'll give it a shot..;-)

Hi again,

Hate to bother you people again, but the "weakness" I feel doesn't seem to get any better. I'm eating pretty well, at least not losing any weight, lost 35 lbs which I could afford, thankfully I beat the PEG, never had to use it, but I can't afford to lose more. The problem is I feel so weak sometimes, I just don't understand it. I don't feel like doing the things I used to like to do, like fishing, playing guitar etc. Am I missing something or is this normal recovery? Thanks for any info. Jack

Have u had your thyroid checked? Also what about current blood work up. Many of us here are on thyroid medicaton since the radiation cooked our thyroids. I also found myself suffering from malnutrition issues due to me limited diet after my peg was removed. I also give myself biweekly B-12 shots. And also part of it is just the healing process. Carmen

Carmen, Did your saliva ever come back on its own or are you still taking pilocarpine?