I am now 14 months into base of tongue tumor recover (ie since end of radiotherapy only treatment). Things in general certainly seem to be going well although I still have the dry mouth. However, in the last month I have begun experiencing the occasional runny nose. Fortunately, by its nature I am instantly aware of it. Has anyone else experienced such?

At times another mild symptom is what feels like jaw cramp but this fades after seconds following jaw movement.

How strange this whole experience has been.

Regards

Yes, yes, and yes.

I'm 18 months since radiation-only for tonsil and lymph node tumors, still get dry mouth, and have had chronic upper respiratory infections (runny nose, phlegmy cough) since the onset of radiation treatments last March.

Daily vitamins seem to be a big help, but don't wipe out the problem completely.

Ron...did you have alot of scar tissue from the radiation? I guess I am just wondering if you had a great deal of swelling and did you experience trouble with swallowing at all? Doug is still having so many problems and the newest surgeon I took him to just said, "well...20 years ago we would have just removed your tongue" implying, I suppose, that he ought to be thankful even though he still can't drink or eat. Not that we aren't thankful he is alive but we aren't satisfied if you will....

Yes to the scar tissue and yes to the trouble swallowing. You learn to adapt to it, and I can now swallow enough to keep up my weight, but its still a problem.

If you think about it too much it gets depressing, but you just take a day at a time, add some butter to a creamy noodle casserole, order eggs over easy, mix up another milk shake, and life goes on.

Some of us on this forum are still on a feeding tube, so you just try to be grateful for whatever you can do.

Ron,

I am comforted by your reply, pun included.

What I did not include was the fact that I am also largely without taste buds. I have some sweetness taste with such flavoured foods but this seems to disappear as eating progresses.

What a huge loss this is, but, as we all say.......

Regards

The two posts mentioning scar tissue following radiotherapy treatment surprised me. I believe that I have some scar tissue at the base of my tongue caused, I assumed, by laser surgery. This I hope to confirm at my next UK check-up in early December. I did not know that radiotherapy could cause scarring.

My swallowing causes me few problems always providing the food is suitably runny to offset the limited supply of saliva.

The point is well taken how very lucky are we who do not require tube feeding!

Regards

Well, and that is the thing...he is still on the tube feeding but he barely keeps his weight on even though he lets it go on a continuous drip overnight. He lost sixty pounds to begin with and is still 40 under what he should be for his height. Like I said, we are thankful he is alive but the tube feedings..well..they suck.

Hi Fridge
I also have the cramps but mine are in my neck below my jaw, I also find my bottom lip droops,especially in the morning, it comes back in time, but I feel quite conscious about it.
I felt another lump in my neck, but was told this was scar tissue caused by the radiotherapy.
I too have the constant dry mouth. I had both my submandibular salivary glands removed, I have learned to cope with this now, but being a singer causes problems,also eating certain foods such as bread or chicken is a pain as it takes so long to swallow.

But hey I'm still here thats the main thing all these problems I can cope with....just remember you are not alone, we all know what your going through.

Best Wishes
Tracey

Hey. Got to join in here.
Muscle cramp in my neck is something I get almost every day. The whole of one side of my neck will seize up and I have to stretch it to kind of get it free again, and I too have suffered respiratory problems and the feeling that i'm choked up which can be quite daunting sometimes. I often wonder if the lack of saliva and the consequent dryness has contributed to this feeling of impaired breathing.
As there are so many side effects to get used to over time I guess they can cause a knock on effect to other ailments. Stress no doubt from all the treatment, worry, and diet adjustment can drag you down and make everything worse as well. The psychological impact alone is devastating enough. I'm still having probs both mentally and physically over two years after treatment but each day is a step in the right direction and I simply have to put things into perspective and stop thinking about how I was before cancer. When I say mentally I mean depression can hit me from time to time. I do still feel very sorry for myself sometimes and I guess some of you feel the same. We all want to be as normal as possible.
The major benefits are that of course I no longer smoke and rarely drink.....but I feel that sacrifice was maybe too little too late.
Anyway....we are as we are and we are as one on this site.
Good Heath (sort of)

Fridge,

I'm with you as well on the lack of taste buds. I experience food through the texture and color, but in a blind taste test I doubt I could tell chocolate from strawberry.

Foods with strong taste and smell I can also taste, like mint, eel, and smoked salmon.

When I go out to restaurants, my wife will say "how's your soup?" and I always have her taste it because I can't taste it and I'm curious myself. If she tells me the food is bad, its like telling a blind man that he is with an ugly girl. It shouldn't matter, but it does.

On Saturday, I put jelly and butter on my spaghetti with marinara sauce. My wife was appalled, but it made the spaghetti easier to swallow, and tasted all the same to me.

The only way I can deal with the permanent loss of food choices and the lack of taste is to somehow make it funny. Feel free to put jelly on your pasta and to use my blind-man joke.

Heath,

I think I'm also relating to the cramps. Except in my case its more like painless, pulsing muscle spasms on the right side only of the trapeziod muscle that goes between the neck and shoulder.

It has been 6 years since my husband had surgery & radiation for tongue cancer,he is still tube feed as the only thing he can handle is liquids with difficulty.he is very thin and always tired.

Hi all i had surgery in april 2005 followed by radiotherapy. about 6 wks after surgery i could eat again and was able to chew meat and taste all my food. after radiotherapy i could not even sip water for some time. my taste buds have now returned and i live on soup and soft puddings together with ensure plus, i am still unable to eat solids as i find i cannot chew anything as the right side of my tongue is paralised and my tongue sits sideways in my mouth. very boring but better that a lot of throat cancer sufferers. i have always been a whisky drinker and i have found that a small drop of whisky in a tumbler of water works wonders for dry mouth!!! i,m hoping acupuncture will get my saiver gans working again. keep you posted if it succeeds.

regards bill