Katrina,

Have you seen a speech pathologist (these are the folks who can help you improve your swallowing) to see if they can help you with your swallowing and give you some exercises to do. I have also had problems with esophageal strictures--they can happen even if you are swallowing liquids, they don't just happen ebcause of not swallowing they are a reaction radiation that some of us have worse than others.

I've had to have my throat opened three times (the first time it was completely closed up)and I need another dilation soon. Often you need to have the surgery repeatedly, but there are exercises you can (and should) do to build up your swallowing muscles as well. If you are having a hard time swllaoing your own phlegm and saliva, that's a sign you probably need another dilation.

Whatever you do, do't give up! I don't know why this is so hard for some of us when for most people swallowing returns without these problems, but there is more and more research being done on rehabilitation of this problem (the surgeon who does my esoph. dilations is at a major CCC and tells me this problem is more common as radiation is recommended for more and more oral cancer patients and is more effective at getting the cancer--likewise strictures ahve become a bigger problem. A speech pathologist I saw who is an expert in dealing with swallowing problems for oral cancer pts. told me that the problems seem to be worse with IMRT but my local ENT says that isn't true.)

I wish I could tell you I was off the g tube at last--after the last diulation I got so I was getting half my calories orally (though almost all liuquidor yogurt/pudding texture stuff) before my throat seemed to tighten up again. I am determined that eventually I will get off the tube entirely and am doing exercises failry religiously towards that end. Please send me a private message if you want some support through this.

Nelie

Pam,

Obviously that will depend upon when Wayne says he can't.

For me, and I didn't have the Peg, I think I quit around the 20th to the 25th rad. I went totally liquid and I didn't keep up with my daily goals. I didn't have the benefit of this site until 2 weeks post Tx so that didn't help me realize how stupid I was.

Word to the wise and I'm sure you have heard it before...make him get a minimum of 48ozs water and 2000 cals "food" each and every day and when the Tx ends get him to increase those amts as soon as possible.

Good luck, you two.

Pam, you should let Wayne read about some of the eating issues that others on this board have while going through treatment...........then the PEG may not be such a big deal to him! He's lucky to be doing so well. IMRT is not as difficult for most patients, he may be able to eat throughout his treatment.

Thank you, everyone. It is getting harder for him but, he is very determined to eat as long as he is able to.
He does drink a lot of fluids everyday, so much that he is up about 4 times a night in the BR.
For dinner tonight, he had filet mignon and a baked potato, ate every bite. It does take him about twice as long as it usually would though.

The thing that seems to depress him most is that he does not have the energy to do as much as he normally would. He knows it is because of the cancer and the treatments, but, it still gets him down a little.

Pam

Pam,

His lack of energy is from the rad's toll on the body and it may have already affected his thyroid. I'm sure his docs are on top of his thyroid levels but just ask to make sure. Normally the thyroid takes much longer to show signs of rad damage but inquire anyway.

I was one weak puppy for months post Tx and I still don't feel as strong as I was before so tell him to accept it for now because there's little he can do other than follow his docs recommendations.

I'm sorry I misread your signature. I thought he had finished his rads but I see he's only completed 20. Forget the thyroid, it's just the rads most likely. His body is being attacked and it's fighting back and that takes a tremendous amount of energy and remember at 2000 cals he's probably just giving his body enough to maintain his weight under NORMAL circumstances and right now his body is burning more fuel to sustain the war. Tell him to hang tough and sleep whenever he feels like it.

Pam,

I know exactly how your husband feels about the PEG. I hated the thing from day one and was determined to have it removed as soon as possible following Tx. I realize it was a necessary evil but I still hated the thing. I must have gone through 50 rolls of adhesive tape which eventually pulled out every hair on my chest and stomach over the weeks. I then developed a rash/irritation all over my stomach and chest area from the tape, etc., etc., one aggravation after another. Also, a word to the wise, tell your husband to be careful and do not cough if he has the tube uncapped! I did that once, but only once. What a mess that made!

I had to start using mine around the 4th week of Tx which is about where your husband is now. I had to use it from that point for about 6 weeks until about 3 weeks post Tx. It was a happy day when I finally got rid of the thing.

Bill D.