My greetings to you all...
My Dad had 38 radiation treatments last winter, and then a radical head/neck dissection this past August.
He's doing well, and has gained back most of the 30 pounds he lost. However, he's not been able to have his dentures replaced as yet, since "the architecture of his mouth will continue to change as he heals". (He eats a good breakfast, and drinks 3-4 cans of Deliver daily.) He has fluctuating after-symptoms (Numbness, tingling at the surgery site, and burning in the throat area). My questions are these:

1.How does he deal with the constipation that arises from this limited diet? Should he explore having his denutres replace or wait that out?

2.Is "burning" normal nearly a year after radiation therapy, and almost 8 months after surgery, or is that indicative of another problem? He had a CAT and PET scan recently, that didn't turn anything up. He has a "pinprick" near the surgery site, that he had biposied, but the Tumor Board thinks it's not to worry about. I hait to wait for another axe to fall, but he's so grateful for the reprieve, that perhaps the best decision is no decision...?

I thank all of you for your time -- My best thoughts and prayers go out to you as you continue to face your own challenges.

Hi Alex,

I can address the constipation. There are prescription laxatives that work very well and natually. I used Glycolax which worked very well. When you take heavy pain meds, constipation is trhe end result. I still take benefiber twice daily to aid my movements.

I'm unsure about the burning in the throat area. Hopefully some else can address the issue.

Good luck,

Steve Daib

Things still burn me. I am back in treatment for a recurrance but even before reentering treatment. Almost everything I tried to injest burned. I have never been able to get off of my PEG.
Darrell

Alex,I can also recommend Benefiber [we buy it at Walmart} it dissolves completely into any liquid -ie- the Deliver- and you could easliy mix it into scrambled eggs. After starting with a large dose when he got home from the hospital, John only uses a small amount every few days now and it has helped him stay regular. Best wishes to your Dad. Amy

Thanks so much for your responses --
It seems Benefiber may be the way to go!
I'll call my Mom with that info today.

If anyone has any more thoughts/suggestions on the "burning" issue, I'd be most grateful...It seems this issue comes and goes, in addition to the neck pain, tingling, etc. that so many of you mention.

My Mom mentioned forgetfullness on my Dad's part, too -- I read some of the posts re: "Chemo Brain". My Dad's not had Chemo as yet - is forgetfullness a possible side effect of radiation and surgery as well? (I've read that anesthesia can stay in the body for over a year, and contribute to this kind of issue.)

I can't tell you how much I appreciate your time and energy -- good luck to you as well!

There still unpleasant neck sensations for me nearly 3yrs out. I found doing neck exercises helped loosen up the muscles. Do these very slowly!

Wrap right arm around neck holding right forearm w/left hand & turn neck right
Repeat on left.

While seated take right hand & place under left thigh. Left hand holds elbow. Turn head right.
Repeat on left.

Now this one is hard! Don

Alex,
My husband is 4 yrs post treatment this week and still suffers from the tingling and burning. The tingling comes and goes now. He just massages his neck and shoulders. The burning gets less and less.He found that avoiding spicy foods, cilantro, tomato products,and drinking milk with his meals helped.Now we can use seasoning again so it does get better. We had to make everything spice/seasoning free for a long time to help with the burning. He also has the forgetfullness and no chemo. We jokingly call it his mad cow disease. But we had his thyroid tested and found out the radiation had destroyed it, so he is on thyroid medication and it has helped. Hopefully this helps. Good luck

Robin

PS his onc dr's. said the tingling was called Laramit's syndrome(spelling). I couldn't find much about it but was told it was common with radiation treatment to the throat/head area. ????
Robin

Alex, I'm 10 months out and still get burning sensations in parts of my mouth and throat when I try to eat all sorts of things (anything acidic bascially) and sometimes even when I'm not eating anything. It has gotten gradually better with time but my ENT said I may always have some of these sensations.

Robin,

The tingling sensation is sometimes referred to as L'Hermitte's sign, and it can be associated with the after-effects of radiation (but can also be triggered by other factors as well). I recently had increasing amounts of tingling in my left arm and hand, and an MRI showed some degeneration in the cervical spine area -- which may or may not have been related to having had radiation. So far, physical therapy has been helping and I haven't had to try anything more drastic.

Cathy

Thanks, everybody --

I have to say one of the things I find so comforting about sharing my thoughts on this website (and reading those of others), is that no matter what's mentioned, SOMEONE has already been through it!

I'm so grateful to all of you -- all my good thoughts go your way, as we enter Spring, Nature's time of growth, healing and hope!
Keep the Faith -

Hi, everyone --

Thanks for all the advice on testing the Thyroid.
Those results came back looking normal...However, his Doc did find some Anemia (not surprising).
That would explain some of the spaciness and fatigue he's been experiencing.
Question -
How can het get his red blood cells stronger on his limited diet? He's still on 4 cans of Deliver per day, plus whatever else he can eat.
Are there supplements or other options you can recommend? Thanks for your help!

BTW - good luck with your PET Scan next week, Nelie -- I'll be thinking of you!