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Prolonged reaction to radiation treatments

Posted by RobinLea @robinlea, Aug 2, 2017

I had 8 weeks of Herbitux chemo and 7 weeks of radiation treatments for my tonsil cancer. Treatments ended 11 weeks ago (May 17th). My throat is very swollen and that along with the pain in my mouth, makes eating very difficult. My chemo and radiation doctors expected me to be better by about the 7th week after treatments ended. Now when they examine me, they just shake their heads saying they never saw anyone with such a prolonged reaction to the treatments. I was a little better a month ago than I am now. I thought the recovery would be linear, meaning I'd get a little better each week. I have instead experienced ups and downs. Is my prolonged reaction to radiation really so out-of-the-ordinary?

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Seth,
Bottom line - 3500 calories equal a pound of body weight. So much goes into that to make it difficult to figure out what you need to take in. Activity uses calories, so does treatment in most cases. Diarrhea equals calorie loss and without sufficient calorie intake, it leads to loss of body fat and then muscle. Exercising to keep muscles in decent shape requires more calories. Watch how you get the calories into your body. You don't want it all to be fat or sugar. If you want a high quality way to maintain or increase your weight, try BoostVHC. The VHC is very high calorie. An 8 oz box (like juice boxes) contains 530 calories with protein and vitamins. I got my first ex-huisband to start using it because he was on a slippery slope. 6'4" and weighs 150 pounds. He gradually stopped eating breakfast and lunch and that caused weakness, muscle loss, fatigue, etc. He was on a path to a wheelchair and then bedbound.
I think you're lucky to have a husband who will cook it all for you. Eating food is better for you than living on supplements, but using them as SUPPLEMENTS, can really make it possible to get the calories you need to fight cancer and keep your body in the best shape possible. Boost VHC is available online only. Nestle makes it and the price can vary a lot. I just found it for $36. for 27 boxes with free shipping.
Carol

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I posted just before my husband had surgery for cancer of larynx. That was Aug 13. He had larynx totally removed and can eat some foods but still has life saving PEG tube. Before cancer he weighed 240 pounds and dropped to about 140 before the tube. He just recently hit the 150 pound mark and we were very excited. Between high calorie feeds and real food he is regaining his strength. What a miracle. Thanks Roswell Park!

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You are not alone my worst weeks were those for the first 3 months after end of radiation for tonsil cancer. I had my feeding tube for nearly a year after treatment. My throat is still tender and it has been 15 months but I’m eating again and the tube is gone. You’ve been through a bodily trauma and can expect that some after effects may last for life.

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@ozark

I posted just before my husband had surgery for cancer of larynx. That was Aug 13. He had larynx totally removed and can eat some foods but still has life saving PEG tube. Before cancer he weighed 240 pounds and dropped to about 140 before the tube. He just recently hit the 150 pound mark and we were very excited. Between high calorie feeds and real food he is regaining his strength. What a miracle. Thanks Roswell Park!

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Very happy to hear he is doing well! How are you holding up through all this?
Also, did they give you a copy of our (Roswell's) book - Healthy Eating for Head & Neck Cancer Survivors? If not, private message me your email (if you'd like it a digital copy) or your real address (if you want the paper copy).

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I had chemo and radiation 5yrs ago for mouth cancer I've never smoked I had bad complications after treatment I'm still not right and I haven't seen a Dr that can give me any answer I barely eat I can't sleep unless heavily medicated I have pain in my mouth and jaw I freeze to death while I sweet to the point that my clothes are wet I'm alive but my life is totally changed

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@cjasher

I had chemo and radiation 5yrs ago for mouth cancer I've never smoked I had bad complications after treatment I'm still not right and I haven't seen a Dr that can give me any answer I barely eat I can't sleep unless heavily medicated I have pain in my mouth and jaw I freeze to death while I sweet to the point that my clothes are wet I'm alive but my life is totally changed

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I'm not a doctor but am a sinus cancer survivor. One thing we all know is that radiation is at once cure and punishment. It's a tough treatment with long-lasting side effects. That being said - you've had radiation to the mouth area which puts all kinds of control mechanisms in the line of fire. Have you had full bloods done? Have you had your thyroid checked? Any discussion with your oncologist? You may have more than one issue and not just a single cause. There is also trauma, depression, and anxiety that can be causing some issues especially sleeplessness. Don't accept "I don't know" for an answer. Make sure the docs are taking the time to listen and consider. Frustratingly, you may have to search for the doc who will pay you some attention. Let us know how you do.

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My heart goes out to you cjasher. I'm sending you healing thoughts, energy, and prayers.
I, too, had never smoked and no HPV but I defied MDs and refused the radiation & chemo (burn & poison) they strongly pushed after my surgery for (stage 4) tongue cancer a little over a year ago--and am doing very well, NED, thankfully.

Have you considered alternative practioners? Another suggestion is to see if you can get access to medical marijuana which I believe would help you immensely. Keep me posted and hope my suggestions are useful to you.

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My husband had stage 4 tonsil cancer in 2014. After 7 wks of radiation and 2 chemo rounds, he had the radical neck dissection as he had lymph nodes showing cancer. After 3 1/2 years he's having some side effects, including dry mouth, swallowing difficulty with most foods unless they are soft or wet with gravy, sauces, etc. Diagnosed in late 2015 with "Late Stage Radiation Effect" as he has muscle tightening in his left bicep, and it will take him to his knees if he's standing. It also happens while sitting. This is the 4th time it's occurred and it goes on for days our weeks until it suddenly stops... no rhyme nor reason. The side effects are different for everyone so it's hard to adjust a bit to the new normal. Give yourself at least 6-8 months and if you have swallowing difficulty and can find a speech therapist, they can have you do swallowing therapy, with exercises that help regain your swallowing skills. Best of luck to you, as it's a rough road getting back to normalcy. With faith, a good attitude and determination it can be done! Just grateful my husband's cancer-free at 3 1/2 years post- treatment!

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@ozark

My husband made it about half way w radiation and could dono more. He had sores on his face and inside of his mouth. It got worse after he quit -- you continue to "cook." I don't know how he survived but he did. That was two years ago. Now he has cancer of larynx and must have the whole larynx removed in a big big operation. My only recommendation would be to get a peg tube if this continues. My husband lost 100 pounds and I'm quite sure he would have died without the tube. Not only cane get nutrition but his pills can goin there, too. If you are continuing to lose weight I'd recommend it. I feel terrible for you just knowing the suffering and pain. I hope somebody can help you.

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I asked my radiation oncologist about a feeding tube. He doesn't think I will need one, because I'm only having treatment on one side of my neck. I don't think he understands how difficult it already is to swallow. I take tons of medications each day. I don't know how I will manage if my swallowing gets much worse.

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@ozark

My husband made it about half way w radiation and could dono more. He had sores on his face and inside of his mouth. It got worse after he quit -- you continue to "cook." I don't know how he survived but he did. That was two years ago. Now he has cancer of larynx and must have the whole larynx removed in a big big operation. My only recommendation would be to get a peg tube if this continues. My husband lost 100 pounds and I'm quite sure he would have died without the tube. Not only cane get nutrition but his pills can goin there, too. If you are continuing to lose weight I'd recommend it. I feel terrible for you just knowing the suffering and pain. I hope somebody can help you.

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beakmom,
I'm Carol, one of the moderators here. It doesn't sound like he refused to give you one. If you find that you need one to get adequate amounts of nutrition and fluids, tell him you NEED one. Don't ask, tell him. And, mention that you need it to take all of your medication.
Carol

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