long term side effects of radiation for head/neck cancer

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RE: long term side effects of radiation for head/neck cancer

by Sdurnell on Tue Feb 27, 2018 08:41 AM

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John,

I had all my teeth out just before radiation, so no risk of osteoradionecrosis, but the cost was $6500.  My dental insurance only covered a little, so we paid out of pocket and I applied to my medical for coverage.  I was denied, but had four of my doctors write to the insurance company to say it was a medical necessity and they ended up reimbursing us.  Then dentures were several thousand more.

Many people are able to keep teeth if they adhere religiously to a regimen of immaculate oral care.  This includes more brushing and flossing than before as well as using dental trays to soak the teeth in fluoride nightly.  I'm guessing you and Greg tried this but it didn't work for you?

Susan

RE: long term side effects of radiation for head/neck cancer

by StephTim2 on Thu Mar 15, 2018 08:05 PM

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On Feb 03, 2012 7:51 PM familypractice1 wrote:

I am 13 years out and cancer free. The problem now is swollowing talking eating.  I am looking into vital stim treatment and stem cell tranasplant. Has anyone tryed this.

Hi, my husband has been fighting this for 7 years now. HPV related throat cancer, he had direct radiation to his throat. Radiation is the gift that just keeps on giving! He ended up with partially paralyzed vocal chords after 2 years and has a Trach now and he has a feeding tube because of scar tissue and a tightened esophagus. We did the dilation but the Dr said it’s like a rubber band and just goes back to where it was. He’s still drinking liquids and could drink milkshakes etc if he wanted. He says they’re too sweet though. He does not get any lung infections and does not aspirate or choke on food anymore so that’s all good. He has a speaking valve and talks normally. I would like to know if there are any new fixes to this problem though, he misses eating. Good luck to all. Stephanie

RE: long term side effects of radiation for head/neck cancer

by cagy2 on Thu Mar 15, 2018 08:30 PM

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Susan No amount of brushing or flossing will save teeth from radiation. I had no cavities before, Flouride was in vogue years ago.

RE: long term side effects of radiation for head/neck cancer

by cagy2 on Thu Mar 15, 2018 08:38 PM

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I just had my 14th dilation over a 10 year period. Everyone Is different depending on various situations. My sister in law still has a trach after 3years and still doesn’t eat and her throat is open to 18. Mine is 15. Just easy to stay slim. Lack of appetite is my problem

RE: long term side effects of radiation for head/neck cancer

by Sister58 on Thu Mar 15, 2018 09:21 PM

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Everyone's experience s different. I am here to ask for prayers for my brother, who I have shared a lot about on this sight. He was just diagnosed with his 4th bout with this disease. We go to Dallas, Monday to find out how bad, and treatment options. He just had Laryngectomy, and his tongue removed last June. Please pray for him. As always, my prayers are with you all.

RE: long term side effects of radiation for head/neck cancer

by Sdurnell on Thu Mar 15, 2018 10:06 PM

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Actually, some people do quite well with diligent use of their fluoride trays in preserving their teeth.  It depends partly on the condition of the teeth and mouth before radiation, and I'd think partly on genetics and luck.

I agree that extra brushing and flossing alone will not save teeth, but they are essential to a rigorous dental hygiene program.

The fluoride that was in vogue years ago has saved many from dental decay, and its application at least once a day is essential if one wants to keep teeth after radiation.  That said, it does not always work.

Susan

RE: long term side effects of radiation for head/neck cancer

by Sdurnell on Thu Mar 15, 2018 10:10 PM

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On Mar 15, 2018 8:38 PM cagy2 wrote:

I just had my 14th dilation over a 10 year period. Everyone Is different depending on various situations. My sister in law still has a trach after 3years and still doesn’t eat and her throat is open to 18. Mine is 15. Just easy to stay slim. Lack of appetite is my problem

I have had about 20 dilations in a 5-year period.  My most recent one was over a year ago, so I have hopes that they are becoming more effective.  I also am only 15 mm, but that is enough to eat most things.

I also struggle with appetite.  When I was in radiation and then got my feeding tube I had a lot of problems and no appetite at all.  Now I can eat almost any amount (within reason) at any time, but only feel hunger in the evenings.  I eat mostly out of habit or if something seems especially yummy.

I haven't heard this discussed much, so don't know how common it is.  I'm 7 years out.

Susan

RE: long term side effects of radiation for head/neck cancer

by cagy2 on Thu Mar 15, 2018 11:44 PM

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I think I eat out of habit. Never crave food and have given up on eating meat that I have to chew. Having 5 cancers is more than my share. Can’t take any more radiation’s. When I read these post I feel like I have been pretty lucky compared to some others. It’s a lonely road to travel.

RE: long term side effects of radiation for head/neck cancer

by Shirleyperez on Fri Mar 16, 2018 12:23 PM

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On Mar 15, 2018 8:38 PM cagy2 wrote:

I just had my 14th dilation over a 10 year period. Everyone Is different depending on various situations. My sister in law still has a trach after 3years and still doesn’t eat and her throat is open to 18. Mine is 15. Just easy to stay slim. Lack of appetite is my problem
After3 dilation, dr isafraid to give me more. I am 32 yrs survivor of base of tongue and am now at end of my pharynx cancer treatments. Could never eat very good but knowing how to cook and what to eat I got along. I am hoping I can go back to eating that way and won’t complain. I would kill for a rare hamburger, or anything as I love eat. I am on a feeding tube now but counting the days I can have it removed. Never needed it since I never lost my ability to swallow water, 530 cal supplements and egg drop soup which I strongly recommend. It was the only food that had any taste and comfortabling to swallow. I’m almost 80 now, but a young 80. Saw my first great granddaughter born. Can’t complain. Besides having trouble swallowing, 29 yrs after radiation, my palate gave up and I have a very severe speech impediment. Will look into this once I find out if I am cancer free. It’s very frustrating, to say the least! . I NEVER SMOKED,! Shirley

RE: long term side effects of radiation for head/neck cancer

by Marmaduke on Fri Mar 16, 2018 03:01 PM

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Susan: it’s always good to hear your advise and concerns on This thread. I think you remember me from our conversations here. Im stillplanning on going to Alaska this coming August. I am also going to get my feeding tube out next Thursday. I still can’t swallow much but can drink my supplement etc. I’m having difficulty with the tube leaking where it enters my stomach. Surgeon replaced it this last January but it never helped with the leaking. I have to get my bandage changed 2-3 times a day and my skin is becoming red and raw there. Thought it best just to get it out. Wish me luck. I read where you were aware of people being able to keep their teeth after treatment. I too have been able to keep mine so far, but only 2-1/2 years out from treatment. My dentist says my teeth are in great shape and commends me on my care of them. Brushing and flossing much more than I used to do. I also use fluoride trays every night faithfully. The problem I have is my dentist wants to do $3k worth of work in filling replacements and two new crowns. As you can imagine, I am very wary of spending that kind of money if in the end, I’ll lose them anyway. We are both retired and on fixed incomes and very little dental insurance to help pay this. I have heard such terrible stories about those spending tons of money only to have this happen anyway. I know there are no guarantees with this but was glad to hear you have heard of people being able to hang onto their teeth. Any more info would be appreciated. I can barely speak now and may look into help with that. Ive been reading about s speaking valve which may be an option for me. I get so exhausted from trying to talk I can do little else and want to do more if possible. Sorry for the long read. Take care, Donna
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