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 radiationtonsil on Fri Mar 16, 2018 04:19 PM

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Hi Everybody, 

I am 66 male 23 months out.  I visit the dentist at least monthly.  I have had many cavities and two crowns.

My front teeth have lost the interior pulp and have been filled with cement.   Three weeks ago I lost my first two teeth .. Lower center and lower center right.  I recently read a Chinese study (in English) of 20 HN radiation patents.  The conclusion is most of the teeth fall out between 18 and 40 months out.  I did not save the link.  There is a lot of variance among patients.

I hope I can save most of my teeth.

Greg in Chicago 

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

by Marmaduke on Fri Mar 16, 2018 04:33 PM

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Greg: Thank you for your post regarding your teeth. As I said I’m very hesitant to pay that much for crowns and replacement fillings and then lose them anyway. We are not wealthy people. Wishing you luck in saving your teeth. I’ll keep posting as time goes on for me as to how my teeth are doing. I’m going to be 70 soon, so I’m sure that age is a factor also. I wonder why I was told by my dentist I did not need to get my teeth pulled prior to treatment? In the long run, We would be have been better off, in my opinion. God bless, Donna

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

by cagy2 on Fri Mar 16, 2018 05:51 PM

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It has been my experience that depending on the location of the cancer, the teeth may be in the way so some are pulled, as in my case.  After several years they all had to come out so please don't waste money on restoration.  They become very brittle from the radiation.  8 years out

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

by cagy2 on Fri Mar 16, 2018 06:02 PM

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Dentist don't really care, just so they get paid.  Most people lose their teeth after a few years.  Keep the site dry and tape the tube to keep it from moving in and out.  You will have to be eating pretty well before your tube in taken out.  My throat closed up completely before mine was removed, and this was months after radiation was done.

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

by john19382 on Fri Mar 16, 2018 06:25 PM

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It has been awhile since I posted.    I really appreciate everyone sharing their experiences - even the ones that rasie a level of concern about the future. 

I finished my proton radiation treatment on July 8, 2013  - so, soon to be 5 years out.

I also have had multiple surgeries prior to the radition treatments - 1) partial neck disection to remove mass, 2) to remove what was the source of the cancer on the base of my tonsil (stub).

One thing I think it is important is that the technology and protocols are changing at a very rapid pace.    This is good for those who are early in their journey and provides a level of hope that their side effects may be less severe. 

We all know everyone's journey is different.   I am thankful that we are all here today to share our experiences.

I was able to find a very good speech / swallow pathologist as part of my medical team.    Her focus is so different from the oncologists whose focus is on preserving life.   Prior to my treatment I had no appreciate for the value of this role.   That has changed and I plan on following up with her well beyond my 5 year anniversary date this July.

Thanks again for all the sharing....

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

by Marmaduke on Fri Mar 16, 2018 06:38 PM

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Cagy2: Thanks for your response. You’re right about the dentists are pretty much all about getting paid. I’m not going to get any work done unless I’m in pain. I’ve had my feeding tube in for over 2-1/2 years now and had no problems keeping it dry and looking great until just recently. The surgeon did something when he replaced my second tube this past January because soon after it began leaking very badly. My husband/nurse has always changed and cleaned it for me with great success until just recently. Rather than fool with anymore I think I’ll get it removed. Kind of tired of having thebtube dangling from me all the time. I doubt I’ll ever eat much food anymore, but glad I can still swallow liquids. If I have to get it back in, do be it. I just don’t want to get that area infected and have to do hyperbaric treatments again to help it heal. I have already done 60 2 hr “dives” since ending my treatments to help heal my mouth and throat. I did not notice much of an improvement afterwards though. Thanks again for your input. Wishing you continued healing and recovery. Donna

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

by cagy2 on Fri Mar 16, 2018 06:47 PM

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WOW! 2 1/2 years.  I would choose to go on supplements forever instead of that.  I never had hyperbaric.  suggested but why pay for another wing on the hospital?  Leaking, maybe another hole or larger tube.  If you can eat what I do, oatmeal, soups eggs, potatoes, most everything but meats. They are hard to swallow and I get tired of chewing because false teeth aren't made for grinding--except for my tongue that seems to get caught once in awhile  LOL

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

by Shirleyperez on Fri Mar 16, 2018 07:20 PM

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On Mar 16, 2018 6:02 PM cagy2 wrote:

Dentist don't really care, just so they get paid.  Most people lose their teeth after a few years.  Keep the site dry and tape the tube to keep it from moving in and out.  You will have to be eating pretty well before your tube in taken out.  My throat closed up completely before mine was removed, and this was months after radiation was done.

Are you saying your throat closed up months after radiation? My last radiation will be mar 19, and am praying I can start swallowing a couple of weeks after. I’ve been on egg drop soup and 530 cal drinks for mos.

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

by Marmaduke on Fri Mar 16, 2018 08:04 PM

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Cagy2; I hear ya about the feeding tube. I had to go one month without using it except to flush it out once a day, and not lose any weight, before my Rad would ok me getting it out. They weigh you in the beginning and then again one month later, and I gained 2#s I had the tube put in 4 Rad treatments shy of my 37 treatments. They put me in the hospital for a week and put it in because I lost over 60# and really weak. I could not even swallow supplement without aspirating most of the time. My swallow ability fluctuates over time. Had speech therapy and tried to get my throat dismayed with no success. Drs at University Hospital in cleveland said my throat was not closed when they attempted to open it. I’m pretty much resigned to a liquid diet from here on. Thankfully, a margarita is liquid. ?? Nice chatting with you. Donna

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

by cagy2 on Fri Mar 16, 2018 09:07 PM

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Hi,  I lost 50 lbs in my 2010 bout with tongue cancer and only gained 10 lbs back in 8 years.  Weight the same as when in the service 60 years ago.  They won't take it out until you start gaining weight. like I said, my throat closed up while the tube was still in, this after I was starting to swallow again.  Have you given up dilation?  The ring at the top of the esophagus is the stricture that closes on me. 

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