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 Wed Jun 06, 2018 03:47 PM

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Amen Gerry

Thanks for the testamonial.  

I believe I was overradiated and am suffering tooth loss, scaring in many of my neck muscles and on and on.

But I have a life and I am more alive in many ways than others without my maladies.

greg in Chicago

 

 

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

by john19382 on Wed Jun 06, 2018 08:04 PM

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Thanks Gerry, Your message helps put things in perspective and is spot on about the variation in side effects. My sister passes away 5 years ago this month after her breast cancer resurfaced in her brain. She told me something after my initial diagnosis about how it changes a person's perspective about what is important. At the time I was not in agreement with her but almost 5 years out I have to say I am beginning to get it. I tell folks now that in addition to a bucket list about things I no longer think are important. It rhymes with buck it. ?? For me every day above ground is a good one... thanks again for sharing...

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

by Georgenone on Fri Jun 22, 2018 06:58 AM

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Yes , radiation is truely remarkable. It's a great treatment but it's also horrible.

1998 I had radiation for cancer in thr larynx. I experienced severe burning of the neck but for the next 10 years the only issue was dry mouth.

2007 I had  a laryngectomy and glossectomy with a forearm freeflap for repair. More radiation. Somewhere in this mix my dry mouth was cured with what is now an abundance of saliva. Radiation at the time was nothing more than a very mild sunburn on the neck. It seemed too easy to be true. I escaped all the swallowing issues until about 4 years ago. I've had about 6 dilations and every one had an impact on taste. The dilations were necessarry because of growing scar tissue.

2017 Cancer now growing in scar tissue that was causing need for dilations. Surgeon at last minute declined  esophagectomy and another surgeon stepped in and did a total pharyngectomy. The doctor removed part of esophagus and rebuilt neck with muscle from the thigh. Then comes time for more treatment. Radiation now has a suprise I had not known before. Radiation totals from 1998 & 2008 are 142gy. 140gy is considered a lifetime total and I cannot have any more radiation.

Life just becomes more of a mystery all the time.

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

by EDWARD123 on Mon Jun 25, 2018 01:39 AM

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On Apr 25, 2013 2:56 AM smb22 wrote:

Sorry my friend, I am 10 years out and I cannot swallow or talk very well. I am looking for the same type of info. If I or you find something lets let each other know. I have heard of stem cells from swine being used to regererate damaged tissue but I can't find out any more about how to get into a research program as a voluteer. Anyway I'll do my best to let you know if I find out something of value.

 

IF U  RUN INTO A RESEARCH  PROGRAM ?? LET ME KNOW ,,, I,LL BE RIGHT THERE WITH U ,,,

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

by Proxielocks on Thu Jul 05, 2018 07:00 PM

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On Jun 25, 2018 1:39 AM EDWARD123 wrote:

On Apr 25, 2013 2:56 AM smb22 wrote:

Sorry my friend, I am 10 years out and I cannot swallow or talk very well. I am looking for the same type of info. If I or you find something lets let each other know. I have heard of stem cells from swine being used to regererate damaged tissue but I can't find out any more about how to get into a research program as a voluteer. Anyway I'll do my best to let you know if I find out something of value.

 

IF U  RUN INTO A RESEARCH  PROGRAM ?? LET ME KNOW ,,, I,LL BE RIGHT THERE WITH U ,,,

Please let me know if you hear anything about the Stem Cells. My husband has been suffering for 10 years. My husband is on a feeding tube. He can't eat, he can't talk. He can't do all the things that he loved to do in life. Which were, talking, eating, running. This throat cancer has distroyed him. His teeth are rotting and breaking off. He has been to a number of doctors. When to UCSF in San Francisco. News came back that there was nothing else that they could do for him. Also, the dentist can't do anything for him except to clean them. He said why put out thousands of dollars. They cannot pull them and put in implants or dentures because he could blead to death.

It is very depressing for him. However, what people don't realize and understand is that is it also VERY depressing for the spouse also in a case like my husband is going through. Mental Health for both of us, Marriage counseling to deal with it and how to get through it. I know there has to be others out there that are going through the same thing that I have been going through. I can't seem to think or concentrate most the time. 

I can't see it getting any better for him. He still works for the government. However, does not speak at work. He has a badge that UCSF gave him and he wears it all the time. It say that he is on voice rest and cannot speak. Can't remember what else it said on it. This nasty BEAST that we call CANCER destroys families lives. I will always be there for my husband no matter how bad it get. You stick through it together and you pray a lot. I seem to do that when I am driving. I pray and I talk to God. However, I have a non-believer husband.

Prayer's to all that are trying to beat this Nasty Beast as we call CANCER.

Patty

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

by JustJulz on Mon Jul 09, 2018 04:11 PM

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That was my question too.  My husband just finished 5/30/18.  Hoping for the best but trying to get as informed as possible about the future.  

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

by MDyogi on Wed Jul 11, 2018 05:06 PM

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On Jun 25, 2018 1:39 AM EDWARD123 wrote:

On Apr 25, 2013 2:56 AM smb22 wrote:

Sorry my friend, I am 10 years out and I cannot swallow or talk very well. I am looking for the same type of info. If I or you find something lets let each other know. I have heard of stem cells from swine being used to regererate damaged tissue but I can't find out any more about how to get into a research program as a voluteer. Anyway I'll do my best to let you know if I find out something of value.

 

IF U  RUN INTO A RESEARCH  PROGRAM ?? LET ME KNOW ,,, I,LL BE RIGHT THERE WITH U ,,,

Has anyone tried medical marijuana for some of the swallowing issues?  My husband is 5 years out and is really starting to get bad swallowing, numbness in his arm, and tingling running up and down his head issues.  MM seems to help tremendously with the swallowing - within seconds his voice is good and his muscles relax.  Nothing seems to help the numbness and tingling.  Our radiologist says its not caused by radiation but I don't think I believe that's right.  

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

by Dlynn1210 on Wed Jul 11, 2018 08:07 PM

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I am 11 years out (diagnosed with tonsil cancer in 2007) and the one thing I have found to work miracles for my swallowing issues are Rigid Esophageal Dilations.  As I get older, they are required a little more often but they are on an outpatient basis with almost immediate results.

I had three dilations post treatment in the years post treatment but I was unaware that there are two types.  Then I moved to FL and was told that ENTs didn't do dilations in FL - I later found out that was absolutely wrong.  A GI doctor did a Balloon esophageal dilation on me which did absolutely nothing to help with my swallowing.  In fact, the GI doctor tried to convince me to let him insert a feeding tube.  After being on one for a year post treatment, there was no way I was going back to one.  I knew the three dilations I had in IL were sucessful and began to question why this one wasn't.  That is when I began to find there are two types.  The GI doctor had told my husband that I would be on a feeding tube for life.  Two weeks later I found an otolaryngologist who was experienced in cancer.  He did a rigid esophageal dilation and three days later I was eating without a problem.

I also have 'tingling' running up the right side of my neck and face (tumor was in the left tonsil).  I also believe the tingling is due to the radiation - and have seen something referring to this on CC.

Diana 

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

by MDyogi on Wed Jul 11, 2018 08:22 PM

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Diana, thanks for that information.  My husband's cancer was in both tonsils, but more in the left so that's where most of the radiation was focused - and that's where the tingling is--he says it's like ants running up and down his head and neck, under his skin, which I just can't imagine how bad that must feel.  It seems to be getting worse - we can power through the muscle cramps and they myokymia he developed that pulls his muscles in all different directions with MM; the tingling doesn't seem to respond to anything.  I'm just so fearful about the future...  

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

by Dlynn1210 on Wed Jul 11, 2018 09:28 PM

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It is getting worse as it used to be sporatic coming for short period every few days and then to every day for short periods now it is with me almost constantly.   It seems to be worse at night and ifI lay on my right side, the tingling eases up some.  I need to look up what someone had called it but it appeared to be nerve damage which makes sense.  

I am going look into it a little more as it is with me so much now.  I plan on asking my otolaryngologist about it at my next visit.  He did his fellowship at Stanford in head and neck oncology so he has seen a lot of the aftermath of radiation.  

Diana

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