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 Janey6 on Wed Jul 25, 2018 02:33 AM

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On Jul 25, 2018 2:22 AM EDWARD123 wrote:

there are always long term radiation  side effects ...as i  have had nw going on 2  and a half yrs..u  almsot have tolive with them ...cause they are [INCUREABLE  ]

“always long term side effects to RT”......Yes Edward, but this conversation is addressing a treatment for those side effects. The treatment is called VITALSTIM. It is a mechanism to stimulate swallowing muscle and surrounding area to aid in swallowing. Google it. A speech therapist that is specially trained can do this treatment. So folks have had great success others not so much.

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

by cagy2 on Wed Jul 25, 2018 02:48 AM

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I am 8 years out and still have problems with swallowing (14 dilations), balancep problems and reduced neck movement.  But it's a sure way to keep weight off.  Whole eating system is kaput!  Taste is affected so diet changes, but I'm still alive and seem better off than many posting here.

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

by Dlynn1210 on Wed Jul 25, 2018 03:51 AM

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I was given a 50/50 chance of survival IF I had radiation and chemo so while I have side effects from the radiation I am thankful to God for over 10 years of being cancer free. Diana

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

by Rhubarb25 on Wed Jul 25, 2018 09:03 AM

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I am the same. Speech, tongue spasms. Swallow and my right arm is terrible. I am now on the drug Tegretol, which is for epilepsy but they put me on it, and it works wonders. It stops my tongue from the spasms and allows me to speak with no problem.

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

by tristeve on Thu Jul 26, 2018 11:11 PM

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Well I use to be pretty active on the board, kind of stopped for a while. I am 9 years out and still doing well. This post did put the truth out fron for me. I do continue to have eating issues. I can not swallow a pea with out a slug of fluid, in face, I can eat most anything as long as it is a small bite and a slug of fluid ( IPA beer works best) I have a couple of dilutions a year but mostly I just have to eat slow and steady and drink. I did have a swallowing test several years ago. My neck muscles took a pounding on the radiation. And the PT suggested that I do neck exercises. So I did get a wrestlers head strap and lift weights almost every day. It also helps with the fairly constant pain I have in my neck. If anyone wants more in depth info PM me. Life long change! New Normal! I remember talking to my doc about 6 months after treatment saying I can not wait to get back to the way I was .........She said, Mr Larson, you will never be the way you were! Best to all!

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

by Janey6 on Fri Jul 27, 2018 01:45 AM

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On Jul 26, 2018 11:11 PM tristeve wrote:

Well I use to be pretty active on the board, kind of stopped for a while. I am 9 years out and still doing well. This post did put the truth out fron for me. I do continue to have eating issues. I can not swallow a pea with out a slug of fluid, in face, I can eat most anything as long as it is a small bite and a slug of fluid ( IPA beer works best) I have a couple of dilutions a year but mostly I just have to eat slow and steady and drink. I did have a swallowing test several years ago. My neck muscles took a pounding on the radiation. And the PT suggested that I do neck exercises. So I did get a wrestlers head strap and lift weights almost every day. It also helps with the fairly constant pain I have in my neck. If anyone wants more in depth info PM me. Life long change! New Normal! I remember talking to my doc about 6 months after treatment saying I can not wait to get back to the way I was .........She said, Mr Larson, you will never be the way you were! Best to all!
A wrestlers head strap!!!? Does that come with instructions? Kidding......I can figure it out but I never heard of anyone trying that.

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

by tristeve on Fri Jul 27, 2018 05:28 AM

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Long story, but my neck was so weakened by the radiation i had pain/strenght problems. A PT suggested neck exercises. . After a while I bought the harness. It goes over my head and I attach weights to it. Then, I just do left/right front back moves. After about 6 months I was able to eat a bit easier but mostly stopped the 8 on 10 pain. Really good!

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

by Shirleyperez on Fri Jul 27, 2018 02:04 PM

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On Jul 25, 2018 2:33 AM Janey6 wrote:

On Jul 25, 2018 2:22 AM EDWARD123 wrote:

there are always long term radiation  side effects ...as i  have had nw going on 2  and a half yrs..u  almsot have tolive with them ...cause they are [INCUREABLE  ]

“always long term side effects to RT”......Yes Edward, but this conversation is addressing a treatment for those side effects. The treatment is called VITALSTIM. It is a mechanism to stimulate swallowing muscle and surrounding area to aid in swallowing. Google it. A speech therapist that is specially trained can do this treatment. So folks have had great success others not so much.
And long term is long term. After 28 years of my last treatment, I developed a severe speech impediment due to my failing upper palate. 28 years!!! But I ate most things, not well, but I wish I could return to that stage. I got breast cancer 26 yrs later and radiation which was a piece of cake compared to throat radiation. I now have gotten throat cancer again, and my results are good, but I wonder if the side effects will do me in. Canot swallow at all, thick mucus, stiffness in the neck, etc. 4 mos after radiation and it is getting worse instead of better. Has anyone ever been told they are not a candidate for dilation due to age,second throat cancer, etc.?

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

by Sdurnell on Wed Aug 01, 2018 03:51 AM

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Dilations were a miracle cure for me.  Of course, not a cure for everything, but they got me eating and drinking again, which is pretty darn good even if I can't eat everything everyone else can.

I can put away ice cream as well as anyone!

Best of luck to you.

Susan

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

by MDyogi on Wed Aug 01, 2018 09:43 AM

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On Aug 01, 2018 3:51 AM Sdurnell wrote:

Dilations were a miracle cure for me.  Of course, not a cure for everything, but they got me eating and drinking again, which is pretty darn good even if I can't eat everything everyone else can.

I can put away ice cream as well as anyone!

Best of luck to you.

Susan

My husband's having a dilation for the first time in two weeks.  What should we expect?  Do they hurt and are they dangerous at all?  I'm rather confident about his doctor being good at this but it does seem like a great unknown. 

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