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 Rastuspristl on Wed May 01, 2013 06:32 AM

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On Apr 25, 2013 5:32 AM Sdurnell wrote:

Throat dilations are what have helped me the most.  I had about 8 or 9 the first year after treatment, and several more in the year+ since then.

And if it's the actual swallow mechanism itself, speech therapy is the way to go.  You don't want to mess too much with this, as you can easily develop pneumonia if you are aspirating food or liquids.

Susan

Hi all. I am 11 years out, having had neck disection, followed by a joint radiotherapy/chemotherapy regime. I still suffer major problems with speaking, eating and swallowing. Have continual episodes of aspirating leading to constant chest infections, including pnemonia. Have tried speech therapy etc with no luck.

Good luck to our fellow survivors.

Rastuspristl.

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

by Slowlane on Thu May 02, 2013 02:35 AM

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I'm 30 months out 35/3 with RND.  Just about everything is better except for hoarseness.....seems to get worse every day.  Seeing a new ENT next week.    I have always had a speaking disability...I was born and raised in Alabama.  Roll Tide,  Slowlane

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

by lea18 on Mon Sep 16, 2013 03:51 AM

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My Husband is 5 years out from his second cancer which involce radiation as the primry treatment. A couple of months go we realised that his throat had swelled considerably ( we think due to a bout of vomiting from food poisoning) and he  has been having difficulty breathing normally, eating and swallowing. We have recently seen a group of specialists at the same time and they have suggested hyperbaric chamber treatment for 3 weeks which we are going to do. Not sure if this has been raised with you or not but it may be a possibility. Until we've gone through it we won't know for sure if it makes any difference - we hope so. 

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

by Mary53 on Fri Sep 20, 2013 09:54 AM

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I am 6 years out and cancer free but have found my issues getting worse with time. I still have my feed tube as radiation killed all the swallowing muscles  ( did the swallowing and speech thing), my mouth doesn't open very wide (like lock jaw, a surgeons and dentists worst nightmare), sinus issues getting worse and voice at time is terrible. Heaven forbid I catch a cold because I'm lucky I can be understood at all let alone breath.It seems there isn't much we can do about it. I have tried a few things with no success, so have just accepted it as part of my life.

On the plus side I am blessed to still be alive as I know many that never had any time.On the once and a while days I get depressed because I have so many issues I thank god I'm still alive and able to travel and spend time with my family and friends.

Good luck with trying something new and would love to hear if it works.

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

by jagerwin on Sun Sep 22, 2013 01:05 PM

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sorry to read about your problems, although nice to read 13 years. I'm 4 1/2 out, and have only had minor issues compared to yours. I have to tilt my head/chin down a bit when I swallow, or else I aspirate. I can at times be looking straight across the table at someone, and still swallow, but it's risky. I think most risky b/c then I have a tendency to forget and I'll try and talk to that person, and that doesn't work. But again, when I tilt say 10-20 degrees and then swallow, I do fine for the most part. it's still a small struggle, but I don't choke. I have scar tissue and have had one dilation. My voice is mostly Ok, although I can't go on very long at a party where I have to raise my voice, and no surprise I can't sing like I used to.

My lower right jaw reacts as mentioned above, like "lock jaw". I agree, tough for the dentist. But I've also figured out that I can use my hands to gently pry my mouth open and then let go and I'm usually ok. It's when I use the jaw muscles to do the opening that it just freezes, and hurts! Then I have to push/pull/massage it to get it to "unlock".

It seems that for much of this stuff, for now it becomes a management plan, versus any sort of big fix.

I have had an issue with food quanity for years, and feelng ill/headache if I eat too much and it doesn't take much; I can't more than 3/4 cup of anything without feeling like I just had a Thanksgiving meal, so I have to plan carefully every trip out (and I travel a fair amount). Opinions have differed but the ultimate is to scope and I have grown so weary of IV's and anesthesia that I've avoided this but decided to have it done next month. I and one of my doc's feel it's from when they put the feeding tube in and moved my stomach, changing the "route" and how food enters my stomach. Not sure they can do anything about it but we won't know till we assess.

I am amazed at what we have to go through daily, just to get through another day etc. Most things have changed and learning to adapt/improvise/overcome has been both interesting and frustrating. I hope you find some answers and satisfactory resolutions.

John

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

by Sdurnell on Mon Sep 23, 2013 04:01 AM

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John,

I recommend the scoping highly.  I could not swallow at all several months after ending treatment, and had almost made peace with being tube fed forever.  But regular throat dilations have made all the difference for me.  I have had quite a few over the last two years, and am now down to three times a year.  All are done outpatient, and all but the first two in the doctor's office under sedation.  Maybe something like that will help you as well.

Susan 

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

by smb22 on Mon Sep 23, 2013 09:22 PM

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Thanks for the advise. I am going to talk to my doctor about next time I see him. I was told that it might cause additional scare tissue and did not have it done. But know I don't see the logic to that arguemewnt since I am completed shut at this point. I am very happy it is working for you.

God Bless

Steve

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

by marymc on Tue Sep 24, 2013 12:13 AM

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I am a bit confused, here.  My husband is close to 1.5 years out.  He did not have surgery (35 radiation + 3 cisplatin), and he has not had swallowing or speaking issues at all.  Are you saying that these may develop as time goes on?  Please say it ain't so.

Mary

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

by jagerwin on Tue Sep 24, 2013 01:57 AM

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All I can tell you is mine were immediate, from the 35 radiation treatments (I have other issues from the cisplatin; had no surgery). Some of them got better, others remain the same. My main reason for the scoping next month is my upper GI - I've learned to deal with the throat stricture. But my doc can check it while he's in there and be prepared to do another dilation.

As they say, everyone reacts differently......

John

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

by Sdurnell on Tue Sep 24, 2013 03:11 AM

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On Sep 24, 2013 12:13 AM marymc wrote:

I am a bit confused, here.  My husband is close to 1.5 years out.  He did not have surgery (35 radiation + 3 cisplatin), and he has not had swallowing or speaking issues at all.  Are you saying that these may develop as time goes on?  Please say it ain't so.

Mary

Mary,

Radiation affects us all a bit differently.  In addition, the type and position of the radiation differs, and that can cause varied results.  I had a modified radical neck dissection and then 25 radiation sessions, no chemo.  But the radiation was not targeted at all, as they never found the primary cancer.  They had to radiate everything.

And despite having less radiation than most, my throat closed completely within 5 months of finishing treatment.  So mine did get worse, but now after many dilations it's better.  There was nothing wrong with my swallow, but I cannot control my voice well enough anymore to sing.

Susan

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