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 lornal on Mon Sep 30, 2013 12:28 AM

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THis not being able to talk is only a week or so old, so we'll see how it goes. I did get that app for android.   It doesn't sound too good, but, I lost my hearing from the chemo, so maybe it sounds better for someone with full hearing.

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

by paisley7 on Mon Sep 30, 2013 05:19 AM

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lornal-yay for the clear mammo! My onc mentioned that head/neck could possibly resurface an incidence in lungs of patients w/ a past of cig smoking. Not proud to say, but I was a smoker years back. Anyone, tell me more abt scar tissue swelling, growth & & & moving to lungs?! wth? Even if we're deemed "clean"? good grief

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

by Sdurnell on Tue Oct 01, 2013 05:37 AM

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On Sep 27, 2013 11:20 PM paisley7 wrote:

john, et al:  I'm 4 yrs out tonsular, uvular, pharyngeal, nodes scc, had chemo & radx35. I'm new to this site, do we just compare & confide & bitch? Ok, here goes, why is my tummy so weird, how interesting that your doc mentioned the re-route of stomach w/ pet tube, this makes sense-does anyone else get a cramp in stomach tube-site when they bend over? My jaw hurts when I try to eat a sandwich or a banana & there are other problems w/ that hindrance, not mentionable, perhaps how I got in this place. My ENT gave me tongue depressors to do jaw exercises w/, but didn't work. It was so painful, maybe I didn't give it a fair shake. Why are my sinuses getting worse instead of better as far as congestion goes-it's scar tissue? I feel as though I've stuck my head in a bag full of pollen. Did chemo do a number on my emotions circuit box, why can't can't I cry? Good bye thyroid, hello 4 pills aday @ $90/ month. And, yes, how embarrassing to go out to eat & choke audibly, eat as slowly as an invalid & as minimally as an infant. I'm going to try your head tilt for swallowing, ty. Yes, I'm glad to be alive, certainly, but it has come w/ prices. I used to be a soprano.   thanks, good luck & hang in there all, beth

Hi Beth.

You and I share some of radiation's effects.  I also can't cry.  My (male) doctors don't see the downside of this, but I knew something was pretty wrong when, a few months out of treatment, our cat died and I was dry-eyed.  Then the next year it was my mother.  Creepy.

My thyroid is fading as well, and I take a lot more than 4 pills a day (to be fair, not all due to the cancer treatment, but the aspirin for damage to my carotid arteries, the two reflex drugs "just in case," the sucralfate to soothe my throat after all the dilations, and the thyroid pills are all from my treatment)

And, while I was never a soprano, and my alto had even faded some, I have no problem singing tenor or ever lower anymore.  When I can sing at all.

Guess those are small prices to pay.

Susan

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

by Sdurnell on Tue Oct 01, 2013 05:45 AM

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On Sep 29, 2013 2:23 AM Mary53 wrote:

Wow I didn't know that the scarring would continue. I had my feed tube since treatment( base of tongue, stage 4, 35 rads and 3 cisplatin) as I couldn't swallow after. I only found out last year ( 5 years out) that I had scar tissue on my lung. Its sort of scary knowing the scar tissue can spread and wonder what damage that will do!

Oh well I'll count my blessing that I'm still here !

Mary,

The upper parts of the lungs are radiated during treatment, so that might be what caused the scarring.  My RO showed me on the PET, and says it is just a small part of the lung and shouldn't affect function, even though I'm a mild asthmatic.

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

by Sdurnell on Tue Oct 01, 2013 05:50 AM

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On Sep 27, 2013 11:50 PM lornal wrote:

I had my 9th throat dilation yesterday.  It had been 8 weeks since the prior one, and ALL progress was lost.  In conjuction with the vocal cord/breathing problems popping in the last few weeks, the doctor is recommending a feeding tube - 6 years after treatment.  I didn't expect it, but he concerned with my choking on my meds, dehydration, and lack of nutrituion.

After discussing, we decided to do it - it will be done on Monday.

Honestly, this whole radiation scar tissue causing me problems years later caught me off guard.  Only this past April did I find out the radiation scarring never stops.

THe doc wants to get this in before he can't use the type he likes best.

I'm kind of looking forward to NOT having to stress out 2-3 times a day when it is time for meds!

Lorna,

I had 9 dilations the first year too.  Since then not so many.  Many times he had to go back to square one, but it's been about two years now since I started, and I'm finally down to three or four a year.  My GI says there's no way to tell how many or how often I'll need them, so we are just playing it by ear.  I go in next week again, but am feeling hopeful, because I am still not choking on pills (the big ones I always crush, though).  So maybe it's holding better this time.

Susan

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

by slembach on Fri Feb 07, 2014 11:35 AM

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If you could post an update, it would be appreciated.  I am 7 years out from being radiated for the second time and am experiencing a restricted esophagus and airway.  They are talking about a trach or removal of half my vocal cords.  Would like to know how the hyperbaric treatments worked out....thanks

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

by slembach on Fri Feb 07, 2014 11:45 AM

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I am 20 years out from my first cancer and 7 years out from my second, both treated with radiation.  Yes the radiation is the gift that keeps on giving.  I don't want to scare you but no one prepared me.  Everything keeps on shrinking.  My airway is restricting as well as my esophagus.  I am on a feeding tube and have been for 2 years.  Now they want to remove on half my vocal cords or put in a trach to help me breath.  I am looking for alternative treatments.  I would suggest one way to help your husband is to learn swallow exercises to strengthen the muscles in the throat.  You can just google this information or see a swallow specialist.  I tried vital stim therapy and it seemed to help very little.  Keep your throat as hydrated as possible.  If the radiation was to the mouth area, that too can close up.  I have a "thera-bite" that I use to help keep that stretched open.  Keep excellent care of you teeth and mouth and keep moist.   I hope this helps.  As you can see I have been blessed to be 20 years out from my first cancer so while I have problems, I am still here. 

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

by AZLinda on Wed Feb 19, 2014 08:12 PM

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Well, an internet search on "tongue cramping" has led me back to the site that nurtured me through diagnosis and treatment nearly three years ago for base of tongue surgery, bilateral neck dissection and 35 rads! On the one hand, I am sorry to hear about all the latent radiation side effects but am happy there are many long term survivors. I see my ENT twice a year and my oncologist once a year as follow up. Any others experiencing tongue cramps? This experience lasts about thirty seconds and happens a couple of times a week. I am keeping a written notation as they occur now. Linda

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

by pcn17 on Fri Feb 21, 2014 07:30 PM

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Hi everyone. i m 8 years out. every single feback from you all is true. i have experienced it all except dialation, it works tmprarily. it does get all worse but since we all heal differntly will it happen in differnt times. the best thing i am doing that i should have done sooner is filing for disability. this has left us vervy differnt and will only get worse and change the quality of our life more and get more expensive i was so vibrant, i didnt want to belivei could be back.but before it gets harder to prove up to them ppl, do it now. at least do this for yourself. my speech, ears, mucous, peg site , it all ffects ourbody. it isvery depresing. god bless us all. 

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

by paisley7 on Fri Feb 21, 2014 09:38 PM

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pcn17, good luck w/ the disability, you'll need it. Depending on the state you live in, it can be very difficult. If you're turned down, appeal! Also... you hit the nail on MY head w/ the wicked symptoms, onc told me, after 4 years out that they wouldn't get any better...neglected to tell me that they could get worse. How nice-something to look forward to. NOT.

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