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 Mary53 on Tue Sep 24, 2013 03:26 AM

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I also had no surgery, 35 rads and 3 cisplatin for base of tongue cancer but when done the treatment could no longer swallow and still can't today 6 years later .My voice and sinus issues from treatment have worsened over the years though.

I can't say that he will have any issues.Every individual is different, hopefully he'll stay issue free.

We were just stating what our issues have been like over the years.

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

by lornal on Wed Sep 25, 2013 11:32 PM

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I am new to CancerCompass.  I am 6 years out of treatment for tonsil cancer.  I had the tonsilectomy, neck dissection, chemo (cisplatin), and radiation.

Last summer I started having a sore throat, and difficulty swallowing.  Tests did not show anything.

Then in January, some of my pills started growing.  I had some of my meds changed to be smaller pills.  Then in April, I started choking on my meds.  Again, all tests showed nothing, and I was sent to a GI. 

I have had 8 dialitions, which tend to help for a few days.  That ended at the begininng of August, because the Dr stretched as far as the equipment would go.

Since then, I have had my medications changed again so they are smaller.  And now, I have lost my voice, and am short of breath when I speak.  During all this, my throat has hurt constantly.

Yesterday, I was referred to a different ENT.  He scoped my throat, and determined, due to the radiation in 2007, my vocal cords do not open completely while breathing, and do not close completely while talking.  Probably the source of most of my pain.

Tomorrow, I go for another stretching, and then I'll be working with my new doctor to address the voice, swallowing, and pain issues.  I hope they can be resolve some or all of the issues.  At the very least, I want to prevent my vocal cords from getting worse and blocking my airway completely.  Also, some pain management help would be great.

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

by paisley7 on Fri Sep 27, 2013 11:20 PM

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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

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

by lornal on Fri Sep 27, 2013 11:50 PM

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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!

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

by smb22 on Sat Sep 28, 2013 12:03 AM

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God Blesss you friend. I have had all the same issues. I am 10-11 years out and it just keeps getting worse. Radiation damage is something rarely discussing during the initial treatment. Most of us are so anxious to just be ride of the "cancer" that we let them do anything they suggest to solve the problem. I did double check with several other institutions before I had my treatment, but the all said what I was getting was the proper protocal. My current onconlogist has indicated that the massive amounts of radiation with no nutritional support or a feeding hydration was "criminal". Too late now but so be it. I am alive and I am grateful. I have had a fedding tube for over three years now and I have no issues with it. In the beginning I had a lot of severe muscle cramps but over time it has really become second nature. It is soooo much easier to take care of yourself with liquid food and any meds then trying to swallow which has become completely impossible now.

If anyone who is reading this is just beginning your treatment make sure you dicuss, shinking tumor first with chemo, then surgery or radiation. Also get a feeding tube before you start so you can stay hydrated and keep you weight and strength in tact during the treaments. This is what my new oncologist told me and he is one of the best.

My heart goes out to everyone facing these issues anew and from a later perspective.

Steve

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

by lornal on Sat Sep 28, 2013 12:28 AM

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Steve, were you able to have liquids and soft foods when you first got the feeding tube?  Did you have your throat dilated before and/or after?  Can you at least swallow your own saliva?

Back in August, I don't think my doctor was expecting to see me again.  But, he was surprised how bad it got.  He said he would still do the dilations.  I don't want to get to the point I can't swallow any liquid (especially my own).

THanks for letting me know I'm not the only one getting the tube so far out.

Lorna

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

by smb22 on Sat Sep 28, 2013 02:49 AM

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Loma, with the feeding tube liquids work fine but anything thicker than cream based soups requires that you push the food into the tube with your feeding implements.

Unfortunately at this point I cannot swallow at all! I was told that if I had dilations it could cause even more scar tissue to develop so I didn't do it. But I am having second thoughts about it now and intend to investigate it at my next doctors appt.  I am very sorry to hear that you have so much trouble but I know how you feel. My swallowing issues accelerated after I had my jaw replaced. It went from bad to worse very fast. All the doctors said it is scar tissue from radiation but I think it was the combo. I really did not have a choice. I developed osteoradionecrosis from excessive radiation and one day while eating a fresh blueberry my jaw fractured. It was such a shock. If I had know that replacing it would have accellerated by swallowing issues I would have tried to hang on for as long a possible before having that intensive surgery.

The thing that bothers me even more than not being able to swallow is not being able to speak clearly anymore. I cannot use a phone at all and my wife and I are struggling to communicate. As a result I rarely speak now. Speech therapy worked for a while and I think is was useful but hard to practice, because it requires patience to slow everything you have learned during life to speak very very slowly and deliberately.  I use an iphone app called Speakit to help me when I am on my own in a store or where ever and it works pretty well. The app cost a whole $1.99

I am lucky as a Christian as I have reserve perseverience to help me stay focused on the positive. But I would be remiss if I claimed that it was easy. I took myself off most meds last year because I felt they were altering my persona and I am glad I did. Pain and discomfort just becomes like the alarm on a digital watch that goes off regularly. After awhile you don't even notice it.

My prayer for everyone on this message board it to careful and diligent to investigate your options and give the rest of it up to God.

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

by Mary53 on Sun Sep 29, 2013 02:23 AM

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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 !

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

by paisley7 on Sun Sep 29, 2013 03:51 AM

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omg is this why my onc wants a chest x-ray yearly?

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

by lornal on Mon Sep 30, 2013 12:17 AM

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I think it is standard procedure to get the chest xrays after head/neck cancer.  My radiation oncologist order it for me a couple of years ago.  Now, my primary is taking care of it yearly.  Since I had to go to the imaging place, I finaly had a mamagram too.

All clear. 

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