Can't swallow from treatments for Squamous cell cancinoma canceer of the tonsils and tongue

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Can't swallow from treatments for Squamous cell cancinoma canceer of the tonsils and tongue

by KevinH on Mon Mar 06, 2017 07:19 PM

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I'm 4 months out from chemo and radiation for my tonsil and tongue cancer. Radiation did some damage, destroyed left vocal cord, killed a lot of good cells and has caused a bunch of swelling. I've had a peg tube in for feeding for the last 6 months cause I've lost my ability to swallow. I have to carry a cup and tissue around everywhere I go cause I can't even swallow my own saliva. Doing therapy now but it's not much help. Have heard fron 2 Dr's that I may depend on this tube the rest of my life. I can't accept that, I want to eat or drink something so bad I can't stand it, So tired of this! Has anyone out there gone through this and is now able to eat and drink? Would love to talk to someone who has, to know what it took.

Thanks so much.

RE: Can't swallow from treatments for Squamous cell cancinoma canceer of the tonsils and tongue

by KyGal_KY on Wed Mar 08, 2017 09:42 PM

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Every person is different.  After my radiation treatments, it was like my tongue/mouth/throat didn't work so I understand what you are going through. 

First, have you asked the Dr's for something to dry you up?  I was given prescription for the patches you use for sea sickness.  Also gargling with salt water and I seem to remember gargling with hydrogen peroxide!!

What kind of therapy are you currently doing?  Massage?  That's great! But you need to ask your Dr to refer you to an Eating Specialist!  I was like you, barely able to swallow a teaspoon of water.  I had to push myself to do what the eating specialist wanted me to do and it was the hardest thing I have ever done.  I worked with her for about 2-3 months and I was finally able to start getting enough calories that they would take my tube out.  It did take several months though so don't be discouraged. 

But just so you know reality, there are some that can't get off their tube feeding................... but you sound like you have the determination to succeed!

RE: Can't swallow from treatments for Squamous cell cancinoma canceer of the tonsils and tongue

by chef06 on Wed Mar 08, 2017 10:33 PM

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You are so fresh from treatment  you have a long way to go i had peg for 6 mnth  after treatment  but keep trying to eat soft foods while you got peg it will get better it just takes a lot more than 4 months 

Take care you will get there 

RE: Can't swallow from treatments for Squamous cell cancinoma canceer of the tonsils and tongue

by Questforfish on Thu Mar 09, 2017 01:29 AM

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Tonsil cancer here, had peg for three months, but kept swallowing liquids.  Now am 10 months out, but I still have problems eating everything with no saliva yet.  Anyway, I've read on here a long time and I've often read about those with throat, tonsil, tongue cancers, having a treatment that stretches your throat for those who can't or have trouble swallowing due to a shrinking esophagus.

Post this same problem on the head and neck cancer board on this site, and I bet you get a lot of responses and advice.  You're not alone in having this problem, so please try that :)

Prayers are with you and all others who suffer the collateral damage from chemo and radiation!  I love and respect you all!

Questforfish

RE: Can't swallow from treatments for Squamous cell cancinoma canceer of the tonsils and tongue

by Sdurnell on Thu Mar 09, 2017 07:04 AM

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Hi Kevin.

When I was four months out of radiation I could not swallow my own saliva, the very small amount that I produced, at all either.  For months I got every bit of my medication, nutrition, and hydration through my tube.  I tried speech therapy, but it didn't help at all.  The swallow study showed I aspirated on every texture and thickness.

I eventually came to realize that being on a feeding tube permanently would not be the end of the world.  I took a cross-country trip, flying one way and road tripping back, and that made me understand that living with a tube would be OK.

Then my radiation oncologist asked my ENT to do a throat dilation.  He discovered that my throat was completely closed, something neither he not his older partner had ever seen before.  He could not get it open, but referred me to a GI who, after a number of dilations, was finally able to get my throat open enough that I could eat by mouth again.

That was over five years ago, and I have been able to eat, although with some restrictions, ever since.  I go in three times a year to get the stricture opened, but most people who need this done only require one or a few procedures.

I am now cured of H&N SCC and happily go in every four months or so for my dilations.  I suggest you look into the possibility of having one or more dilations.

All the best to you.

Susan

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