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trouble swallowwing

Dr.Ed
Posts: 22
Joined: Jan 2013

Hi, I'm new here although I have posted some responses. I had BOT and Tonsil and Throat  stage IV diagnosed last dec which (so far) has responded to 3 courses of chem, 35 rads, and modified neck resection to remove about 25 lymphnodes. I had a real rough 2 months with pain, nausea and lots of mucus. I had a feeding tube but still lost 40 pounds. I had atough time getting back to being able to swallow and eat. I had 2 esophageal dilations and that helped but apparently the muscles of my tongue and the back of my throat don't work well enough to close off my trachea, so when I swallow alot goes into my trachea and I have to cough alot. I've been (only half heartedly) doing excercises but was told I could possibly do intensive PT that would last about a week and it might help. Have any of you had this experience or this intensiive PT.. any thoughts  Thanks for being there all...Ed 

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

of treatment...it seemed even the smallest amount of water would manage to get into the wrong pipe.  It sounds to me tho, that you really should go further than "half-heartedly" doing your exercises....and that you'd probably benefit greatly from the PT from a therapist.  You don't want to aspirate your food or drink...it's dangerous!!  It sounds like they already took out your tube, so you really do need to get back into the game.  A week's worth of intensive PT isn't much after all you've already been thru.

p

Dr.Ed
Posts: 22
Joined: Jan 2013

yes my tube has been out for a while, and I'm trying to eat something daily. I can drink lots,and have gained weight. I'm going to go ahead and at least talk to the PT people and plan to pursue it

Thanks again... Ed

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

I too was BOT stage III (one lymph node) and I had my feeding tube for 7 months.  My last tx was in Jan 2012.  I did not have surgery or platinum chemo...just erbitux and radiation.  I lost 70 lbs during treatment and to date have lost a total of 90lbs.  Only about 3 weeks before my feeding tube was removed was I able to eat.  I did not have the dialation you speak of...and at times I still cough after swallowing quite a bit.  I don't know if it is bc I try and eat too much too fast or other reasons.  I also never had the PT you speak of ....not to sound like mother hen here, but do those exercises they speak of!!! :)

Keep us posted and I'm sure someone will come along with similar experience.

 

Best,

 

Tim

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Ed, Ed, Ed......

Listen to Phrannie !!  and if Tim doesn't want to be the mother hen ....then I will be !

Get to P.T......actually RUN don't walk to the therapy.  If you buck up and do the P.T. now, it could save you from a lifelong attachment to a feeding tube.  Because if you can't get enough nutrition by mouth by yourself, a second tube is in your future. 

So consider this a kick in the pants......as Phrannie says, after all you've been thru already, the P.T. will be the easy part.

You will be surprised at how much it helps and you want to get as much of your pre-cancer normal life back as possible.  If it turns out that the P.T. doesn't do the trick, at least you will have tried everything.

So JUST DO IT.

And good luck friend !

 

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

this is something to do the full court press on.  What happens now dictates the course of the rest of your life, so get after it.  Swallowing therapy really does work, and practice practice practice  at home helps more.  Ed, between my radical surgery to reconstruct the floor of my mouth, and the two complete sets of radiation I experienced, my swallowing  mechanism has absolutely caught hell.  I'm a year out from my second  rads now, still marginal but no longer choking on everything.  My diet is mostly liquid, because the solids are much harder for me to handle.  Still, I am able to injest enough calories to avoid a permanent PEG tube, at that's good enough for the moment.  it's all compromise, of course, but I'm very happy I have been able to avoid the next step.  Keep after it, my friend.

 

Pat

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

Hi Ed,

There's some sage advice in the above posts. Part of my "team" is a language/speech pathologist that will assist me during my journey. I also have a PT for the physical side effects of the neck dissection. I have about 6-7 exercises I have to do three times a day to regain mobility and reduce pain from the neck dissection as well as swallowing exercises to make my throat muscles do what they're supposed to do. It's a very strange and humbling feeling not to be able to do something you were able to do only hours earlier and a side effect I didn't anticipate. It's not fun nor pleasent to do the exercises but I'm doing it. I have much more of a challenge ahead of me as I head into treatment but I'm bound and determined to beat this before it beats me. Besides, I love to eat too much ;)~

Seek out assistance as soon as you can. Quality of life is so important. 

"T"

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