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#200872 07-10-2021 01:12 AM
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JoePeg1 Offline OP
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I finished radiation and chemotherapy 1/28/2021
I had no adverse symptoms till the last week of treatment....this is now July and when last seem by my ENT(EAR, NOSE AND THROAT)...He stated " I would never speak normally...or be able to eat and drink by mouth"......I eat with a peg tube.....I miss having a beer with my buddies....is it really such a bad thing?....when does the jaw pain stop?.... Range of motion?...does steam room and whirlpool help?... Anyone heard of acupuncture to reactivate the salava glands?....sorry so many questions,I'll blame it was n being new

Last edited by JoePeg1; 07-10-2021 01:14 AM.
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Hello joe,welcome to our group right place for support nothing to feel sorry about too many questions, you didn't mention what kind of surgery you had and what was diagnosed maybe someone went through similar treatment can answer you better,I had peg but for short time during chemo and radiation I still have dry mouth dry mouth could get better in my case I everyday was little bit better.good luck.

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JoePeg1 Offline OP
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I had chemotherapy and 37 radiation treatments...small cell on my tonsil....finished treatment end of January 2021

My speach is so poor...I hope it comes back...the Dr hasn't given me much hope....but I'm going to try to prove them in correct and swallow and talk more normally....I totally want to eat food again....and not be embarrassed with how screwed up my speach is.

Thank you for your kind words and warm welcome.

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Hi Joe,

Have you been given a barium swallowing test? Has the doctor explained why he thinks you will have to be on a peg permanently? My husband was unable to swallow after radiation because the scarring had closed his esophagus. It was quite the shock for us. The radiation oncologist said he could not do anything for John. The same happened with a GI specialist that he saw. Eventually, John found an interventional radiologist who tried a new procedure with him and managed to open up his esophagus. This was followed by five sessions of dilatation. John was able to eat very soft food, like poached eggs. He was also able to drink. However, red wine no longer tasted the same. John was able to do this because he kept up with his swallowing exercises all through the months when he could not swallow. Unfortunately, the swallowing muscles failed and John developed silent aspiration which put him in hospital with pneumonia.

As far as I am aware, there has not been another patient who has undergone the same procedure of opening up the esophagus. I am in Canada, maybe you can ask your doctor to consult with John’s doctor. If that’s the way you want to go, please send me a pm and I will give you then doctor’s name and hospital. The interventional radiologist was going to publish a paper on this, and I gave him permission to discuss John’s case. But I don’t know if they have actually done it.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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JoePeg1 Offline OP
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Thank you so much for great reply ..I totally appreciate it....my problem is a he radiation scared the flap that closes when you swallow so food doesn't go in your lungs......there is a piece missing and it not something that will regenerate....so that is my problem......the barium swallow test showed the missing piece and showed how the liquid headed for my lungs......I hope the swallow specialist will have some ideas


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