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Joined: Jun 2021
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steve l Offline OP
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Hello old friends,
I have been absent for a while. diagnosed with cancer in 2009, rad and chemo treatment and was clear in 2010. Mostly great life since then. Some voice issues and always some small difficulty in swallowing. I did have a swallowing test 5 years back, and DUH, they said I had a difficulty in swallowing. So for many years, I ate like a rat, small bites, always drink. I have also gotten aspirated pneumonia once or twice a year for the last few years. Very easy to resolve...so far, usually a course of antibiotics. Lately the swallowing has gotten harder. My GI said that one of these days I will need my PEG put back in, not great. BTW, I do get dilations several times a year. My upper esophagus has lots of scar tissue and it continually closed down. I am thinking of seeing my ENT and looking into some swallowing therapy. I do read in many threads my situation is not unique, especially after 12 years.

Any hot ideas??? also, I live in Orange County CA, any leads on a speech pathologist???

Other than these minor inconveniences, my life has been good. I still do triathlons and now being retired and taking it a bit easier!!!

Steve


cancer in 2009, successful treatment. 12 years out, doing OK
Joined: Oct 2012
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Joined: Oct 2012
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Steve,

My husband’s esophagus was totally closed by scarring post radiation — to the extent that a GI asked him what he was doing at a swallowing test. Other doctors were more sympathetic. John found an interventional radiologist who managed to open up his esophagus using earth magnets. As far as I know, John was and still remains the only patient who has had this procedure done. That was followed by five or six dilations. It got to the point where he was able to eat poached eggs and some very soft food. Unfortunately, six months later, he was dealt a rather cruel blow — he developed silent aspiration which gave him pneumonia and put him in hospital. This was a surprise to us and to the speech and language pathologist who looked after him as John had kept up with his swallowing exercises through the one and a half years before the procedure. His swallowing muscles simply failed. I believe this is important for people who have swallowing difficulties. The swallowing muscles can deteriorate in function and fail. This will lead to further problems. One SLP explained to me that even saliva can seep into the windpipe and, over time, will cause pneumonia. So, it’s a good idea to see an SLP. The swallowing specialists should be attached to the swallowing clinic at the hospitals. They can talk to you about the thickness of the liquids you can ingest, swallowing techniques and keep an eye on your progress. Yo7 might also be able to find one through your GI.


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.
Joined: Jun 2021
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steve l Offline OP
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things have gone downhill over the last few weeks. I aspirate almost every swallow and my voice is quite weak, so weak I can really only whisper. I saw my ENT the other day. He has referred me to a Dr, at UCLA who specializes in folks like me/us who had severe radiation damage causing swallowing and speech problems. I can not see him for several weeks. I am becoming anti social. I will not eat with people other than my wife, and due to the aspiration, i don't even like having a drink with old friends. I am kind of depressed. I might see my GP this week and talk about anti depressants. I did take Paxil when i was getting "roasted" during treatment. Just some tough times that I need to adjust to. I know I am still a lucky guy, 11 years of few issues, I guess the radiation damage is catching up with me

Steve


cancer in 2009, successful treatment. 12 years out, doing OK
Joined: Jun 2021
Posts: 7
steve l Offline OP
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One ,ore thing to add. I was absent for a few years, new computer, new internet provider, Back in 2009-2007 my sign-in name was TRISteve

I do remember many of the folks here, I think it is nice to be back. It certainly lets me know I am not alone as i go into the new..new...normal

Steve


cancer in 2009, successful treatment. 12 years out, doing OK
Joined: Jul 2021
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I was sad to read your post....I can't swallow period...all food threw a feeding tube...and my voice is so incoherent I feel I should start learning sign language....I ended my radiation treatments end of January 2021 and things have just gotten progressively worse ....I am totally becoming a hermit...I was such a social person before treatment and now that it's over...the worst has just begun...I hope to keep hopes high and hopefully get to swallow again!.... Till then I guess it's Hulu and Netflix will be my close friends

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steve l Offline OP
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hello Joe, I het the hermit thing. I have had many chalanges over the last 12 years. This is mentally the toughest. I am trying to work on it, but as you know, we are a verbal animal. If I get any great ideas i will let you know!!!!

Steve


cancer in 2009, successful treatment. 12 years out, doing OK

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