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Brian Hill, Dani1972, Pogi87
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Original Post (Thread Starter)
by steve l
steve l
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
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by JoePeg1
JoePeg1
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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by steve l
steve l
Hi Tristeve here again. I just read the recent posts and yes, these long term side effects truly stink! I have had a PEG for 18 months now and it is truly a life saver. I must have has aspirated pneumonia 6 times. Then a doctor told me if I don't get a PEG, I will die. Hard truth. These days I am "OK". 95% goes through the PEG. I try to eat and drink a little bit every day, but that may stop in the near future. BTW, as Brian suggests, I do blend my own food, more nutritious, better for me. So I am OK with being a "Tubie" what I really hate is my speech. One on one, in a closed quiet place I am OK, but forget it in a group and I really struggle on the phone. Often just impossible. All that being said I remind myself what my ENT said......it bears the alternative!!!! So, yes, my life has changes so much, but I am still moving and trying to accept the New Normal
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by Brian Hill
Brian Hill
I was about eighteen years out from pre IMRT Radiation when my swallow went. Nerve damage from the radiation. It’s largely systemic, called polyradiculopathy. This is scatter radiation to the cervical spinal cord caused. Of course everything in you body is downstream from that point, and I and many others have these symptoms with our speech issues, swallowing disfunction or dysphasia, and then the distant issues started like numbness in my toes, which became my whole feet, and now a couple years later that is extended up to my knees. I’m still walking as I have some proprioception left, but it’s an odd feeling. There is occasionally some associated nerve pain with all this which is tolerable when it occurs without meds. This is all part of a syndrome called dysautonomia which has other nerve complications. You can read about it in the complications of treatment section of the OCF website.

Included in the issues are widely variable blood pressure, which is problematic with extreme lows and highs. Many of us had our necks radiated as we had impacted nodes there. In the carotid notch there is a group of nerve fibers that are baroreceptors, and they tell your body what you blood pressure should be. When destroyed by the radiation or surgery your body has no idea what the blood pressure should be. So it swings all the time from low to high. This is baroreflex dysfunction. All these issues are radiation induced. It is not uncommon for a person to start with one, and have this over years expand into this constellation of issues.

So speech and swallow are central parts of this. There are no treatments that I am aware of that contact and correct this. Just alternative ideas. Permanent PEG tubes are common to avoid repeated aspiration pneumonia, which will eventually become antibiotic resistant and deadly. So this is not something to think you are going to live with for years. For those that end up there I would be happy to help you navigate eating normal blended foods for optimum nutrition and health, not that canned crap from the pharma companies, through you PEG which I have recommendations for as well. Having tried various types and have now found one which you can replace yourself easily and painlessly at home, and doesn’t dangle and be a constant problem. I can give you sources to buy them online as well.

I gave up decades of lecturing at cancer conferences and universities as a result if all this, no one can understand the voice I have today. I’m permanently nothing by mouth liquid or solid. I’m told by numerous neurologist doctors that I work with through the foundation that this will continue to decline as the myelin sheath on my nerves continues to degrade from the radiation two decades ago. That by the way also created osteonecrosis in my mandible requiring bone from my leg to be moved to replace the dead bone in my jaw. That was a big deal 9 hour surgery. The first attempt failed because of the radiated blood vessels in my neck and a week later it was redone with a different approach. I’m happy to answer any direct questions. Because if my work load at OCF I’m only on the board a couple times a week, but I will try and answer any you have. Brian
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