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

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.

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

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

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

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

Saw your post and we are also returning to this site 12 years later with swallowing problems as the issue.
My husband had base of tongue cancer 13 years ago. Since then, he adapted to the changes in his ability to swallow...gravy on everything! However last year he ended up in the hospital for aspiration pneumonia. This was followed by several weeks of speech therapy. We both thought it was a temporary thing. This year he was back again for aspiration pneumonia. This time a GI doc was called in and the damage from radiation was identified as the cause of his swallowing problems. A JPeg was put in again as a temporary measure. Today the GI doctor did a dilation of his esophagus but was not hopeful about regaining the ability to swallow. The jpeg may be permanent. Needless to say the news was devastating. I want to exhaust all possible options. Does anyone have any options for us to explore? Ideas, suggestions?

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

Hi Brian and thank you for sharing the reality that you have faced in the post cancer phase. I was and have been struck by the tremendous resilience and adaptability of cancer survivors. I believe that it may be these very qualities that earn them the status of survivor.
I am a witness to the struggles but share in the comfort of having the support of others through this site.
This week we are going to some specialists to gather information on what can or cannot be done for my husband. I will write and share the outcome. The radiation treatment changed the shape of his esophagus. It’s really unclear what, if anything, they can do. Thank you for your willingness to offer ideas about the PEG and alternative nutrition. He is doing much better with consistent nutrition but I hope to enhance the nutrition soon. We will be in touch.

This week we did a consultation with an ENT who specializes in swallowing disorders. It was good news and bad news. The bad news was that the PEG is long term. It will ensure that my husband receives adequate nutrition. The good news was that, with ongoing speech therapy, he may be able to do “recreational” eating.

The recreational eating is something I don’t get. Without knowing it is happening, and with no sensation of it, people who have compromised swallowing, usually from physical and neurological radiation damage, will develop silent aspiration and some liquids and food particulate will end up in the lungs while eating and drinking. While the body can clear minor amounts of this, it ultimately causes aspiration pneumonia. This is different than regular pneumonia as it carries additional bacteria into the lungs, from oral sources. This requires different antibiotics to deal with. If it happens and is treated often enough, people will develop antibiotic resistance, and the pneumonia will become intractable and deadly. A famous example is Director Bruce Paltrow who continued to eat while this was happening. He ultimately died in Italy. There is no indication that the doctors there understood the difference in aspiration pneumonia, and it is possible, but unknown if his pneumonia worsened and seemed unresponsive because of the antibiotics chosen. Nevertheless, this is not something to mess around with.

I wanted to eat real food for as long as possible. I had had a PEG tube for a year during and after treatment long before IMRT and when the collateral damage and pain from the treatments was significant. Years later I was eating relatively normally, but in an 18 month period I was treated, and then later hospitalized for aspiration pneumonia three times. That last time was a very difficult battle with IV antibiotic cocktails to get rid if it. It was clear that the next time I might not survive it.

I got a new PEG, and became NPO or nothing by mouth. No water, no food, no smoothies, nothing. I have been that way for 4 years now. I’ve learned a lot about PEGs and have selected a new design that doesn’t dangle, and I’ve learned to blend a highly nutritious diet of real food which pretty much is the same every meal. It’s chosen for nutrition, as taste is no longer an issue. It has a pretty weird combination of things in it you would never put together in your mouth. The reasons for that in another post. My cardiologist could not be happier about what this diet has done to my blood work combined with routine exercise.I can add weight, lean body mass, even at my older age.

For this post I will just caution about the aspiration issue. I know several people who have died this way because they were stubborn and could not accept their fate. Recreational eating is an oxymoron. You have no sensation that you are aspirating anything. Why would you risk it? B

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