1. < Head & Neck Cancer

Anyone dealing with long-term dysphagia and chronic cough?

Posted by americanfurn65 @americanfurn65, May 29, 2024

Asking for my husband who is 61 and 12 years post chemo/radiation for stage IV scc base of tongue w/lymph node involvement. He is now dealing with the long term side effects mainly dysphasia and chronic cough. Asking for any others who have dealt with the cough and what may have worked. He is working closely with his ENT who currently has him on 1200
Mg of gabapentin for possible neurogenic cough; antihistimine regimen as he has the “wet” cough. He has had injections in the larynx area, he has a paralyzed vocal cord. He has had his esophagus stretched. He also has dealt with a couple of bouts with aspiration pneumonia.

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sharonlee | @sharonlee | 5 days ago
In reply to @forestleaf "My husband has dysphagia from late effect of radiation treatment some 35 years ago, and is..." + (show)
@forestleaf

My husband has dysphagia from late effect of radiation treatment some 35 years ago, and is advised by the doctor for tube feeding to prevent aspiration pneumonia. Is it possible to manage dysphagia without resorting to tube feeding?

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I am following on how to manage dysphagia. Perhaps speech therapy. Eating soup and health drinks one can still swallow something. Does this group allow for direct message to someone?

REPLY
josk | @josk | 4 days ago
In reply to @michael81 "Hello from an OLD GUY dealing with Dysphagia for the past 24 years. You're right, there..." + (show)
@michael81

Hello from an OLD GUY dealing with Dysphagia for the past 24 years.
You're right, there is no cure. Do the speech exercises, they help.
I'm 81 now and in Hospice. My days are numbered. I get Pneumonia often and
it will kill me. As for your coughing, Deep Breathing Exercising Will Fix That.
When you do them, be sure to practice HOLDING YOUR BREATH. That is a
big help in eliminating the cough. I made it for 24 years. Screw the feeding
tube. Awful, had it pulled out. I've been on a liquid diet for all those 24 years.
You will get used to it. Main meal is blender food around noon and various
blended soups for dinner. GOOD LUCK ! You Can Do It

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hey michael81
Love your view on feeding tube - in my follow-up appts with my doctor at PMCC, Toronto, I make it a point to convey to him that if time comes that I do require a feeding tube to survive - I will request for MAiD (i.e. if this Advance Request Bill gets to pass).
Take care & keep well!!

REPLY
ltecato | @ltecato | 3 days ago
In reply to @forestleaf "My husband has dysphagia from late effect of radiation treatment some 35 years ago, and is..." + (show)
@forestleaf

My husband has dysphagia from late effect of radiation treatment some 35 years ago, and is advised by the doctor for tube feeding to prevent aspiration pneumonia. Is it possible to manage dysphagia without resorting to tube feeding?

Jump to this post

“Is it possible to manage dysphagia without resorting to tube feeding?”

In my experience, it is. I was on a feeding tube for a while but it kept falling out and I kept getting aspiration pneumonia, which the feeding tube was supposed to prevent. I stopped having it replaced after it fell out for the fourth or fifth time.

I had my esophagus stretched and I am now on a diet that is either “soft mechanical” or liquid. I also am taking 100 mg doxycycline daily to prevent pneumonia. I expect to be doing this for the rest of my life.

I have decided that I will not get a feeding tube again unless I am permanently in a nursing facility that can handle all the problems that plagued me when I was trying to use a tube at home. The people who sell you on the idea of getting a tube don’t tell you half of the downsides that come along with it. It’s not what I consider to be user-friendly technology and it’s not easy to get support when the technology fails.

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2 replies
forestleaf | @forestleaf | 3 days ago
In reply to @ltecato "“Is it possible to manage dysphagia without resorting to tube feeding?” In my experience, it is...." + (show)
@ltecato

“Is it possible to manage dysphagia without resorting to tube feeding?”

In my experience, it is. I was on a feeding tube for a while but it kept falling out and I kept getting aspiration pneumonia, which the feeding tube was supposed to prevent. I stopped having it replaced after it fell out for the fourth or fifth time.

I had my esophagus stretched and I am now on a diet that is either “soft mechanical” or liquid. I also am taking 100 mg doxycycline daily to prevent pneumonia. I expect to be doing this for the rest of my life.

I have decided that I will not get a feeding tube again unless I am permanently in a nursing facility that can handle all the problems that plagued me when I was trying to use a tube at home. The people who sell you on the idea of getting a tube don’t tell you half of the downsides that come along with it. It’s not what I consider to be user-friendly technology and it’s not easy to get support when the technology fails.

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Thank you so much for the reply. We need to hear the other side of the story as well in order to make a better decision. Good luck to your healing journey.

REPLY
josk | @josk | 2 days ago
In reply to @ltecato "“Is it possible to manage dysphagia without resorting to tube feeding?” In my experience, it is...." + (show)
@ltecato

“Is it possible to manage dysphagia without resorting to tube feeding?”

In my experience, it is. I was on a feeding tube for a while but it kept falling out and I kept getting aspiration pneumonia, which the feeding tube was supposed to prevent. I stopped having it replaced after it fell out for the fourth or fifth time.

I had my esophagus stretched and I am now on a diet that is either “soft mechanical” or liquid. I also am taking 100 mg doxycycline daily to prevent pneumonia. I expect to be doing this for the rest of my life.

I have decided that I will not get a feeding tube again unless I am permanently in a nursing facility that can handle all the problems that plagued me when I was trying to use a tube at home. The people who sell you on the idea of getting a tube don’t tell you half of the downsides that come along with it. It’s not what I consider to be user-friendly technology and it’s not easy to get support when the technology fails.

Jump to this post

When I had chemoradiation treatment for nasopharyngeal carcinoma stage IV in 2006, I had to have a feeding tube inserted to my lower stomach - and it was ok in that it lasted me throughout my treatment.
My view on feeding tube is that if I have to be dependent on the feeding tube to survive - then it takes the meaning out of being alive.
At the moment, I am still managing with swallowing at home (I avoid eating in public and in gatherings due to issues with having to cough out food when food gets stuck in middle of throat) - with dysphagia exercises and hoping to keep my swallowing and speech from deteriorating.
I live on my own - and trying to adapt and take a day at a time.
It is a tough journey - take care to all !!

REPLY
steve55 | @steve55 | 2 days ago

Josk
I relate to everything you say in your comment. How are you doing with weight? It is my biggest challenge even with high calorie boost every day 3x a day. I know a feeding tube makes medical sense but quality of life is a huge issue.

REPLY
1 reply
josk | @josk | 1 day ago
In reply to @steve55 "Josk I relate to everything you say in your comment. How are you doing with weight?..." + (show)
@steve55

Josk
I relate to everything you say in your comment. How are you doing with weight? It is my biggest challenge even with high calorie boost every day 3x a day. I know a feeding tube makes medical sense but quality of life is a huge issue.

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hi steve55
With the start of my speech and swallowing issues, I lost approx 6 lbs in the 6 mths when we had to go back to office 3 days/wk. But in the last few years now that I have been accommodated to work from home - I am back to my norm weight.
Believe it's that I can eat whatever I want at home - and if I am not able to swallow or if the food gets stuck in my throat - I just cough it out in the comfort of my home- without being embarrassed.
But then again - there are certain types of food that I am not able to eat despite water and all.
As said - will take one day at a time - and take it from there!
Have a good wkend!!

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