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#201814 03-30-2023 11:36 AM
Joined: Jun 2021
Posts: 42
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steve l Offline OP
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Jun 2021
Posts: 42
Likes: 7
Well I am getting OK with Blended tube feeding. Actually I may have never eaten better in 72 years. My voice continues to deteriorate though. MY RNT suggested PRP injections to my beat up vocal chords. Has any body tried this?? OK results????

Thanks

Steve


steve
72 yo
SCC 2009
Radiation/Chemo, clear 2010
Active triathlete
NPO and bad voice after 12 years
But doing great
steve l #201816 04-03-2023 01:44 PM
Joined: Mar 2002
Posts: 4,912
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OCF Founder
Patient Advocate (old timer, 2000 posts)
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OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
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We seem to be in a similar place. Like you on a full time PEG, blending batches of very weird things you would never put together in your mouth, but chosen specifically for nutrition and micro nutrient content, I’m probably eating better than ever in my life….though this is a chore and there is no enjoyment or taste that is pleasurable. But this is my life, no whining allowed, but really I’d kill for a real meal.

My voice has deteriorated and I’m barely understandable. No amount of speech therapy has helped as this is all nerve cascade failure and there not much to do about that. It’s not just the vocal cords, because so much more goes into making appropriate sounds. Your tongue touching the roof of you mouth in some sounds, the ability to control your lips, and of course to have your uvula touch the back of your throat and close off air, each is why you can’t blow up a balloon, or suck on a straw. There’s a lot more to all this than vocal cords for me. So in this area I’m screwed after years of lecturing.

Don’t have any great advice, but wanted to chip in.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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