Seeking advice for eating challenges

Posted by kth @kth, May 19 8:50am

Good morning, I am recovering from oropharyngeal cancer radiation treatment which ended late last July. I have been working with a swallow therapist but am still having problems swallowing solid/ semi-solid foods due to scar tissue remaining. Additionally, the changes to my taste buds add to the unpleasantness of the eating process. I am primarily using a g-tube (feeding tube) for nourishment but am lacking in fat intake. My weight has remained severely under my normal level.
Has anyone else had similar difficulties? If so, were you able to remedy them? Any and all suggestions/ advice would be appreciated.
Thank you, KH

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thomason | @thomason | May 20 4:58am

Hello kth. I had radiation for cancer of the Pyriform Sinus, which is located down by the vocal cords. It took a good year to get my voice back, and the ability to eat and drink. When the feeding tube fell out, the doctor suggested putting it back, but I refused. After a few swallow studies and much exercising the mouth and throat, the epiglottic flap began functioning better. This allowed me to eat/drink again. Nothing tasted the same, that is for sure. One fine day, my speech therapist brought me a little plate of Italian Pasta. It tasted so good...it was a turning point. Please continue on with the tongue and throat exercises, although tedious as they are! The entire healing process takes much time and is as slow process. You can read more of my experiences in past comments if you wish to. You will be in my thoughts.

jonesja | @jonesja | May 20 4:35pm

I could hardly eat anything after my 30 rounds of radiation treatment. I lived on creamy mashed potatoes with butter. Cottage cheese. Egg’s anyway cooked, peanut butter and jelly , banana , power shakes with powdered supplements and boost , apple sauce, baby food jars, soups and noodles, Boost/ ensure cans pack a lot of good calories. I had to FORCE myself to eat. Salt throat rinse several times a day helps. I finished July 2023 and today I’m about 90% back to normal but it has been a slow climb back.

baz123 | @baz123 | May 21 9:28am

I had larynx cancer 7 chemo treatments 35 radiation which caused a lot of damage .Like you I couldn’t eat solids foods lost 90 lbs no taste had a trachea they took it out after 3 months and had to put it back in a few months later and put in a feeding tube and that help me put on weight and then I went for Hyperbaric 100 percent oxygen treatment 2 hrs a day 5 days a week for 60 days and it saved my voice box and made new blood vessels and repaired a lot of the radiation damage and now I eat everything and taste is back I do still choke occasionally so I have to eat slowly and not talk when I’m earring .Hyperbaric is amazing especially for radiation damage .If you do anything please look into it you will be happy with the results 😊

Jody aka mojo244 | @mojo244 | May 22 6:21am

Hello,
Sorry you’re experiencing this eating problem! Remember that everyone is different and some people eat throughout their entire treatment and post treatments…BUT, you’re not alone my friend!
I too had to rely on the the peg after week 2 of treatment and for nearly a year afterwards…

For me, speech therapy was a waste of time and money so I stopped attending and my oncologist was completely supportive of my decision…

I knew that no matter what I tried, my throat was not going to cooperate until it was ready.
First off the smell of food threw me into a vomiting state! My poor wife and parents (they were helping us) had to eat cereal, bread, no toast, nothing that gave off meat odor or go out to eat!
Finally after approximately 7-8 months I was able to get oatmeal down and that became my food intake for well over a year. Oatmeal is still my breakfast food at 7.5 years out from treatment!

I still have extremely difficult time eating and I choke frequently while eating. I avoid eating solids when I’m alone. I have had 3 dilations performed but they don’t want to do any further dilation.
I have learned to live with this problem and need to drink massive amounts of liquids while eating…no liquid = no eating!

As for your fat intake, talk to your assigned nutritionist about it and I’m sure they can help you! Mine rode my butt every day about my intake!

Sorry I couldn’t offer you a resolution but I just want you to know that you can survive this!
Fight the good fight!

MOJO