Pharyngoesophageal Stenosis - Long term effect of chemo radiation

diego1911

Logan51

Thanks for the post. I became FT-dependent around 9 years out due to collateral Rad damage to the top 1/3rd of my esophagus. Lived with for some time, coughing up Ensure, etc., and losing weight, before I finally got a swallow test and the Dr. who did it could not believe I had not experienced pneumonia. Been FT-dependent for the last 31 months, and it does take a toll on quality of life. I, too, had a PEG during tx, but swallowing was great for my first 7+ years out, at least. And yes, oh do I miss the taste of food- I used to be a M&M and cookie binger!

Did not realize so many share the problem. It's the Photon Rads that I had, and probably you, that is the real cause: zaps a larger area than Proton.

I

diego1911

https://csn.cancer.org/discussion/comment/1694339#Comment_1694339

Mikemetz

I was not aware of the name for it, but have had PES for several years. Odd that no doctor ever called it that. Developed an esophogeal stricture a couple years after Tx, coupled with ORN that led to a left mandibular resection. Things went even further downhill gradually after that and struggled with choking and very limited food choices. About 2 years ago was advised to be totally FT dependent. The only thing I eat orally is a small cup of plain yogurt in the morning with some jelly in it. Two bouts of aspiration pneumonia since then. But still watch some food shows with my wife, and occasionally cook for her.

While really difficult for me, it's also been hard on my wife. We used to love to cook together often, try all sorts of new foods, and go out to restaurants. So, her life has also changed a lot from my PES. The truth is I would not be alive without the FT and the IsoSource formula, so as I say in my book, "It (the FT) sure beats the alternative."

Mike

diego1911

https://csn.cancer.org/discussion/comment/1694348#Comment_1694348

https://csn.cancer.org/discussion/comment/1694348#Comment_1694348