Sounds like you're currently in the same boat I was in 4 months ago.

I finished my 42 radiation treatments at the end of August. By the time I was done, I couldn't eat and I could hardly drink water. You know the routine. I was seriously starting to lose weight.

I took a couple Tylenol to try to stop the pain long enough to eat and I choked on 1 and tore my epiglottis. The next day, I went to the ER and was admitted for gross dehydration and difficulty due to the torn epiglottis.

While there, we decided to put in the feeding tube. It was the best decision we made and I wish I had done it at about Week 4 of my radiation to be prepared for when the worst hit.

With my tube in place, I could easily get 2300 calories a day of protein-rich liquid food. Protein is very necessary to rebuild cells and tissue killed by the radiation.

Now...taste and salivation. The good thing about the feeding tube, is I could get all the calories I needed while experimenting with different foods and drinks. To be honest, for 2 months after radiation, EVERYTHING sucked. It either hurt my throat, tasted awful or gagged me because of lack of saliva. I was discouraged, but my wife kept pushing me to try new things.

Slowly, things became edible again. Scrambled eggs were good again, but milk was bad. Oddly enough, steak was good, but chicken was not. In other words...lots of experimentation. Salt was a big issue. Anything with salt was VERY salty, so I had to learn to adjust.

By December, I had gained back weight and more and more was edible. I started reducing the number of cans of liquid food (Jevity 1.5) I drank through the tube as I was able to eat more regular food. By the end of December, I had gone an entire week without using the tube as I was able to find more food I could eat...and actually enjoy again!

I went ahead and got the tube out on Jan 4, about 4.5 months after my final radiation. In the past month, my taste and saliva have improved exponentially. I'm not just EATING food again, I'm ENJOYING food again! The issue with salt is mostly gone. I still struggle with pizza and spaghetti sauce, but I'm not sure why. The saliva is still a slight issue, but hugely improved.

My advice...get the feeding tube. Then you can recover your taste and saliva and not sweat the calories. It's a little inconvenient, sure. Yeah...I even peed on it a few times! It IS in the way sometimes. But it saved me and I believe that all the protein I was able to get while recovering helped me recover more quickly.

My PET scan says I don't have cancer anymore and things are good. My throat still does get sore but not like it used to. It'll get better.

I really think you should get the PEG tube. Hang in there.


Thomas
50/married/2 children
SCC - Base of tongue + 1 node - P16 pos
Diagnosed 5/2015
Positive PET scan - 6/2015
Tomotherapy (42 treatments) through 8/2015
PEG tube - 9/15 - 1/16
NEGATIVE(!) PET - 11/2015