Connect
Post tonsil cancer
Hi everyone. First post here. My name is Paul and I just turned 42.
I was diagnosed with tonsil cancer in July 2025. Did 35 Radiations and 4 cisplatin and 2 carboplatin. And had a peg tube installed in my stomach...I ended up losing 65 lbs..Treatments went fine. They had me on methadone and dexamethasone for most of it. Got home Oct 21 2025 after the treatments
First two weeks after was painful in my mouth. Used lidocain which helped. Got off all the pills and was able to eat a lot. Eggs oatmeal pastas. Until about week 8 post. Then I started to feel very sick and couldn't bare to eat anything. They ended up putting me back on dexamethasone and domperidone with a acid relex pill. I feel much better now at week 12. I got lymphedema in my neck which is causing a hard time shallowing. But I've been able to eat scallop potatoes and lasagna the last few nights. Lots of water with it. My taste is ok. Not as strong as it was. But not gross. Anyone else go through the same. Does it get better. I started to go back to the gym this morning and go back to work next week since this all started back in July.
I'm worried about going off dexamethasone and starting to feel crappy again. Also my wife and I go to Mexico every year in February. Still thinking of going. Finger crossed
I get my tube taken out next week and have my 3 month pet scan in 4 weeks
Like
Helpful
HugInterested in more discussions like this? Go to the Head & Neck Cancer Support Group.
Connect
Hi Paul. Welcome to the Head and Neck club. I was about 45 when I went through SSC on a tonsil as well. Eating issues took a long time, literally years. Or to be more specific, I simply got used to eating differently, dealing with acid reflux or the prevention of same. No food within three hours of bed. Begin sleeping on left side. Drink plenty of water.
It will take months to get better control of your healing health. A trip to Mexico? Are you prepared if you get sick there? How about Las Vegas instead?
I won’t make any recommendations about medications but I will side with you on getting off the pain killers as you did. Try to avoid certain foods such as lasagna because of the tomato base and yes, Mexican foods for about two years until your internal systems heal from the abuse of Chemo and radiation in particular.
Also, consider a thyroid blood test to be certain your thyroid was not damaged. That in itself will make you feel all sorts of crappy.
To close, welcome to the club. If I or anyone here can help you with thoughts or suggestions, you have come to the right place. Your 2026 should be an improvement.
-
Like -
Helpful -
Hug
1 ReactionHi Paul. In time you will come to understand that what you went through was to save your life. The changes will eventually become inconveniences that you learn to live with. No one can predict what changes you will endure, or how you will recover, but one learns to adapt. I'm 20 years out from my treatment and have come to appreciate that the options were very limited at the time. Since then, I've gotten to meet my 4 grandchildren and watch them grow up. It has been a small price to pay for that privilege. Good luck!