I am a 40 year old female, non-smoker, non-drinker, that recently had 90% of my tongue removed along with some of the base of my tongue, my left tonsil. I have a PEG tube. I was eating pretty well before radiation, but now even the smallest pieces of food get hung in my throat, causing me to gag and sometimes throw up. Will I ever eat or swallow again? My hope is diminishing!

Any updates or progess on others you could pass on would be appreciated.

Thanks,
Lynn

Hello Lynn, and welcome!

I didn't have surgery on my tongue but I have lost much of the mobility on one side because of a nerve that was severed during my surgery. It is very early for you to have back to normal with regard to swallowing. I had lots of problems with food going down the wrong way for quite a while. The good news is it should get better. I am not sure when your last radiation treatment was but take your time and you will see improvement, several more weeks perhaps, but things do take time. I had significant improvement in the first 4-6 months but changes for the better are still evident even now.

Hi Lynn, your swallowing problem is very common among oral cancer patients but I am wondering why if you have your PEG tube inserted, your food still gets hung in your throat causing you to gag. I remember having more problem if I took soup or water but if I had congee or yogurt, the feeling was much better. Try something semi-fluid. Mark is right that things will certainly get better and better and after 5 to 6 months post treatment, I could already eat most of the food without problem. Be patient.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi Lynn,
I wanted to repond to your post on the other topic as well as this one.

First, about depression. You are right on schedule for it. I am surprised that your medical team hasn't already recommended something. It's a relatively common after effect.

Secondly, about your swallowing problems. They too are common at 2 months post rad. You will start to improve from here. The muscositis is what causes most of the problems and it usually starts to go away at 6-8 weeks. Like Karen said also, maybe 2 months is still a little soon for solid foods. Although I have to admit that I had pizza amd salad in late May following my March 19 final treatment date. It was a few months beyond that when I was able to eat fairly normally. We all heal at different rates.

Don't let your hope diminish - you are right on the brink of some serious improvement.

Hey Lynn,
My husband started using his PEG after three weeks of chemo/rad. He had a total of 8 weeks chemo/rad and has been finished treatments for two weeks. He still cannot take anything by mouth. We put everything in the tube. The mucositis is still very bad causing him to gag at times and he has a cough which also brings on gagging and throwing up. According to our medical team, this is normal and more time is needed before even thinking about eating by mouth. Take care and hopefully you have a really good support system in place. It is what has gotton both of us through this so far.
Take care,
Debbie

Thanks everyone! Maybe I am rushing thing a bit, but that is my personality. I want things to be back to at least a new normal relatively quickly! I see the doctor Friday about something for the depression. I really think this is a withdrawal symptom from coming off the pain patches.