Hi everyone! New here. I'm a 7 year survivor (2011) of Stage 4A Tongue and Lymph node cancer. I had Chemo and Radiation for 8 weeks (7 treatment and 1 week in a hospital over thanksgiving) My problem is I can't find any answers to my question/problems I'm experiencing now.

I had all the expected issues following treatment, but about a year ago I started new ones. I have slight swelling of my tongue with moderate to severe pain all the time. I also have pain in my jaw. It makes it extremely difficult to chew and swallow (I almost choked to death a few weeks ago at lunch but finally dislodged the food)! It seems to be worse in the colder months.

I have had every test you can imagine by different doctors, ALL coming back negative. My ENT doctor here (along with his colleagues in the office), had no answer or even an educated guess what the problem was or how to treat it. He referred me to USC Keck Medical Center. The ENT specialist there gave me the same answers my doctor here did, no idea what is was, what was causing it, or how to treat it.

Needless to say, I am quite frustrated! At one point I lost over 25 pounds in a 6 week period. I still can't eat normal, it has to be soft with small bites, and washed down every time. Can't finish a meal if it takes too much chewing and/or swallowing. It just gets too painful to eat.

So I was wondering if anyone out there have had, or know someone who has had, the same problem. Hopefully someone can give me some information to pass on to my doctors to possibly diagnose and treat it!

Thank you for your time!