Hello,
I'm a recent participant in the forum, so I apologize if I'm "out of order" posting here as opposed to some other place.
I've read the survivor forum for years under various topics - e.g. mucositis. My quick background - SCC of gingiva in 2004 (non smoker, non drinker) 50's, diabetic, 2 recurrences (pre-radiation)- surgeries, radiation (entire oral cavity/both sides (part of parotids down to adam's apple) - IMRT 66 gy completed 18 months ago, dry mouth, trismus, couple biopsies (inflammation), take various meds including over the counter anti-inflammation/pain meds . My main problem is oral pain post radiation (18 months after radiation) - almost everthing I put in my mouth hurts - medication (e.g. Nystatin burns), most food burns (got to wash down with water asap), can only drink water/tea; I'm very dry always drinking water; also hurts when I brush my teeth, push it with Therabite. My docs - ENT and radiation oncologist had claimed I was a "slow healer" but now are not so sure (they've called it mucositis but I wonder if radiation just destroyed my oral tissue permanently). Also when I talk alot - my left side of mouth/tongue (where I have up/lower teeth left) really gets raw and more pain (also have a number of yellow spots that come and go - treat with Nystatin liquid - helps but doesn't solve). I see very few comments about oral pain long after oral radiation completed (even just months ago) - any thoughts on my facts/issue/treatment options (especially for the pain) would be appreciated.