OP Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Just an update. I'm STILL having mouth pain problems bad enough to make it seem impossible to eat anything, although I keep trying things.
Fact is, I have some days where my thraot and tongue are so sore, it's painful even to swallow my iced tea--which normally I can do. I have had a few days lately where I've had a lot of phelgm too--like steps backward. And I'm experiencing sme trismus-not severe yet but I can tell it's getting worse--sometimes in the morning I can barely open my mouth wide enough to accomodate two fingers and I can feel it hurting at the joint!
I continue to look in my mouth and I still have some white pacthes that are pretty clearly NOT thrush but mucositis sores--some of these have healed quite a bit but some still have a ways to go. I no longer am at the stage of mucositis where I have a white coating over my whole tongue but I have spots where there is still a white coating--mostly these are on parts of the tongue that I think are rubbing against the edges of my teeth and may be taking longer to heal because of it. There's also a spot on top whjere I can feel lots of little raised bumps--I think that may have already been like that before rad though.
Under my tongue on the right side--kind of opposite where I had te tumor on the left side, I also have a painful spot where I think it's rubbing on a tooth and sometimes it gives quite sharp pains when I drink tea or try other food. I'm a little worried about that one because it is opposite where the tumor started last time--but just 2-3 weeks ag, my ENT said there was nothing that looked like cancer.
Then WHY is it healing so SLOWLY? Its been 9 weeks since the end of rad and it's obvious I'm behind where many other people are in terms of being able to eat things and having pain. Should I go back to the ENT again before the next scheduled appt. which is 3 weeks away? I'm a little panicked.
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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