Hi Dianne..........Wow! Sounds like you've been through a lot! I, too, was diagnosed with SSC of the tongue and floor of the mouth. In April of 1997 I had both a hemmiglossectomy and radical neck done; I was given six weeks to heal from the very invasive surgery and then began my real battle: radiation and chemotherapy. I was given thirty eight days of radiation along with three rounds of chemo sprinkled in there for good cause. It was a difficult treatment regime, but I guess I don't have to tell you that. LOL

Five years later I still suffer from RAD with most of my difficulty being an extremely dry mouth. I am never without a bottle of water at my side and although I take the prescribed salagen, it doesn't seem to work well for me. My teeth are healthy (knock wood) but the bones in my jaw seems to be slowly going down hill. A few months back I woke to find a piece of bone literally coming out of my gum line. I have all the usual eating/swallowing problems but the majority of my problems seem to stem from dry mouth, which is a constant. I seem to have more difficulty in the winter months when the weather is dry, but also have trouble with my oral cavity if I do too much physical activity. Even walking my dog can cause my tongue to swell making my speech a real mess, and my mouth very sore. The dryness also causes sores on the inside of my cheeks/lips and then there is the constant burning sensation that I have 24/7. Still, like you, I plugg along; I have adjusted to make the best of a rather poor situation. smile

Really, the only thing that gives me comfort is keeping my oral cavity as moist and clean as I can, day in and day out. I have tried Oral gel, and salagen and even Biotene gum for dry mouth but nothing seems to work better than good old fashion water which, like I said, is always at my side.

Would love to chat with your reguarding cancer/dry mouth. You can either e-mail me personally or ask specfic questions on this forum. Either way works for me. I'm glad to hear that you've been able to keep the cancer at bay with either surgery or radiation. That gives me hope. Look forward to hearing from you again. Sincerely, Donna

SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments.
SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously.
Cancer free 6, yes, six, years!