I used to post here long time ago when Brian Hill first started the OCF, or in its early stages anyway. Back then we were a small community of Oral Cancer survivors. Well, that, and the internet or inter web as some like to call it, was pretty new. I met Brian Hill in an AOL chatroom. Anyway, I'm a 15 year stage IV oral cancer survivor. Tongue cancer specifically. SSC. I had the jaw spit surgery and then barely endured both Radiation and Chemo. Man I was sick! UGH! But here I am 15 years later so I shouldn't even dare complain. HA! I had a pretty good run for many years UNTIL my fiasco with ORN. IMHO the ORN is worse than the cancer itself, if you can believe that! I won't die from it, but it is very disabling non the less. The best bit of advice I can give you or anyone out there concerned with a ORN DX is: MAKE SURE YOU HAVE A GOOD MEDICAL TEAM that knows exactly what they're doing and how to treat the disease. Unfortunately for me that was not the case. I was misdiagnosed at by a U of M dentist and then had the misfortune of being referred to a Maxiofacial Doctor but not one who really dealt that much or at all with ORN. All though a very respected doctor in his own right, he just didn't know what the hell he was doing. My loss. I almost lost my jaw because I didn't heal, and because of the amount of damage this Doc. did because he didn't know what the hell he was doing. Its a long complicated story and too much writing for me today, but if anyone has any questions or concerns about ORN you can certainly ask and I can answer what I know, which is a lot --- just a little too late.