Hi Colleen,
Welcome to OCF! It is the best place for support and information on oral cancer.
I also had a lot of side effects from RT including �pre-osteoradionecrosis�. I had a great team of doctors (ENT, RO, dentist and oral surgeon). I continue to see my ENTs (one local and one at Johns Hopkins) and my dentist regularly, and an oral surgeon if needed. I also continued to see my RO regularly until he retired.
Because of the issues I had my RO and ENT recommended HBO therapy. But before I went for the HBO therapy my RO tried a medication treatment which was Trental/Pentoxiifyline plus vitamin E. My RO explained that the trental altered the shape of the blood cells so that they could get through the damaged capillaries and deliver oxygen to the radiated area. This is an off-label use of trental, but I know a few other OCF members used it.
My RO prescribed the trental treatment about 6 months after RT. He had me take it with vitamin E (800 IU twice daily). He said I had the worst reaction to RT he has seen with mouth ulcers, swelling and my healing time was off the charts. I also showed signs of ORN as my front teeth started to loosen. He had me on the trental/vitamin E treatment for about 1-1/2 years. Eventually my team of doctors convinced me to give HBOT a try, so I went for 45 treatments. I would say the trental did help me, but it was a slow process. The HBOT had a quicker impact, but spending a few hours per day in the HBO chamber is a �major pain�. Many of the chambers have a TV attached so I was able to bring DVDs to watch while getting the treatment.
I would definitely recommend finding a new ENT � one that treats a lot of OC patients. Are there any major cancer centers in your area? There is a list on the OCF website.
I�ve been to a few different doctors and have requested copies of my medical records from each doctor which I scanned and therefore I was able to provide copies to any new doctor I would go to.
I hope this info helps � good luck!