I have been hesitant to post on this topic once again. I am actually afraid of what I might hear back. Some background - Bob is 6 yrs. post chemoradiation. Last year a tooth was extracted, HBOT prior and after. No problems healing. 6 months later, sudden jaw pain & swelling, cleared with antibiotics. Pain has now returned.

I, of course, have been worried about ORN since initial dental problem. We have a wonderful local oral surgeon who advised consultation at cancer centers. We went to a dentist consulting at Dana-Faber in Boston and NYC. Bob is now at Institute for Head, Neck, & Thyroid Cancer, Mt. Sinai Hospital, NYC (several hrs. from our hone). Oral Surgeon, Dr. Daniel Buchbinder and ENT, Dr. Urken.

Based on 3D cone beam scan, the dx is very early stage necrosis of mandible. In addition, another tooth needs extraction. The team offers some hope that progression might be gradual, but no real way to determine how it will go.

My questions:
- I forgot to ask when cutting tooth down, leaving root intact is done. I will ask MD this directly, but wondering if anyone has info.

- I believe an Australian poster was advised to grind teeth down and let them fall out on own.

- Is there anything else I should do?

My husband is taking this in stride. I want to trust this team, but am anxious about lack of clear protocols and depressed about jaw replacement in our future.

I have read that less than 20% of oral cancer patients with radiation to the oral cavity will develop ORN. This figure was in a general article about head and neck cancer with no indication of scientific study to back the figure.

In my own experience I have tried to identify factors that contributed to my ORN in addition to the direct shot of XRT through the mandible. 1.I did not have any blocks or masking for my multiple fillings and several crowns during my 60 Gy. 2.I used bisphosphonates (Fosamax) to treat osteoporosis for about 10 years, and it is known that bisphosphonates can contribute to osteonecrosis. Osteoporosis was diagnosed in my early 50's. My SCC was diagnosed when I was 57. In retrospect, given my SCC dx, there are changes I would have made: 1.I would not have taken bisphosphonates. My PCP and my MO both encouraged continued use after my SCC dx. I made the decision to discontinue Fosamax about 6 years ago. By the way, I have reduced the osteoporosis dx to osteopenia through diet, exercise, natural supplements of calcium/D. 2.I would have thoroughly researched the radiation plan and have addressed blocks, etc. for radiation scatter. 3.After radiation I would have located a dentist familiar with oral cancer and ORN and questioned each panoramic X-ray re signs of ORN.

donfoo and others who have addressed the lack of medical resources for patients with long term radiation effects: My cynical take is "Follow the money." I talk with my current medical team about the lack of professionals in this "field" and encourage other patients to do the same. Unfortunately, I don't anticipate much change. Education for patients is crucial, and we can do that through our participation in SPOHNC, the Oral Cancer Foundation, other patient-active organizations.

I'm sorry to hear this. I am a proponent of the positive studies done in Europe using a protocol called PENTOCLO. Pentoxyfilline/alpha-tocopherol/Clodronate. We can't get Clodronate in the US and it is called PENTO here. The people in the studies for the past decade have shown very good results. Here is a summary of the latest study from UCLA.

http://c.ymcdn.com/sites/www.scdaon...terials/The_Efficacy_of_Pentoxifyll.pptx

I do know from experience that it takes me a certain level of exercise/exertion to see results but it is miraculous. I believe this has prevented serious deterioration of the non-marrow producing cervical vertebrae. The improvement in blood flow has helped regain and maintain significant muscle.