ONJ treatment

[Snowbird1]

I am interested in the experiences of those with ONJ—osteonecrosis of the jaw. This was caused by a dental extraction despite following the protocol of discontinuing Xegeva. My husband has stage 4 prostrate cancer diagnosed in December 2014. There is not a lot of information and most dentists do not treat this.

[Reptale]

Yes, Snowbird1, most dentists are entirely flummoxed by ONJ. My ONJ began with hypersensitivity and looseness in three teeth in my upper jaw accompanied by a recurring sinus infection on the affected side. My dentist sent me for root canals and my sinus doc took X-rays (that showed the sinus but not the upper jaw). We stopped X-Geva before the first root canal, but it all got worse and nobody in the ENT or dental faculties had a clue what was wrong. Finally my medical oncologist recommended I see a DDS who has been specializing in maxilla-facial prosthetics for about 50 years. He turned out to be extremely familiar with ONJ and I continue under his care. He was the first to do state of the art imaging of the area which confirmed and pinpointed the location of the ONJ. He had an Endodontist cut off the offending teeth at the root to relieve pain and has me on a 10-day dose of Keflex to control the chronic infection. Result: I eat almost normally now and have had no sinus symptoms in six months. This doc works with the graduate dentistry program at UCLA and tells me he is shocked by how few of his students can recognize ONJ much less treat it. He warns that most maxilla-facial surgeons he encounters want to do some sort of reconstructive surgery for ONJ. According to the records he's researched are not only painful but invariably ineffective. So I'm very sympathetic to your husband's plight. I suggest you find the most prestigious dental school near you and see who knows about ONJ, but don't let anyone operate. Instead have them get in touch with Dr. Daniel Copps in Tarzana, CA. He consults with many many dentists and surgeons and has very persuasive statistics to support his methodology. Good luck! And don't regret the X-Geva treatments: mouth problems are easier to deal with than raging and destructive bone mets.

[Snowbird1 in reply to Reptale]

Thank you so much for sharing your experience. Glad you finally have relief. It is unbelievable how we are at a loss when the cancer related drugs cause these effects that very few professionals can treat. Although this is purported to be a very rare condition it does happen.

[Hidden in reply to Snowbird1]

ADT strips your muscles bones and teeth.. Let us know once he gets on top of it . Reptile has great advice. Sounds like hope for ONJ.

[Papillon2 in reply to Hidden]

👀