This sucks - Osteonecrosis of the jaw

onlywhenitrains

@maggie15 Laryngeal fibrosis. FFS! I really thought my parotid cancer saga was over. But my surgery scars and radiation burn have become more pronounced 15 years later. No idea why. And now, possible MROEAC? Well, if it's from my radiation of days of yore or from my more recent long-term use of Xgeva for MBC, it doesn't matter really. It's just one more thing to stay on top of. Best wishes for your new voice therapy.

janedoe7

Oh, I am so sorry this is happening — to all of us! Thank you, everyone, for your advice. I am taking a vacation from Xgeva and getting the name of an oral surgeon with experience with ONJ and cancer patients.

onlywhenitrains

I went to the oral surgeon to have two teeth extracted today and it was revealed that I had a large (one inch) bone fragment that was also loose. It, too, was extracted. It looked like some prehistoric lifeform that emerged from the primordial ooze. This was a development I was not expecting. I have a follow-up with the oral surgeon next week. If it appears that my sinus cavity is in danger of exposure, then he'll send me to another doctor. I didn't bother asking about an ENT referral for my possible osteonecrosis of the external ear canal. One step at a time.

maggie15

Oh no! My oral surgeon said that removing all the affected bone is the best way of stopping the rot. When I asked about the possibility of causing further structural damage he told me he also rebuilds maxillofacial areas of people injured in car crashes and suffering from gunshot wounds (he did his fellowship in Detroit.) It seems there are options for rebuilding sinus cavities and all other parts of the skull. A head and neck plastic surgeon can then repair the epidermis if necessary but is often not needed since oral surgeons work beneath the surface. I hope you don't need a referral but it sounds like these docs can do wonders. Fingers crossed that your sinus cavity is not in danger of exposure. Glad to see that your most recent scans show stability.

onlywhenitrains

@maggie15 Thank you for the encouraging perspective about reconstruction options. If my ONJ advances in spite of the removal of the chunk of dead bone, it's good to know that it's not the end of the road. I was always worried about QOL with ONJ and so far it's been okay. This appointment was the first indication that those okay days might be over, but I have hope that I can weather whatever comes down the pike.

onlywhenitrains

@maggie15 I just had my second follow-up with the oral surgeon. Good news. I am healing well and I am to call him if I experience any problems. No more appointments. Two days earlier, I had a teeth cleaning at the perio. Both the perio and the hygienist were pleased with my progress. So three dental professionals I have grown to trust say I am done for the foreseeable future. I guess removing all the affected bone is the best way of stopping the rot, but maybe it has to happen according to its time? I don't know or care at this point. It's just nice to be done with this adventure for a bit. My hygienist said that my mouth perked up quite considerably once the nasty chunk was gone. Every now and then I leak water out of my nose. If this is the worst thing that will happen for the rest of my life, I'll be happy.

maggie15

@onlywhenitrains, What wonderful news! The positive opinions of three dental professionals should give you confidence that things have settled. I hope your jaw doesn’t bother you again.