[lyndaclark]

Jaw Necrosis

by lyndaclark on Sun Mar 27, 2011 1:34 am

I was diagnosed with multiple myeloma in 2005. At the beginning of 2011 (over four years since my last Zometa infusion), I developed a sore inside my mouth on my lower gum that wouldn't heal. After visits to an oral pathologist and an oral surgeon, I have been told I am probably suffering from jaw necrosis. (I'm awaiting results of a jaw bone biopsy to insure this wasn't the return of the myeloma or mouth cancer, but my symptoms are identical to those for necrosis.) I remember being told of this possible side effect prior to receiving Zometa, but I was surprised this condition could occur years after my last infusion. Has anyone else experienced jaw necrosis? I'm curious what to expect in the future as far as treatment for this condition, and if one incidence usually leads to another. During my last visit, the oral surgeon "cleaned up" tiny pieces of dead bone which had broken loose beneath the gum at the same time he performed the biopsy, and gave me antibiotics and a mouth rinse to use several times a day.

[cyom22]

Re: Jaw Necrosis

by cyom22 on Thu Mar 31, 2011 8:13 pm

Hi, I was dx with ONJ after 6 infusions of zometa. I also went to an oral surgeon and endodontist for 2nd opinions. I found a specialist, who did the same thing. Cleaned up the bone shards and used mouthwash. I have another shard working it's way out now. He said with onj less is more. I'm temporarily off zometa until this problem clears up. Hopefully it remains just a nuisance and not a big deal. Good luck, Carol

[lyndaclark]

Re: Jaw Necrosis

by lyndaclark on Fri Apr 01, 2011 8:49 am

Thanks for your reply. What you've said sounds consistent with what I've read online.

[ckelly]

Re: Jaw Necrosis

by ckelly on Wed May 04, 2011 3:24 pm

Hello, I was diagnosed with multiple myeloma in 1/08. I was treated with zometa for ~5 months and have had two jaw surgeries for jaw necrosis in the past year. I had it on both sides of my mouth the first time. When it came back the second time (only on one side) my surgeon thought that he must have not shaved the bone far enough, which lead to another surgery. I tend to listen to the side effects information on these drugs more carefully now. I haven't had any problems recently so hopefully that is one side effect that I can cross off my list.
Good Luck.

[Dr. Edward Libby]

Re: Jaw Necrosis

by Dr. Edward Libby on Fri May 06, 2011 12:18 pm

Hello Lyndaclark,
I am not a dentist or oral surgeon but I think I can help with the answers to your questions.
It has been reported to take as long as 4-7 years after the inital exposure to bisphosphonates to develop osteonecrosis of the jaw (ONJ). In general ONJ occurs much earlier (2-3 years after initital exposure) but several years is not unheard of.
What to expect in the future is impossible to predict without speaking with your dentist and oral surgeon. Your biopsy will help to further define the extent of the ONJ. It sounds as though you have Stage 2 disease (exposed necrotic bone that is painful and secondarily infected). Generally the treatment for this degree of ONJ is oral antimicrobial rinses in combination
with antibiotic therapy. A high percentage of patients with Stage 1 or Stage 2 ONJ can be stabilized with oral rinses and systemic antibiotics. If your oral surgeon feels that the disease is more advanced you may need to have surgery to definitively teat the ONJ. It can be a long process to gain control but it has to be done. It sounds as though you are in good hands.