Anyone experienced Jaw Necrosis from Zometa infusions.

[Johnstonearch]

I am 20 years out from my initial Stage IV terminal diagnosis in 1999. I had Zometa in 2004 and 2005 which resulted in early stage jaw necrosis which was handled by stopping Zometa and antibiotics . It has returned with a vengeance now and after 4 months of treatments nothing is working. Anyone have any ideas? My doctors have just thrown up their hands!

[dentaltwin]

Do I understand you that your previous bout with osteonecrosis apparently healed completely, and that you haven't been on bisphosphonate therapy or other drug designed to prevent bone loss (such as denosumab/Prolia/Xgeva) since 2005?

[ShenStone in reply to dentaltwin]

Yes that is correct.

[dentaltwin in reply to ShenStone]

I'm confused--are you the same guy who's also posting as Johnstonearch, or you're just in a similar situation?

[Coolpops]

Thank you and god bless

[dmt1121]

Not sure what the medical answer is but maybe going to a major medical center that deals with this condition would be helpful for a second opinion and perhaps a new treatment plan.

Good luck to you!

[pilot52]

Jaw necrosis and bisphosphonate therapy go hand in hand..Had radiation necrosis ( ORN) and underwent hyperbaric therapy, antibiotics, and finally a 40% jaw replacement..MD Anderson referred to to Bob Marx in Miami who was tops in the field..Just FYI

[dentaltwin in reply to pilot52]

If you had radiation to the head and neck, and your mouth is in the path of the radiation beam, you will be at risk for osteoradionecrosis (ORN). Depending upon the dose, the level of risk is far greater than with bisphosphonates. Use of hyperbaric oxygen I think is pretty routine for oral surgery after head/neck radiation. There is much less out there about hyperbaric oxygen to prevent necrosis in the context of bisphosphonate use. The topic of MRONJ specifically is much more of a "wild west" situation--some surgeons try very hard NOT to treat with curettage or other surgery, and others aggressively curet. This is a rapidly changing field, which certainly doesn't help patients trying to decide what to do with incomplete information. But I'd guess that if Bob Marx is THE GUY for ORN, I'd bet he's knowledgeable about MRONJ as well.

[Hidden in reply to pilot52]

Whoa nelly! Great job getting through that hell . 😂

[ShenStone in reply to pilot52]

Olease describe the surgery procedure and recovery.

[Hidden]

congrats on twenty years .. that’s a far reach for many of us newbies. Gives hope to many starting out . After four years in I just reluctantly took my first prolia shot . The same far of jaw issues is there.. Sorry that it happed to you .. I’m awaiting others in the know to answer your question. Maybe you could scare me by the details of your problem . Pain involved??? I pray for a fix .. 🙏

[ShenStone]

Same Dude Somehow I ended up with two handles here.

[j-o-h-n]

Johnstonearch = ShenStone and vice/versa

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 08/30/219 4:29 PM DST - Pinnes

[PhilipSZacarias]

Hello John,

My cousin suffered from osteonecrosis of the jaw (ONJ) for 8 years after receiving chemotherapy and radiation for breast cancer. After seeing more that a half a dozen dentists in Canada and the USA, she finally found a dentist in the USA who is an expert in treating ONJ. He comes highly recommended. Contact info is as follows:

The dentist name is Dr. Stuart Nunnally of Nunnally Freeman & Owens in Marble Falls, Texas

healthysmilesforlife.com/ab...

phone 1 - 830-693-3646

Cheers,

Philip Zacarias

[Johnstonearch]

Thank you so much! I am scheduled to see a DDS/MD/PHD at NYU this coming Wednesday. Hopefully he will figure this out otherwise I will be off to TX!

[Fuzzman77]

Nasty stuff. I was on Xgeva for about a year and a half, then had to have a tooth pullled and my jaw blew up with growing bone. Have been off Xgeva for four months now and in two months the oral surgeon will be shaving off the excess bone. While I wait it is a little bit infected so have some pain all the time. Actually looking forward to getting it over with so my mouth doesn’t hurt anymore. Side effects from treatment are horrible sometimes with this disease.

[Walter_Gould]

I had narcosis in my jaw among many other problems Zometa caused and I will never take it again.