Jaw bone necrosis.

[kcareer]

I have been on Xgeva for about 3 years. Now my dentist says that I have osteonecrosis of the jaw because a piece of dead bone was found on my lower jaw. The piece of bone was removed and the hole is not closing up. What do I do? Any advise?

[APK3]

You might look up this guy. Dr. Thomas Schlieve DDS.,MD. UT Southwestern. He deals in ONJ.

[kcareer in reply to APK3]

Thank you for the information

[Ian99]

I had a similar situation 10 years ago following radiation to head and neck. Scan showed a hole in the jawbone, mandibular osteonecrosis which caused facial numbness on one side. An infection had developed in a lower back tooth, I needed an operation to have it removed and ensure all bone fragments were gone.

I was put on an oral regimen called PENTOCLO, which consists of pre-treatment with oral antibiotics followed by prolonged treatment with a combination of PENtoxifylline, TOcopherol (Vitamin E) and CLOdronate (Clastoban).

It took several months but this treatment rebuilt my jawbone.

I was lucky to find Dr Sylvie Delanian in Paris France, whose specialty is side effects of cancer treatment, and is credited with creating the Pentoclo regime.

I hope this is useful. I should add I was treated in France 10 years ago when this was barely known. It was approved by the FDA in 2023 so is now available on a more generalised basis. Let me know if you need more info.

[kcareer in reply to Ian99]

Thank you for the information.

[ctflatlander]

I was on Xgeva and a small bone became exposed in the area where there was a wisdom tooth once was.. Stopped Xgeva. Over time the bone became exposed more and more. Over time like a year it broke off and the gum grew back. The surgeon didn't want to mess with it. Took antibiotics and nature took care of it.

[kcareer in reply to ctflatlander]

Thank you for the information.

[Dannyboy48]

i was on xgiva for about three yrs. The medicine fixed my 3 bone Mets in my pelvis.then dead jaw syndrome set in and I stopped the drug.mets never came back so far in 5 yrs. The hole in my jaw after they popped out the dead bone did get covered by new gum after time. My dentist specializes in onj and other problems. His name is Dr .Ruggiero and he is located on Long Island New York

My jaw problems no longer exist,

[kcareer in reply to Dannyboy48]

Thank you for the information.

[leo2634]

I was on Xgeva in 2018 for a year fast forward to 2021 first of four oral surgeries for bone removal another two surgeries in 2023. And then recently in 2024 finally had nine teeth removed bone extracted and now healed. All of the above was done a few years after Xgeva was finally somewhat out of my system by around 2021.I'm now bone free in my gums new teeth and not experiencing any more bone shards.

Never give up Never surrender Leo

[kcareer in reply to leo2634]

Thank you for the information.

[dentaltwin]

Treatment of MRONJ is controversial, and the quality of the evidence out there is not great. But I agree with Dannyboy48 that at least on the east coast Dr. Sal Ruggiero is probably the greatest authority.

Good luck!

[kcareer in reply to dentaltwin]

Thank you for the information.

[Graham49]

Abdolrahmani, A., Epstein, J.B. & Samim, F. Medication-related osteonecrosis of the jaw: evolving research for multimodality medical management. Support Care Cancer 32, 212 (2024). doi.org/10.1007/s00520-024-...

Received

30 September 2023

Accepted

16 February 2024

Published

05 March 2024

DOI

doi.org/10.1007/s00520-024-...

“Results

Pentoxifylline and alpha tocopherol (PENT-E), teriparatide, photobiomodulation (PBM), photodynamic therapy (PDT), and the use of growth factors have shown to enhance healing in MRONJ patients. Implementing these methods alone or in conjunction with surgical treatment has been linked to reduced discomfort and improved wound healing and increased new bone formation.”

[kcareer in reply to Graham49]

Thank you for the information.

[carbide]

I had extreme osteochrosis of the lower jaw in 2019, from 3 injections of Xgeva. It's taken you quite some time for adverse reaction.Of course stop Xgeva. The dentist should NOT have removed the dead bone. It would have fallen off when new bone was generated.

Most dentists know little to nothing about osteonucrosis caused by bone agents (denosumab). I read there is a drug that should be used after stopping at Xgeva, sorry I do not have the name.

With Time your jaw will heal, maybe.

Xgeva literature claims 3% that take xjiva have adverse reaction. So 30 people get this reaction out of a 1000! Sucks.

Best luck. 😁

Osteonucrosis still on jaw.

[kcareer in reply to carbide]

Thank you for the information.

[Gearhead]

The 1%, 2%, 5% probabilities of experiencing ONJ are misleading. The likelihood of contacting ONJ while taking denosumab or zoledronic acid depend on many factors especially how long you've been taking these drugs.

The most relevant study I've seen is this one:

*Nakai Y, Kanaki T, Yamamoto A, et al. Antiresorptive agent-related osteonecrosis of the jaw in prostate cancer patients with bone metastasis treated with bone-modifying agents. J Bone Miner Metab. 2021;39(2):295–301.

This is a graph from their study implies that people like me that have been on Xgeva and Prolia for 5 years have about a 40% chance of experiencing ONJ. Yikes!

ARONJ-free survival vs time on drugs statistics

[kcareer in reply to Gearhead]

Thank you for the information.

[Grandpa4]

I don’t know exact numbers but they are using higher doses of these drugs in us prostate cancer patients. The risk is higher than women with osteoporosis.

[kcareer in reply to Grandpa4]

Thank you for the information.

[LearnAll]

Lots of great answers about treatment of ONJ. BUT ..What about prevention ? In these times of fast medical care ..(billions served like McDonalds) everyone is served with the same junk treatments...therefore lot many have ONJ. Cant blame Doctors..they are afraid of litigation if they dont prescribe bone builder meds to all. I refused these meds for 4 years while on intermittent ADT and monitored bone density every 2 to 3 months. Calculated fracture risk (FRAX) every 3 months. It I could buy 4 years without risk of ONJ. One year ago, I noticed some decrease in bone density and so I embarked on oral Alendronate on intermittent basis. one month on..one month off. Add bone builder natural supplements such as turmeric, calcium ( prefer natural source) and plenty of Vit D from Sunshine and green leafy vegetables every day.. Walking and physical exercise without a day off. Prevention is better than treatment.

[PapalovesAmah in reply to LearnAll]

I like the way you think!! When you started intermittent ADT, had your cancer metastasized? My husband was diagnosed at Stage 4 with already bone mets. He can't quite bring himself to agree to the Eligard, even though that is the only option given him at this point. And of course, along with the two additional drugs Xtandi and Zometa (??maybe?) . The combination of side effects and potential harm from the three standard medical therapies, well it has given us much pause for thought. We may be overly skeptical of pharmaceuticals. Anyway, we would be interested in whatever you are willing to share about the intermittent ADT. Four years sounds pretty good!!

[LearnAll in reply to PapalovesAmah]

5 years ago, Mine started with with PSA 860 and 2 dozen bone mets. Lupron and Casodex brought PSA down to 0.1 in 11 months. Then, Intermittent ADT was started.

[kcareer in reply to LearnAll]

Thank you for the information.

[kcareer in reply to LearnAll]

Thank you for your information.

[kcareer in reply to LearnAll]

Thank you for the information.

[Thinus]

Same problem here. That is why I stopped all conventional treatment. Too much Zosteopor and Erodron also gave meosteneocrosis of the jaw. Must see the dentist on 5 June.

[kcareer in reply to Thinus]

Thank you for the information.

[Thinus]

And if expensive surgery is needed, I am going to ask Wilgers oncology to pay the account. No questions were asked, no warnings were given. I didn't asked for this s...t to be put in my veins

[carbide in reply to Thinus]

Oncologist will not pay. Good news, after dead bone sheads off, new bone is there; hopefully.Try and find a good oral surgeon and just keep your eye on it. Best luck