Jawbone Death

[Scruffybut1]

Bisphosphonates BEWARE

If entering into any treatment that includes a bisphosphonate such as Zometa - added as an IV during chemo treatment. Others are taken as tabs, ensure you have any required dental treatment first. It says so on the packet!

My case? 10 cycles chemo. Great results with that plus Zytiga. Minor tooth problem began to irritate. My dentist not allowed to remove it under NHS regulations because of the extreme risk of osteonecrosis, jawbone death. As a cancer patient at Charing Cross Hospital in London I was referred to their oral surgery department. They too have to follow NHS regs. They also told me Zometa can hang around in the bones for 11 years. I could have treatment then....if my PCa lets me live that long. I was referred elsewhere, another hospital who referred me to a specialist department at Kings College Hospital. WoW. What an amazing hospital and team. I have been under the microscope literally and physically. The team takes on the most difficult of cases. For me tooth removal sounds simple. For them there is such a high possibility of jawbone death they have spent hours planning my case. Removal can cause osteonecrosis. Because of ongoing deep infection non-removal could lead anyway to osteonecrosis.! No contest. I have requested removal because should the worst case scenario occur I would be in the right place with the right team.

Moral, I repeat. Get dental work sorted before bisphosphonate treatment. And find dental specialists first. My cancer treatment has been and still is great. God Bless.

[rococo]

Excellent advise. Get them pearly whites checked out thorouly before starting biophosphonates

[Hidden]

Wow! If it isn't hard enough. Thank you for sharing, and hoping the best for you

[Scruffybut1 in reply to Hidden]

Hi HankM, I have leant so much since joining this group I had to pass on what little extra I have picked up. Will update after my operation in mid August.

[paulofaus]

Thanks for this David. I have been recommended Denosumab, but I have reservations. I have read that the incidence of ONJ is 1% to 12% (not sure why there is a range, surely they know after 1,000s of people have had it). I suspect the true figure is much higher as I have seen many people, on this forum and others mentioning the impact of ONJ on their life. I had two teeth removed before chemo and I will have another thorough check before I go anywhere near bisphosphonates. Interestingly Dr Bob Leibowitz is a big fan as he uses these seed and soil analogy and believes the use of bisphosphonates makes it harder for metastasis to grow in bones where they are used. Between a rock and a hard place.

[Sisira]

Thank you for your advice. I have learned sufficiently about this risk of possible ONJ when you are taking bisphosphonates and about the importance of attending to any dental work before starting the treatment. Has anyone in our group been really affected by this condition? Yes, osteonecrosis is bone death. What really happens in case of jawbone death? Does that mean that we will not be able to use our jaw any more and it will break into pieces due to complete bone degeneration etc.? I shall thank anyone for a brief explanation please.

Sisira

[The2ofus in reply to Sisira]

My husband has had prostate cancer since 1995 when he was 49. After his prostatectomy, his PSA remained undetectable until 2006.

He has had monthly Zometa from 2008-2016. In Dec 2016, a CATscan showed possible periodontal disease( in reality, this was the beginning of the ONJ). In Feb 2017, during his quartly dental cleaning, the dentist discovered a small irritated area with bone exposed below the gum line in the wisdom tooth area. She did not name it ONJ until he went back in May. It had doubled in size. Now, June 2017, it has grown to 1/2" x 1" while on antibiotics and an antibacterial oral rinse prescribed by the Oral Surgeon. The goal is to keep it under control as it is very unlikely it will heal. We were told the effects of the Zometa remains in the bones for 10 years.

The ONJ can happen without dental work. It is my understanding that the Zometa builds bone when it is destroyed by the metastasis. The jaw bone is more dense than other bones so as it builds bone, it makes the jaw bone more dense. This continues until it chokes off the internal bone blood supply and it dies. It somewhat shares blood supply through a membrane between the bone and gums. As the jaw bone loses its blood supply, it takes blood supplied to the gum . The gum then gets thin and opens over the bone. It has not been painful but he takes a fair amount of pain meds to control the PCA...this probably helps.

He has another weekly appointment with the Oral Surgeon tomorrow. Will see if it is improving.

This is another byproduct of the treatment of his MCRPC we are still learning about. He has no SRE so the Zometa has done what it was intended to do.

I would like to hear from anyone who is also experiencing ONJ.

[Scruffybut1 in reply to The2ofus]

Thank you for that reply. I am learning more with each response. My operation due mid August and am currently dosing up with Metronidazole a hyper powerful antibiotic to reduce swelling and pain. No alcohol for 2 weeks as the antibug might flip my brain!

[Sisira in reply to The2ofus]

The2ofus,

Thank you very much for your clear explanation as to what one has to experience as a consequence of ONJ when bisphosphonates are taken in high dose over a long period of time. I was really looking for these difficult to heal symptoms not knowing what they really are.

Impressed with your husband's 22 year battle with the Enemy.

My prayers and blessings for his longevity beyond 71 now. And also for his beloved wife.

Once again many thanks.

Sisira

[The2ofus in reply to Sisira]

Thank you Sisira...

[bb66hotflash]

I had a similar problem with ONJ after 30 months of treatment with denosumab. Ended up with ONJ after a tooth removal. Good news about denosumab, is it's half life is much shorter than biophosphonates.

[The2ofus in reply to bb66hotflash]

Did your's heal? What is your treatment?

[bb66hotflash in reply to The2ofus]

I initially had a fractured crown, where the tooth was split into the root. No saving the tooth. I had stopped the denosumab, as soon as thought I had an issue (I was getting 3 month injections). I went back to the Oral Surgeon who pulled the broken crown, and he saw that it was not healing. When you pull a tooth, the cavity left by the root, is supposed to fill in. It was not filling in and on the inside of the jaw, bone started to protrude thru the side of my gum. The Oral Surgeon was not familiar with ONJ. He broke off pieces of the jaw bone on the inside of the cavity in the jaw. I talked to my oncologist and they sent me to an ONJ specialist, who treats all their patients at this Cancer Center. Basically, we just let it heal, until I had one tooth fragment float to the surface of the gum. The ONJ Specialist pulled it off and my jaw continued to heal, since I was no longer taking denosumab. I gathered from my Oncologist, that this issue is fairly common, with patients who end up needing dental extractions.

[The2ofus in reply to bb66hotflash]

Thank you.

[Sisira in reply to bb66hotflash]

66hotflash,

Your experience too is very good for one to learn. Dental surgeons not knowing sufficiently about ONJ is a big problem. Some have not even heard of such a thing! If you have an Oral Surgeon specializing in treating ONJ, it is a great relief.

Thank you for sharing your experience.

Sisira

[Neal-Snyder]

I dodged a bullet. I learned about the ONJ-dental work danger when I started Zometa. But I became more forgetful right after I learned that I had micrometastases at the time of my RP, & it's become worse in the 14 years since. (No dementia, fortunately.) So when I had a toothache & my periodontist told me how much it would cost to deal with the problem (on top of my insurance coverage) vs. what it would cost to have it pulled, & it wasn't an important tooth, I had him pull it. When I came in for a follow-up appointment, apparently he had reviewed my chart better, & saw I had reported I was on Zometa. We were both very alarmed in retrospect, & very relieved that I've had no problems.

I think the frequency of my Zometa infusions every was reduced from every 4 weeks to every 12 weeks around then, & I'm still doing that. I suppose I should ask my med onc how concerned I should be about ONJ, & if there's anything other than quitting Zometa that would reduce the risk. He already told me there's no data on whether it's beneficial after 2 years, & I've been on it for 5 1/2. We believe it's been beneficial in increasing bone density (which had gone over the years of lupron from great to borderline osteopenia), & probably in retarding bone mets.

If anyone has thoughts on whether I should continue, modify (I believe 6 months is an option) or discontinue, I'd be very interested.

Thanks for a very valuable post, David (looks like Paul knows your real name).

Neal

[ctarleton in reply to Neal-Snyder]

Hi Neal,

My original NM Bone Scan lighted up like a Christmas Tree with 20-30 bone mets when my starting PSA was 5,006. I did monthly Zometa for 29 months in a row. At my request, this year we dialed that back to only every 120 days. I've been on it for 3 1/2 years. There really is no data on Zometa beyond 24 months.

Meanwhile, I get 6 month dental cleanings, and the occasional superficial stuff like a crown for a chipped tooth, but no invasive dental procedures. The data on ONJ I've seen shows it as a pretty low percentage occurrence. (I met a woman in a Cancer Support Group in her 70s with a history of breast cancer and Zometa who got a touch of ONJ. Hers was small, was treated, and resolved within a couple of months.)

Charles

[Neal-Snyder in reply to ctarleton]

Thanks, Charles. Maybe my accidental experience shows I'm not a candidate for OMJ, but I don't think I should count on it. I'll discuss with my med one cutting back to 120 days or even 180.

Neal

[Hidden]

My understanding is that pills (eg alendronate) are are safer than IV, and also the longer you take the IV the more the risk piles up. I think it is not a 'half-life" of the drug issue. It is more an issue that the bone created when resorption is suppressed has a somewhat different structure. (my guess)

[Hidden]

My husband had OsteoNecrosis of the Jaw after only 3 Xgeva (denusomab?) injections. It started as vague jaw pain, misdiagnosed as TMJ.

Then something went snap while he was eating - we later learned it was an actual bone fragment right at the chin coming off. Pain, throat swelled up, no diagnosis, confusion - eventually (a long time!) we found an oral surgeon who diagnosed it as ONJ. Also developed bone showing inside the mouth, this is the classic symptom.

Oral antibiotics, two minor surgeries (bone debridement), then six weeks of IV antibiotics cleared it up, no recurrence. Thank goodness.