This sucks - Osteonecrosis of the jaw
After 10 months of bisphosonates I have been been diagnosed with ONJ. 3 weeks of mega antibiotics, everything else except letrozole stopped until this is resolved. A bottle of liquid morphine to add to my collection. (Resisting because it feels too ‘cancery’, if you get my drift.) And more ‘activity’ detected in my bones on the last PET/CT scan, though not enough, I gather, to switch to a second line of treatment. Should I be going out and robbing a bank? Doing something else kind of wild? I have a strong feeling that the odds are not on my side. All this said, the oral surgeon is absolutely the most entertaining and characterful person I’ve met since Stage IV dx last summer. I think I love her.
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@emiliamarty We're so very sorry to hear you're dealing with osteonecrosis of the jaw. This is a terrible side effect of treatment, but we wanted to invite one of our very schooled members on ONJ into the conversation so she can offer advice.
@amontro Do you have any insight for emilia?
Sending big hugs!
—The Mods
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Hi @emiliamarty , Amontro has not been active since 6/25 so here is a link to one of her threads which discussed her ONJ.
My oral surgeon diagnosed osteomyelitis of the jawbone with an open biopsy (he was concerned about ONJ from Fosamax and bone cancer as well.) When mega antibiotics didn't clear the infection he surgically removed three teeth and a section of bone. I then spent a month on targeted IV antibiotics through a picc line and continued opiods with all their SEs. The oral surgeon was convinced my lack of response was due to cancer so he ordered a diagnostic breast ultrasound which revealed a 3.2 cm tumor which had not shown up on several mammograms following a callback. I haven't heard of anyone else whose bc was diagnosed by an oral surgeon.
A year later I had a bridge put in since there was no bone for implants. My mouth has been fine but is closely monitored. They often don't do surgery until the ONJ is at stage 2/3 but this link from an oral surgeon mentions doing it at stage 1 to speed up healing which can take years. There is a chance bone removal can cause a complete jawbone fracture but my oral surgeon told me he was more afraid of brain infection and had rebuilt the jaws of many car wreck victims.
I hope your treatment works since this is one more misery you don't need. It's scary not taking all your cancer meds but there are other things that can get you more quickly. I'm glad you have an oral surgeon you like who is willing to treat you; many people can't find someone to take them on since it's a challenging task. My oral surgeon is my hero.
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Hi @maggie15 and thank you so very very much for this. Thanks too to the moderators, you make me feel like you’ve got my back.
I had no idea that an infection to the brain was even possible, much less having bc diagnosed by an oral surgeon. I think the mega antibiotics are having some effect, in that the pain is more backgrounded and less foregrounded. But the exposed bone seems to have increased in size over the last week, albeit with less inflammation of the gum, as though the gum was peeling back.
I’m less frightened about stopping meds for a while than I thought I might be. I actually feel better in myself for not having them, though the fatigue is very present and very pure. I’ll be seeing the usual oncology team tomorrow and will see what they say.
Still considering robbing a bank!
E x
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Wow, you two both have unusual histories! Although aware of ONJ, I didn’t begin a deep dive into the particulars of that diagnosis and trying to assess my risk until early 2022 when I needed a tooth extraction. Then, this past winter, another had to be pulled. Like yours, my oral surgeon is great but I don’t want to be having annual standing appointments…
I was happy to stop Zometa in 2021 after 36 months & do not intend to resume it. In fact, after the 1st 13 infusions (every 4 weeks), I insisted on a schedule of 3 times per year instead of quarterly. The stuff has a half-life of a decade so is in the body quite a while. We really need decent guidelines regarding length of treatment.
Emilia, did your oncology people have any words of wisdom? Be wary of any suggestion about changing therapy to Xgeva. Maggie, it’s good to hear your infection cleared up with IV antibiotics and that the doctor was forward thinking/proactive in pursuing a “root” cause. That’s a very weak attempt at dental humor. My opinion: if we can’t laugh, we’ll just cry.
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Hi Vlnrph,
That half-life is really shocking. I had one Zometa infusion last September, which led to 10 wild days of fever and projectile vomiting, then 9 monthly injections of Xgeva with no discernable side effects before this apparently spontaneous - ie no invasive dental work or ongoing dental issues - incident with ONJ. I was about to move on to quarterly treatments.
The oncology team are keen for me to get back on abemaciclib/verzenios as soon as I have finished the course of antibiotics and have ruled out any further use of bisphosphonates. I have stayed on femara throughout.
I’m seeing the oral surgeon (same hospital) next month. Now the swelling of the gum has gone down, the amount of exposed bone seems much bigger, which is scary. But simply not being in pain makes me feel almost ecstatic. Yesterday I actually achieved some proper thinking at work, and felt the benefit of resting when I rested, which makes me wonder whether I have been blaming the wrong drug for my fuzzy brain over the last 12 months.
My next PET/CT is early October, and if the increased activity in some lesions in my spine continues to be a worry then I believe we discuss a second line of treatment. I very much want to avoid chemo if at all possible.
The oral surgeon seems to be held in very high esteem by the oncologists.
I must say, I have enjoyed a few weeks off from the legendary verzenios diarrhoea…
E x
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Hi Emiliamarty, I'm glad the gum swelling and pain have decreased. I hope you can get back on Verzenio and it continues to work.
Vlnrph, thanks for the laugh! My MO wanted me to switch to Zometa since I am currently taking alendronate (I cycle on/off) but my endo's opinion was that the small anti-mets benefit was not worth the long half-life. Alendronate is still a problem but it clears your system more quickly. Since my mother and siblings had to deal with spontaneous fractures I have seen the adverse consequences of bisphosphonates.
My oral surgeon is the only one in his practice group of six who will do real surgery. The others make a good living doing nothing but extractions and implants. If anyone is looking for an oral surgeon for ONJ contact the head/neck cancer doctors since they generally have one who works with them.
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This is a review article published 29 August 2023 in Clinical Breast Cancer https://doi.org/10.1016/j.clbc.2023.08.008
Not sure how to make the link live but maybe cut and paste is an option. It’s from MD Anderson titled “Bone-Targeted Therapy Regimen and Skeletal-Related Events in Patients Surviving Longer Than 2 Years With Metastatic Breast Cancer and Bone Metastasis”. Data collected was from 2016 (when their current electronic record system began) until March 2021.
Osteonecrosis of the jaw was seen at seemingly high rates in the 224 subjects studied: 6% for Zometa/zoledronic acid, 11% with Xgeva=denosumab. The authors conclude that additional investigation beyond 24 months is needed.
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Oh my word! That’s terrible! Anecdotally it seemed to be far in excess of the quoted percentage but I’m really shocked. I had no invasive dental procedure. It just happened spontaneously, and that was after 1 x zometa and 9 x xgeva. I’ve been back on verzenio for a month. More bone gradually emerging or being revealed but no inflammation at the moment.
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After teeth cleanings, deep scalings and a root canal my ONJ was spontaneously revealed after an extraction. No inflammation or infection during this entire odyssey through four different dental professionals. Who knows if my initial tooth pain was a due to ONJ? I was on Xgeva for 5 years. I went down from a shot every month to 8 per year at some point. Perhaps we should have reduced my yearly dose earlier? I agree with emiliamarty. Anecdotally, ONJ doesn't quality as a rarity anymore. Especially as we are all living longer and taking bisphophinates or Xgeva for a longer period of time.
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How have you been managing this @onlywhenitrains ? Mine took 13 months to resolve, ‘resolve’ meaning that the splinter of dead bone was then finally loose enough for the oral surgeon to just pluck it out with a pair of tweezers. I absolutely dread another episode of this, and as my third line treatment looks to be failing I see that both of the suggested fourth line treatments - Piqray and Truqap - come with warnings about ONJ, which makes me very nervous about both.
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The tooth pain could well have been caused by it. In my case, there’s a met in my jaw that’s quite nearby too.
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@emiliamarty . My ONJ is being monitored by an oral surgeon once a month. He did pluck out a few tiny pieces on my first visit, but since then more pieces have popped up. I am managing fine as the ONJ pain is nothing compared to the tooth pain. I am on Truqap (second line) and I hadn't heard anything about it being associated with ONJ. There's a Truqap forum if you're interested.
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@emiliamarty My oral surgeon recently confirmed that my tooth pain could have been caused by ONJ. I'm not sure I'm in a position for my ONJ to resolve. However, my appointments were reduced to once every two months. I will be off Xgeva for the foreseeable future. Fine by me. My oncologist admitted that she is uncertain how long the Xgeva in my system will work, but I suspect it's a long time. She said we just don't know right now. Gotta love the honesty. Right now, I am down one tooth with a lot of protruding bone in that area, but it doesn't hurt anymore. I'll take it. My truqap experience has been good so far (except insurance and potentially massive co-pays even with a $4000 grant and a $26,000 co-pay card - come on!) No side effects.
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Really sorry to hear about the ONJ but I’m glad Truqap has been good for you. Every now and then I search to see if there’s been more research into it and it does seem that there is a small but steady increase of interest. I’m currently experiencing jaw pain again, that curves up towards my ear, cheekbone and eye socket but short of a scan I don’t know whether the cause is ONJ or a lesion. Still trying to assess whether I want to take any risk of exacerbating it, however slight, given next line of treatment will be my fourth line, but the alternative I have been offered is taxol so… yikes.
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@emiiamarty, I had three years of NEAD. Bone lesions were treated and liver tunors disappeared .Thank you, Ibrance. However, I always had a palpable breast tumor. It shrunk a great deal during this time, but I could always feel it. After I started Truqap, it was barely feelable. Like it was gone!. I asked my onconologist if this was due to Truqap and she said, "Could be!" I am not concerned about discontinuing Xgeva. I didn't have any bone mets in my jaw, like you did, and I know that treatment decisions are never cut and dry. Just saying that my initial response to Truqap is encouraging I'll let you know more after my next round of scans
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Emiliamarty - I'm on Zometa and I too have a pain around my jaw joint that goes up into my cheekbone and eyesocket. I've never had any mets in that area though, and you are the first person I've known of who has. I have had some long standing off and on TMJ issues (mild and infrequent) for as long as I can remember, and so when I told my onc about it, both he and I figured my issue is worsening of the jaw joint (osteoarthrities from Faslodex) and more than likely not ONJ. I did have a scan early last December and to my surprise, the jaw joint problem showed on the bone scan ("zygomatic bone" lit up), and I of course got concerned, but the radiologist's report said that it was a very rare place for mets to show and that it was not presumed to be any mets. The onc has not been concerned. A scan might be a good thing for you. I hope it is just jaw joint soreness for you and not anything to do with any mets.
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Thanks Threetree. I have a couple of scans coming up. There’s one met in the jaw that I know of, quite near the temporomandibular joint, and another in the clivus at the base of the spine, and the pain does extend to an area which is sort of behind the pharynx and soft palate. I’m about to report the current issues but having snapped two ribs in the last month or so I’m leaning toward it being met-related rather than ONJ related, not that either is appealing.
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@emiiamarty
Truqap failed. On to Enhertu. ONJ is prorgressing. But still no pain. My ONJ is not met related, but now I think quite seriously about quality of life re: ONJ. I have a good team from the dental end of things, but sometimes I think the onc people don't want to think about it.
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@onlywhenitrains I’m so sorry to read this, and I absolutely understand what you mean about QOL and the different perspectives of oral surgeons and medical oncologists. The things that have nearly broken me through this experience haven’t so much been nasty side effects or treatments failing but the ONJ and, lately, shingles. I have just taken my first dose of Truqap, my thoughts being that if the ONJ flared up while on everolimus it could flare up at any time. Really, I’m just trying to delay taxol, which will be the fifth treatment line. From my digging around online, it seems that almost any treatment related to bone mets has been associated with ONJ. I fear we are just stuck with it, and must cling to our nice dental teams and mega antibiotics as needed. I’ve just had radiotherapy to my pelvis and QOL is very low indeed. I really hope that Enhertu is kind to you and proves effective.
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@emiiamarty I wish you the best with Truqap! I found it easy to tolerate and was hoping to stay on it for a long while. Enhertu is my third line and it's still early days. I have not had any skeletal-related events like you have and I do think there needs to be some examination of how long people should stay on bone met treatments. Or at least how long they should stay on a regular dose. I was down to 8 a year, but I wonder if I was "saturated" way before I went for five years on Xgeva. I'm glad you have a nice dental team.
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