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This sucks - Osteonecrosis of the jaw

emiliamarty
emiliamarty Member Posts: 31

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.

Comments

  • moderators
    moderators Posts: 7,889
    edited August 2023

    @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

  • maggie15
    maggie15 Member Posts: 846

    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.

    https://utswmed.org/medblog/osteonecrosis-jaw-treatment/

    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.

  • emiliamarty
    emiliamarty Member Posts: 31

    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

  • vlnrph
    vlnrph Member Posts: 487

    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.

  • emiliamarty
    emiliamarty Member Posts: 31

    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

  • maggie15
    maggie15 Member Posts: 846

    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.

  • vlnrph
    vlnrph Member Posts: 487

    bump

  • vlnrph
    vlnrph Member Posts: 487

    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.

  • emiliamarty
    emiliamarty Member Posts: 31

    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.