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OSTEO NECROSIS due to bone meds?

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  • amontro
    amontro Member Posts: 184
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    vlnrph -

    You have it right. After my oncologist finally gave in to stop my Zometa and after she saw the damage it caused, she said she didn't think I would be around long enough to have consequences. In the meantime, the damage was done.

  • iwrite
    iwrite Member Posts: 746
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    Vnrph- So sorry you are facing this. Glad your doctor is knowledgeable. Xgeva is high dose denosumab. Prolia is lower dose denosumab. I had been off Xgeva for six months and the blood test still showed I wouldn’t heal.

    Hope you find a good answer!


  • Cocogal
    Cocogal Member Posts: 25
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    Iwrite,

    May I ask when you stopped the Xgeva were you moved to a bisphosphonate?

    My doctor is changing me from Xgeva to Zometa, though not very quickly, as it has been two months since my last injection. At the first of the year my insurance wouldn't pay for Xgeva.

    I've read where stopping Xgeva can have a rebound reaction, something to do with RANKL, and vertebrae may fracture months later. The paper I read recommended bisphosphonates immediately upon ceasing Xgeva. Also saw an oncologist in a video say the same.

    Thank you for sharing the name of the blood test, found on the Ibrance thread. So hope I won't ever need it.

  • vlnrph
    vlnrph Member Posts: 487
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    Something else to consider, warn others and educate oncologists about is following Zometa (even after a single infusion) with a switch to Xgeva. Because of their different mechanisms of action, that move has the potential to actually increase osteonecrosis. It's sort of an additive effect so don't do it!

    The SABCS speaker was probably quoting the annual risk for spontaneous occurrence, without a trigger like tooth extraction. It also accumulates over time - after 3 years on IV bisphosphonate, I have a 3% chance of ONJ. Or he was thinking of people on an oral version which is much safer.

    Trouble for us is that having invasive dental work multiplies the chance up to tenfold resulting in a 20 or 30 per cent 'opportunity' for poor healing and other complications to show up. It's a horrible statistic when you realize how decent treatment is seriously lacking for this incredible problem…

  • iwrite
    iwrite Member Posts: 746
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    I’ve been on a six month schedule with Xgeva for the past four years after two years of more frequent doses. I waited seven months last time due to dental work. (Had a root canal instead of extraction).

    I’ve also read about rebound fractures and hesitate to ever go off the drug as a result.

    I suspect ONJ is much more common than estimates show because many of us are living longer with bone Mets and bone strengtheners

  • edge_of_no_return
    edge_of_no_return Member Posts: 41
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    following. amontro you have been so very kind to give feedback on my panicked tooth extraction post - i appreciate tremendously and pain for your situation. for readers of this thread - i just started taking arimidex this past december and have not started bone strengtheners which seems to have been a fortuitous coincidence as i had to have a tooth pulled 2 weeks ago. i have to have another molar pulled and i'm loathe to start the bone meds, at least until my jaw heals from the extractions and of course i have no earthly idea how that works. gonegirl how has your healing been?

  • jons_girl
    jons_girl Member Posts: 444
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    hi all. I don’t take a hormone blocker. I’m not on a bone strengther. I’m osteopenia status. I don’t want osteoporosis. So what is a person supposed to do when these ‘bone strengthener’ drugs are pushed by medical professionals??

    What would you do in my shoes??

  • amontro
    amontro Member Posts: 184
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    As we post back and forth with this topic, my lower left jaw has undergone changes. The two areas where the bones are sticking out are further out in 2 spots. I have been in constant pain for two weeks as the points of the bones are scraping the side of my tongue, and the gums and tongue are staying inflamed because it cannot heal. I'm back on Augmentin and put lidocaine on a piece of gauze to drape it over the area where the bones hit the tongue.

    I saw a dental surgeon a few days ago, and she told me "It's good news." Since the bones are sticking out more, it means they will be loosening and fall out at some point. She stressed again that pulling the bones out now would be detrimental to my jaw. Although doctors are worried about me being on Augmentin so often, so long, I have another prescription for it and lidocaine. I use a salt water mouth wash and when I lie down at night, the pain subsides somewhat.

    Most of you on this thread are making informed decisions for yourselves. As I said, keep asking questions. I'll be seeing my primary on Tuesday. If she has anything to say (which she won't), I'll post it here.

  • gailmary
    gailmary Member Posts: 426
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    I think I'm caught up reading everyones posts on this topic. Still confused about what to expect. Yes I know we are all different. All my research suggests there is no standard treatment for this.

    At this point I have no exposed bone yet. But pain in jaw since July with antibiotics 3x for pain and swelling. Friday's cone CT from Ododontist suggests osteomyelitis. Waiting now to hear from OS. Ododontist thought maybe removing dead portion of bone and antibiotics and maybe hyperbaric oxygen. But he said it's not his field. It's relayted to onj. I think it's early stage onj.

    I'll be anxious to hear what OS suggests. Thinking of second opinion for this.Vlnrph, who are you seeing? You are in SE Wisconsin, correct? Who do you see?


  • rah2464
    rah2464 Member Posts: 1,192
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    Jons Girl - keep a food diary to make sure you are getting enough calcium in your diet. You need 1200 mg a day - hard to get through eating most of us have to supplement to get there. Make sure you get supportive vitamins (D, K2, Mg, etc) that assist your body in processing the calcium properly. Then exercise daily. My endocrinologist says weight bearing a must. Best is brisk walking. Running is second due to injury risk. Yoga is good - the strength poses like tree. Get a small Kettle bell and do some squats. You aren't in osteoporosis yet which is wonderful news. I wasn't able to stave off moving into osteoporosis I think due to the tamoxifen as I was pre menopausal. I just had my second reclast infusion so we will see if this will turn the tide. I am doing all the other things religiously now.

  • amontro
    amontro Member Posts: 184
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    After being in constant pain for 6 weeks with my gums and tongue, one of the tiny sharp bones fell out this morning.

    I still have a nearby gum with bone protruding and hope that will come out soon.

  • gailmary
    gailmary Member Posts: 426
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    Amontro, I'm having trouble keeping everyone's stories separate. You've had quite a time of it. I can't believe Dr's kept you on Z for so long. My OS said the dead bone will flake off. Tgat would mean in several pieces. Yuk. Really makes it ongoing. How many pieces have come out so far? How long from the time they are exposed till coming out completely. Didn't anyone file down sharp edges? I guess I have an idea what to look forward too. Yet we're all different. I hope it will be easier for you going forward. Sometimes the more you know the ...

  • edge_of_no_return
    edge_of_no_return Member Posts: 41
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    Anna - agh! man do i hope you got relief when the pieces came out. the fact that 2 1/2 months i just learned what osteonecrosis of the jaw is and what it entails just *blows my mind*. and oh gailmary, i am so very sorry you are on the same path. what happens if you accidentally swallow a bit or does that happen or ? makes my hair stand on end. thank you both again for weighing in on my tooth extraction debacle. i still can't believe my mo didn't even mention it when i told him the tooth had to come out - it turns out he does have patients with the condition. it's so hard to know where he's coming from. grateful for your help.

  • amontro
    amontro Member Posts: 184
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    Edge and gailmary -

    The bones are usually too small to cause any real damage. The bone that came out last week was so small, but it had a point sharp enough to scrape my tongue and cause pain..

    The bones cannot be filed smooth (I asked) because any invasion of those bones can affect the jaw bone. In other words "Don't poke the bear!".

    As I mentioned, I was diagnosed and given Zometa in the dark ages (beginning January 2009.) every week for 5 years; then every 12 weeks in 2014 until 2018.

    You guys have a much better advantage over me. More doctors and dental surgeons are aware of the side effects nowadays.

    Still waiting for the other shoe to drop - the bone under my molar is not sharp so far, and I expect it to fall out soon. I know you can't wait to find out what happens! I can't either.

    Love and blessings,

    Anna

  • edge_of_no_return
    edge_of_no_return Member Posts: 41
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    hi Anna - thinking of you. i had another molar yanked out. i've labeled this experience as "Molar Madness". how are you doing? my lovely, wonderful personal trainer (sounds so bougie, trust me it's not) gifted me with an incredible Cuisinart juicer since i haven't been able to eat much for the last couple of months. i'm not one for 'fads' but man has this been a blessing. do you have any interest in such a thing to bolster your nutritional landscape?

  • amontro
    amontro Member Posts: 184
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    Hi, Edge -

    I'm not a smoothie type of person. I like the sensation of crunch, which I stay away from when my ONJ flares up.

    During those times, I relied on scrambled eggs, cream of wheat, yogurt, tomato soup, low-sodium V-8 as a vegetable substitute.

    So far, I still have only one bone left to fall out and it's in there very firm. I hope this is the last because this one flared up in November!

    If you don't get a response from me, don't forget to write me in the Private Messages.

    Good luck, and take a "bite" out of life!

    - Anna

  • gailmary
    gailmary Member Posts: 426
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    just a quick update. I saw oral surgeon the other day. He is "still optimistic" that my jaw pain won't developed into full blown onj.

    Meanwhile, I pray.

    Gailmary

  • amontro
    amontro Member Posts: 184
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    gailmary -

    Good for you!

    I'm sure with today's new tech and med discoveries less of us will fall victim to severe side effects.