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OSTEO NECROSIS due to bone meds?

amontro
amontro Member Posts: 184

I've posted several times in the past using ZOMETA as a subject. I am stage 4, still on chemo and ARIMIDEX every three weeks. Since 2009, I was receiving an infusion of ZOMETA every 12 weeks. I began having "problems" in my mouth shortly after. I complained to my ONCOLOGIST and she wanted me to stay on it. Due to the side effects, I was told not to have dental work because the jaw would break down or collapse. I stopped the Z August 2019.

Years ago, I came down with an ulcer on the roof of the mouth. I could not find a dental surgeon who would touch me. I still have the ulcer. In 2019, my left lower jaw was in pain and eventually I saw an Infectious Disease specialist, the only medical person who would treat me. I could no longer see her after March 2020 because she was needed by the CDC for COVID. She prescribed AUGMENTIN and I was on it over a year. My rear lower jaw was breaking down and I was in a lot of pain and on A continuously for more than a year. I have bones growing out of my gums on that side.

I finally found dental surgeons at a major medical facility 2020. They pulled my wisdom tooth but they cannot remove the bones in my gums because of the fragile situation of my jaw. Since the small bones stick out near my tongue, the side of my tongue feels like I have razor cuts on it and I've had ulcers on and off. I'm still in a lot of pain to this day and back on Augmentin. I've been told this will be ongoing, no end in sight.

My ONCOLOGIST told me that no one has been on ZOMETA long term so she didn't know what to expect. This is only a short version of what has happened to me because of Z. Please be careful.

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Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,648

    I don’t know if all bone strengthening drugs increase the chance of developing osteonecrosis (ONJ) of the jaw, but it is a known side effect of many. I was on an older drug, Aredia and my mo had me stop after 3 years. Zometa is newer but ONJ, though not common, is a known side effect of bone strengtheners. I am sorry that you have had to go through but somewhat surprised that your mo wasn’t aware of this. Take good care of yourself

  • Lee64
    Lee64 Member Posts: 113

    Amontro, I have osteonecrosis of the jaw too. I was on Xgeva shots once a month for about 6 mos. when I developed an abscessed tooth. I saw an oral surgeon who extracted the tooth but the gum didn't heal. I was prescribed a mouthwash and took penicillin. This was in June and it still hasn't healed. Last month I developed a sore spot under my bottom partial plate and another spot of ONJ had developed followed by an abscessed tooth near it. My ONC has scheduled a face scan for tomorrow so hopefully I will get some answers. I hope to have this tooth removed in the next week or so if my labs are okay. You mentioned ulcers. Do they feel like a crust or callous on your gum? I have something like that on the bottom. My oral surgeon said it takes a long time for ONJ to resolve. Good luck to you.

  • fredntan
    fredntan Member Posts: 237

    if you'll havnt found us on FB

    I made a group for us called


    Living with osteonecrosis of jaw


    I really wish there was more research and treatment options on this. It sucks big time.

    I know the drug companies could do more

  • olma61
    olma61 Member Posts: 1,016

    Really sorry you have to go through this. It's a good warning for some of us to not stay on it indefinitely.

    I was on Xgeva for almost two years. I went off to get a tooth fixed, (was off for four months before having the work), had one shot some months after that and needed more dental work so I've been off for a year. I am glad I am taking a break. My onc wants me back on at some point but I need to get the rest of my work done and have a few months off again after it. Don't want any emergencies at the wrong time.



  • amontro
    amontro Member Posts: 184

    Lee64, the ulcer on the roof of my mouth is like an open sore that never heals. I have to keep it clean. Because my body is getting rid of the Z bones on the inside of my gum, there is friction on the side of my tongue that is sore and painful constantly.

    The bones have to fall out naturally. To have them extracted might cause jaw collapse. I am back on Augmentin because the bones shifted again. My dental surgeons have even suggested cutting out a piece of my tongue if it turns worse.

    All my many docs are concerned that I've been on Augmentin for so long,, since its pretty strong, but none of them have another answer.

    First a mastectomy, then a tongue-economy.

  • lehrski
    lehrski Member Posts: 68

    My oncologist would like me to start on Prolia (Xgeva). The risk of side effects makes me very, very nervous ...

  • moth
    moth Member Posts: 3,293

    lehrski, just fyi prolia and xgeva are not the same. They are the same drug, but different dosage & scheduling.

    Prolia is 60 mg given every 6 months. I think most people taking Xgeva get 120 mg every 4 weeks. I've been on Prolia for 2 years now with no prob.

  • minustwo
    minustwo Member Posts: 13,002

    I've been on Prolia for 5 years now. I've had no problems, but I do understand I should NOT have a tooth extraction until I'm 6 months past my last shot. That's according to my periodontist who facilitated root canal with no problems just before I started Prolia. All my docs say 10 years is probably OK now. I'm seeing a 'bone endocrinologist' later this month to get the benefit of his expertise before I agree to continue past the five years. And to see what I should do regarding a 'drug holiday'.

  • amontro
    amontro Member Posts: 184

    it sneaks up on you. First, small manageable things happen. Then matters get worse and progress even if you go off the drug. I started ZOMETA in 2009 and stopped it 2018, when it got worse. I am still battling OSTEO NECROSIS and there is no end in sight. I am being monitored on a continual basis, to prevent eventual jaw collapse. Report any sores, burning and tori in any part of your mouth. I even had bone pieces embedded in the roof of my mouth twice so far. Stay safe.

  • minustwo
    minustwo Member Posts: 13,002

    I saw a bone endocrinologist who specializes in osteoporosis, bone drugs & esoteric things like ballet dancer's legs & runners bones. Basically he told me Prolia is now rated safe for 10 years. I just completed year 5. You should NOT miss your 6 month shot by more than a few weeks. If you contemplate a drug holiday, there isn't enough information yet to say a Reclast shot would work, although there are ongoing trials with results maybe in the next year. His recommendation was Fosamax in the interim if you have to stop Prolia, which you can now take once a week.

    If you have to have dental work done on Prolia, schedule the last 4 weeks before the next shot is due (5 months). But do NOT skip a dose.

  • SusanR
    SusanR Member Posts: 59

    I developed ONJ while on Zometa. I can’t remember the exact year, but maybe 2015 or 16. It appeared after a potato chip pierced my lower gum where I was minus a tooth. It was an ugly infection and my breath was horrifying. The Zometa infusions were discontinued permanently. My Mets have been confined to my bones for 12 years. I was started on Augmenting and remain on that today. I was lucky to have already had an Oral Surgeon at the time and he manages all my dental issues now. I also see an Infectious Disease Dr when needed. The original site didn’t heal and eventually a large piece of bone worked itself out of the gum and that has now closed beautifully! I now have another site in my upper jaw that has a broken tooth still attached to the bone. The tooth can’t be removed because the Oral Surgeon feels if he extracts what little is left it will bring the bone with it and that will expose my sinus to a hole! sometimes I feel like if it was just the cancer my life would be so much easier. It’s all this other bulls#$&t that takes such a toll.

    I was also told that they don’t know how long these drugs stay in our systems and it could be something years later that sets it off. Have others heard that?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,648

    I was on an older bisphosphonate, Aredia, for almost 3 years. My mo had me discontinue it not only because of ONJ risks but the risk of spontaneous femur fracture as well. I have not been on any bone strengthener for almost 7 years

  • simone60
    simone60 Member Posts: 952

    Hi Susan. I had ONJ also. It's all healed now. I was taking xgeva for bone mets but my oral surgeon told me it was most likely caused by the zometa I took during my first dx. My oral surgeon told me that zometa has a long half life and can stay in your system up to 20 years. Xgeva has a 7 year half life.

  • olma61
    olma61 Member Posts: 1,016

    Good info, Simone, and glad to hear you are healed up.

    I always wonder if having a DEXA scan is of any use in knowing whether or not I really need to continue bone strengthening drugs. I’m still off of Xgeva but I am supposed to go back to it at some point.

    I have never talked to my MO about that. I would like to explore further. My “healed” lesions are still visible on scans. I guess that means those areas are weakened but I really don’t know

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,648

    olma,

    It is my understanding that bone mets remain visible even when not metabolically active.

  • simone60
    simone60 Member Posts: 952

    Hi Olma, yes the bone mets will always show on your scans even if they are not Active and healed. The way my MO explained it to me is it is similar to when a bone gets broken. It heals but they can still see where the original break was.

  • Lee64
    Lee64 Member Posts: 113

    I have had ONJ since last June. It started after I had an abscessed tooth extracted on the top and then it appeared on the bottom gum. I had been on Xgeva for about 6 mos. I just saw my oral surgeon last Friday and it hasn't gotten better or worse. He said some people heal faster than others and I happen to be slow. In the meantime I read that if you have bone mets you should be on a bone strengthener. I'm wondering if I am not adequately fighting the bone mets if I can't take Xgeva?

  • simone60
    simone60 Member Posts: 952

    Hi Lee. It took a year before the dead bone worked it's way out of my jaw. Did your oral surgeon tell you not to take Xgeva? Xgeva works well on bone mets. My surgeon told me I could take Xgeva but there was no need since my mets are resolved. The only advice I have for ONJ is to keep up with the oral hygiene so it doesn't get infected.

  • Lee64
    Lee64 Member Posts: 113

    Simone80, when I saw my oral surgeon last Friday and he told me I was a slow healer, he said he would contact my MO about the situation and that the MO would have to decide what to do about the Xgeva. I can't believe I would be put back on it while I have ONJ, but what do I know? I try my best with oral hygiene with brushing and prescription mouthwash but that's not 100% guaranteed to stop an infection from happening. I want someone checking it.

    I'm glad your situation resolved, even if it did take a year. Hope all is going well for you!

  • amontro
    amontro Member Posts: 184

    Just an update on my ONJ. I still have bones sticking out of my rear gums. When the side of my tongue scrapes on the bones, especially during allergies, my tongue gets inflamed. Augmentin is the only thing I can use til the pain subsides. I am beginning to get severe side effects from the Augmentin, so at first irritation, I put prescription lidocaine on a gauze square, and fold it so that it covers the gum with the bones sticking out. It's pain but it works. I still have routine visits to my Dental Surgeon. It's going to take a while before the bones fall out.

    I'm also having some irritation with the ulcer on the roof of my mouth. Eight years ago, this was my first indication of a problem with Zometa, even though I was not aware of it at the time. I was supposed to have it stitched but the Dental Surgeon I had then wouldn't touch me. Right now the DS is just keeping an eye out for me. Fun times in dental land.

  • amontro
    amontro Member Posts: 184

    I have some new facts about my osteo necrosis.

    I was on Augmentin and in pain with my left jaw for most of 2020. After I went off of Augmentin in December 2020, my jaw felt better.

    After my infusion January 2021, the ON pain and swelling flared up again and went back on Augmentin. I started keeping notes. I realized that after my infusions every three weeks, there was pain/swelling 3 days afterward.

    Instead of continuing with Augmentin, which was making me sick, I used gauze with lidocaine to cover over the gum and under my tongue to prevent chafing which caused the pain.

    I'd also like to add that I believe that my pain may have to do with my airborne allergies which tend to swell my glands under my tongue and in my cheek. When I report this to any of my doctors, all I hear is "crickets".

    My latest infusion of herceptin was on Thursday. The painful symptoms have been with me since then, and today they should abate.

    Osteo necrosis is a serious side effect. I am still being monitored for it by oral surgeons, and I still have the tiny bones protruding from left molar area. They are supposed to fall out naturally, but there is no time limit. That probably won't be the end of it because no one knows what else can go wrong.

    Still to be addressed is the ulcer on the roof of my mouth which has been there since 2011.

    Please be informed if you are on bone meds and talk to your doctors. Short term may be all that is necessary and effective.


  • pessa
    pessa Member Posts: 137

    Thank you.

  • gonegirl
    gonegirl Member Posts: 1,022

    Ok. This is convincing me. I don't have active bone mets (that I know of) so think it's time to stop the zometa. I get it every 6 months (my preference to cut on ONJ risk) but still. Started it after getting a spot on my rib radiated so it's been about 5 years.

    I recently had to have a wisdom tooth extracted and a root canal. Both scared the bejeebies out of me due to risk of ONJ. Things seem to be healing ok, but sheesh. This cancer stuff is sucky enough as it is. ONJ on top of that? Who needs that. What a horrible balancing game we have to play.

    Susan


  • lillyishere
    lillyishere Member Posts: 769

    One of our sisters posted the link below and I found very helpful. I am a Zometa user myself, every 6 months for 3 years. It stays in the system for 10 years.

    https://melioguide.com/osteoporosis-prevention/osteonecrosis-of-the-jaw-and-osteoporosis-drugs/

  • fredntan
    fredntan Member Posts: 237

    I had onj also. From summer of 2016

    It started as gnawing pain in my left lower jaw....farther than my last tooth...#18...

    I was a xgeva user...had been on it monthly about 3 yrs then.

    I had been informed of risk of onj. I had fabulous dental care. Saw my dentist twice a year.

    The first dentist said no...I did not have onj....he did a total of 2 maybe unnecessary root canals on me before I wised up. He made the pain worse

    There would be a total of 7 ish dental professionals. Lots of mistakes.

    Those 250 CT panograms were never able to be read by the next dentist.

    Finally about a year into it the oral surgeon at the dental school knew what was happening.

    I started using a waterpik near the end. The dead bone had gotten so big food would get stuck in it.

    Then 2 days before I saw the dental oncology professional....the dead bone popped off. There was healed pink tissue under it.


    The dental oncology doc explained something had caused a break in the mucousa of my mouth. This caused bone death...infection settled in. The body had to push this thing out...my body took 16 months to do this.

    No one knew if I should stop xgeva. I finally made the decision. About 6 months after I stopped xgeva the dead bone popped out.

    I asked the SABCS that was presenting the findings to everyone in a 1 hr zoom a few weeks ago. I asked him if any thing was being done about this horrid side affect.

    He replied well its only 1% of these bone drug users, and they usually have poor dental hygiene and they tend to be smokers. I have never smoked! I took Excellent care of my teeth.

    This has got to be the worst side affect...besides the atypical femur fracture.

    Maybe if we started demanding more research be done on these?

    I have tried unsuccessfully to reach out to anyone in the big cancer groups...like komen etc...but I don't know anyone in them.

    Bite wing xrays also used to bite into my jaws. They have padded ones I have found. This could be a potential cause of ONJ?

  • amontro
    amontro Member Posts: 184

    fredntan -

    Wow, can I identify with your situation. As I've mentioned before, enter my name in the Search and you will read in different threads my journey with this awful disease.

    I stopped Zometa in August 2018, and in September, the pain and deterioration began. I was in pain daily because my gum kept getting infected. I couldn't eat solid foods. Because of the infection, I was on Augmentin almost daily for over a year. Medical professionals were telling me that taking Augmentin too often was no good, but there was nothing else to stop the infection and pain. Every dental surgeon in my area that I saw or called would not touch me.

    Originally before I was able to find a dental surgeon who would see me, I saw an infectious disease specialist. She knew nothing about Zometa, but she treated me for the infection for which I was grateful. As Covid came along she had to work for the CDC, so I stepped up my search for a dental surgeon and was finally seen by a local major hospital with a new adult dental surgery group. When I was able to get off the Augmentin, I was prescribed lidocaine which I put on a folded piece of gauze to numb the pain.

    Late last fall, a small piece of bone fell out of my lower rear jaw (where my necrosis is), but there are quite a few more tiny ones sticking out. As a matter of fact, I developed a new ulcer in that jaw and a piece of bone is sticking out of that too.

    Another thing happened just last month. A bone popped out of the roof of my mouth. I started out in 2010 with an ulcer on the roof of my mouth, and soon a small sharp bone had been protruding from it all this time. In the last few years, I have had bones pop out of the roof of my mouth on either side at different times, in different areas.

    I see the dental surgeons for routine check ups and if I have a problem. They tell me it's not over yet. There is no telling what else can happen. I have sad stories from my dentists if you want me to post.

    Also, I have taken excellent care of my teeth and still have them all, except for the one above that I mentioned, and never smoked. My dental nurses praise me for the care of my teeth.

    I really feel for you, and post again if you need me.

  • fredntan
    fredntan Member Posts: 237

    Amontro, do you have FB? I started a private group there...would love to have you join? its called

    livingwithosteonecrosisofjaw

    I have been reaching out to the researchers...anyone that will listen really? This is the dangest worst side affect? and all we get is crickets? Did you file with the FDA? you know your adverse drug reaction....


  • moderators
    moderators Posts: 7,689

    fredntan, feel free to start a "group" here as well !

  • olma61
    olma61 Member Posts: 1,016

    amontro- wow you have been through a lot . It must be tough staying on augmentin so long, i would be wearing depends if I had to, i barely get through 10 days when i have to take antibiotics.

    That response from the sabcs presenter is classic victim blaming. Wow.

  • vlnrph
    vlnrph Member Posts: 479

    This topic is now on my (wish it wasn't!) favorites list. I need a tooth extraction due to decay under a crown. The rotten area, curiously also seen on a recent PET scan, is in my maxilla. Bridges filled gaps from genetically missing teeth until I got implants.

    That option is not possible any more. My oral surgeon is quite knowledgeable, a dual degreed DDS and MD. With my long history of extensive dental work, Xgeva might have been a better choice since denosumab does not remain in bone for decades.

    Oncologists should better understand the consequences of putting so many on IV bisphosphonates. Since new therapies let metastatic people live long enough to get older we are more likely to develop jaw problems than when we died after 3-5 years…