If you are on zometa....

CypressCynthia
CypressCynthia Member Posts: 4,014 Member
edited March 2014 in Breast Cancer #1
I printed out the info in the link below and printed it out for my dentist. He has agreed to put off any dental work that we can. I see the hygienist every 6 months religiously. Jaw necrosis is more common if you take zometa and have cancer and good oral hygiene is a must. Brush and floss frequently and use a mouthwash that does not have an alcohol base. Report any symptoms immediately. Symptoms include:
pain, swelling or infection of the gums or jaw;
gums that are not healing;
loose teeth;
numbness or a heavy feeling in the jaw;
drainage;
exposed bone.

Here is the link for the dentist: http://www.boneandcancerfoundation.org/pdfs/osteonecrosis.pdf

Here is an excellent link with more info from the ADA:
http://www.ada.org/sections/scienceAndResearch/pdfs/patient_64.pdf

Hope this helps to keep my zometa buddies strong!

Comments

  • ohilly
    ohilly Member Posts: 441
    #2
    I know
    Yes, I know about ONJ and guess what, I have it from Zometa infusions. I was in clinical trials for zometa (for prevention) and after 2 years, had a terrific jaw pain. I saw a specialist who noticed exposed bone in my mouth and diagnosed ONJ. This specialist (at the University of Illinois Dental School - I live in Chicago) told me this condition (known as BRONJ, or Bisphosphonate Related Osteonecrosis of the Jaw) is more common than you would think - it is underreported, not 'rare,' as the drug companies would have us believe. She told me that even people who takes drugs such as Boniva (in the same class as Zometa) orally develop the condition. It does NOT always follow an invasive dental procedure as the drug companies (yes, I am angry at the drug companies) would have us believe. Mine developed spontaneously - I did not have any dental procedure.

    So far, I just have to be monitored every 3 months by the specialist and the condition is not really causing me any pain or trouble. My jaw pain went away after the exposed bone broke through, and the bone is just there in my mouth, but not bothering me. I use a special rinse and good oral hygiene. The big question to which no one knows the answer if it will spread.

    If anyone else out there has BRONJ, please communicate with me on this forum or PM me. I am very bitter against Novartis: yes, I was told this was a possible side effect, but it was in fine print and I was lead to believe that it was extremely rare and happened only after a dental procedure (not true). I have read articles since I was diagnosed by prominent dentists and oncologist that estimate the incidence of BRONJ as being between 8 and 12 per cent. This is NOT rare!

    Does anyone else share my anger at drug companies? I find out more from this website than I do from my doctor or Novartis.

    Ohilly
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #3
    ohilly said:

    I know
    Yes, I know about ONJ and guess what, I have it from Zometa infusions. I was in clinical trials for zometa (for prevention) and after 2 years, had a terrific jaw pain. I saw a specialist who noticed exposed bone in my mouth and diagnosed ONJ. This specialist (at the University of Illinois Dental School - I live in Chicago) told me this condition (known as BRONJ, or Bisphosphonate Related Osteonecrosis of the Jaw) is more common than you would think - it is underreported, not 'rare,' as the drug companies would have us believe. She told me that even people who takes drugs such as Boniva (in the same class as Zometa) orally develop the condition. It does NOT always follow an invasive dental procedure as the drug companies (yes, I am angry at the drug companies) would have us believe. Mine developed spontaneously - I did not have any dental procedure.

    So far, I just have to be monitored every 3 months by the specialist and the condition is not really causing me any pain or trouble. My jaw pain went away after the exposed bone broke through, and the bone is just there in my mouth, but not bothering me. I use a special rinse and good oral hygiene. The big question to which no one knows the answer if it will spread.

    If anyone else out there has BRONJ, please communicate with me on this forum or PM me. I am very bitter against Novartis: yes, I was told this was a possible side effect, but it was in fine print and I was lead to believe that it was extremely rare and happened only after a dental procedure (not true). I have read articles since I was diagnosed by prominent dentists and oncologist that estimate the incidence of BRONJ as being between 8 and 12 per cent. This is NOT rare!

    Does anyone else share my anger at drug companies? I find out more from this website than I do from my doctor or Novartis.

    Ohilly

    Many of us do not have a
    Many of us do not have a choice in taking this drug as bone cancer is worse to deal with than the jaw necrosis. I only put this info out to help those of us who have no choice. So no, I am not so interested in sharing your anger with Novartis as I am in fighting for my life. Sorry.
  • carkris
    carkris Member Posts: 4,553 Member
    #4
    CypressCynthia said:

    Many of us do not have a
    Many of us do not have a choice in taking this drug as bone cancer is worse to deal with than the jaw necrosis. I only put this info out to help those of us who have no choice. So no, I am not so interested in sharing your anger with Novartis as I am in fighting for my life. Sorry.

    I take it twice a year for
    I take it twice a year for prevention, but plan to continue keeping this in consideration. thank you both
  • ohilly
    ohilly Member Posts: 441
    #5
    CypressCynthia said:

    Many of us do not have a
    Many of us do not have a choice in taking this drug as bone cancer is worse to deal with than the jaw necrosis. I only put this info out to help those of us who have no choice. So no, I am not so interested in sharing your anger with Novartis as I am in fighting for my life. Sorry.

    Novartis
    Okay, you have to take it for bone mets. I understand. But don't you still think the drug company has an ethical responsibility to properly inform and not underemphasize people of a drug's side effects? This does not mean you have a choice in taking it, but it would still help if people were properly informed.

    Ohilly
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #6
    ohilly said:

    Novartis
    Okay, you have to take it for bone mets. I understand. But don't you still think the drug company has an ethical responsibility to properly inform and not underemphasize people of a drug's side effects? This does not mean you have a choice in taking it, but it would still help if people were properly informed.

    Ohilly

    I am so sorry that you are
    I am so sorry that you are having to deal with the jaw necrosis, Ohilly. I pray that the drug does keep you from ever having bone mets. I was in remission for 22 years before having bone mets.

    As far as the Novartis stuff, I always go to epocrates to check out serious side effects and zometa has a rather long list of serious side effects, including osteonecrosis of the jaw and kidney failure.

    However, your dental specialist telling you that the jaw necrosis is more common is anecdotal evidence, so I can't comment on that.

    But I do believe that the very best thing that any of us can do after experiencing a serious drug reaction is to report it to the FDA. I have done it before myself after I experienced severe vertigo from mobic. See:

    http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm
  • ohilly
    ohilly Member Posts: 441
    #7
    CypressCynthia said:

    I am so sorry that you are
    I am so sorry that you are having to deal with the jaw necrosis, Ohilly. I pray that the drug does keep you from ever having bone mets. I was in remission for 22 years before having bone mets.

    As far as the Novartis stuff, I always go to epocrates to check out serious side effects and zometa has a rather long list of serious side effects, including osteonecrosis of the jaw and kidney failure.

    However, your dental specialist telling you that the jaw necrosis is more common is anecdotal evidence, so I can't comment on that.

    But I do believe that the very best thing that any of us can do after experiencing a serious drug reaction is to report it to the FDA. I have done it before myself after I experienced severe vertigo from mobic. See:

    http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm

    FDA
    Thanks for your support, Cypress Cynthia, and for the link: I definitely will report it to the FDA. I also wondered: what kind and stage of bc did you have initially, and what kind of treatment, and did you notice a symptom that then lead to being diagnosed with metastasis. You're in my thoughts. We have to support each other here, whether it's ONJ or stage 4 bc. I was stage 1, but BRCA 1 (I had a double mastectomy, one side for prevention, and chemo).

    Ohilly
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #8
    ohilly said:

    FDA
    Thanks for your support, Cypress Cynthia, and for the link: I definitely will report it to the FDA. I also wondered: what kind and stage of bc did you have initially, and what kind of treatment, and did you notice a symptom that then lead to being diagnosed with metastasis. You're in my thoughts. We have to support each other here, whether it's ONJ or stage 4 bc. I was stage 1, but BRCA 1 (I had a double mastectomy, one side for prevention, and chemo).

    Ohilly

    Way back in 1987, I was
    Way back in 1987, I was Stage 3A (large tumor and 4 nodes) and had bilateral mastectomies (not at same time--had the second one years later preventively after 2 sisters diagnosed). I also had CMF chemo (which they don't use much anymore), rads, 7 yrs tamoxifen. Then I had that very long and glorious remission. In 2005, I broke 3-4 ribs. At the same time, Katrina had just occurred (I am just north of N.O.) and we weren't sure if this was mets or from moving stuff around after the storm (probably both). I had my markers drawn (then normal), PET scan, bone scan, CT, etc. All tests were inconclusive. I began being followed by a pulmonologist because there was a tiny pleural effusion on tests.

    The rib pain kept persisting, but it would come and go. In 2009, I went to the ER with pneumonia and severe rib pain. Radiologist said I had bone mets and everyone thought he was nuts. My doc ordered markers again and they were very elevated this time. Repeated bone scan and PET scan--this time all suspicious of mets (fractures should have healed by then). My oncologist wanted a rib biopsy because it had been too long (22 yrs). It took awhile to find a doc who would do the biopsies, but we finally found one. He biopsied 2 ribs that were suspicious on my PET scan. Both were same cancer (ER+) that I had 22 yrs ago.

    I finished rads and am now on zometa and arimidex. I do worry about the jaw stuff as that sounds like a mess, but, right now, I am more concerned with my diminishing kidney function. I see my onc next Friday (15th), so we'll see what he says.

    My ribs are feeling LOTS better and my markers are either normal are near normal. Will go get markers drawn this week, so say a little prayer.

    I am BRCA negative even though my family is riddled with breast cancer. My younger sis had the test too and she tested negative also. My onc says that it is genetic, but they haven't identified our gene yet.

    We do need to stick together! And definitely report your jaw nec as I don't trust the drug companies either. It is kind of a pain to do (if I remember right? as you have to download a form and snail mail it), but it is important so that we get the real stats. Thanks!

    I hope your jaw heals quickly. Do you have to take meds for life? Or how do they treat it? I know you said you could see bone--is that getting better? I am very sorry that you are suffering with this and am sending healing vibes and a cyber hug your way!

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