osteonecrosis of the jaw

ohilly
ohilly Member Posts: 441
edited March 2014 in Breast Cancer #1
I have not posted for a long time, mostly because I have been doing well...until now. I had stage I breast cancer in 2008, but I had the BRCA 1 gene so I wanted to do everything possible to prevent a recurrence. I had a double mastectomy (one preventive and the other breast was cancerous) and decided to be in a clinical trial for Zometa. For those of you who don't know, Zometa is supposed to prevent recurrence of bc to the bone, one of the first places it usually metastatizes. Just recently I received the devastating news that I have developed Osteonecrosis of the Jaw: I have a small piece of exposed bone just below my tongue. I saw a specialist at the teaching dental hospital in Chicago where I live, and the specialist called it 'Stage I' BRONJ (Bisphosphonate Related Osteonecrosis of the Jaw). She told me she does not know if it will spread or not,but for now I will be monitored by her every 3 months and have to use a special rinse. She reassured me that if it does spread, pain can be controlled by pencillin and in the worst case scenario, if I had to have surgery, the surgery is not disfiguring. So I took away the message that the disease is not curable, but manageable (similar to stage IV bc). I have no pain, at least for the time being.

I am writing for two reasons: one is to tell people that you can get this disease without having an invasive dental procedures - I did not have any dental procedures, and my ONJ developed spontaneously. The second reason I am writing is to hopefully hear from other ONJ patients. I want to know how you fared with time: did the disease get worse, what was the treatment?

I am trying to have a positive attitude: I read some things on the web that if ONJ is caught early and properly managed, the outcomes are usually good.

Ohilly

Comments

  • carkris
    carkris Member Posts: 4,553 Member
    #2
    I am so sorry you have this.
    I am so sorry you have this. I am also on the zometa trial and am concerned about this side effect. What were your symptoms? thank you for the information. I wonder if they will see more of it with more widespread use with this trial? anyway thanks for the info and I hope it is alleviated for you soon.
  • ohilly
    ohilly Member Posts: 441
    #3
    carkris said:

    I am so sorry you have this.
    I am so sorry you have this. I am also on the zometa trial and am concerned about this side effect. What were your symptoms? thank you for the information. I wonder if they will see more of it with more widespread use with this trial? anyway thanks for the info and I hope it is alleviated for you soon.

    What is really scary is that
    What is really scary is that I did not have any dental procedures, yet I developed ONJ anyway. Starting in Jan. or Feb. I started having what I thought were just really bad canker sores. Then one month ago I had the worst pain I ever had in my life in my cheek. I thought I had a bone spur, and when I went to the dentist, she saw a small bit of exposed bone under my tongue. Right now, that is my only symptom: exposed bone, no pain or infection.

    I am also thinking this side effect is underreported and not as rare as the drug companies would have us believe. I hope to hear from someone else who was actually diagnosed with this condition.

    Ohilly
  • ohilly
    ohilly Member Posts: 441
    #4
    carkris said:

    I am so sorry you have this.
    I am so sorry you have this. I am also on the zometa trial and am concerned about this side effect. What were your symptoms? thank you for the information. I wonder if they will see more of it with more widespread use with this trial? anyway thanks for the info and I hope it is alleviated for you soon.

    What is really scary is that
    What is really scary is that I did not have any dental procedures, yet I developed ONJ anyway. Starting in Jan. or Feb. I started having what I thought were just really bad canker sores. Then one month ago I had the worst pain I ever had in my life in my cheek. I thought I had a bone spur, and when I went to the dentist, she saw a small bit of exposed bone under my tongue. Right now, that is my only symptom: exposed bone, no pain or infection.

    I am also thinking this side effect is underreported and not as rare as the drug companies would have us believe. I hope to hear from someone else who was actually diagnosed with this condition.

    Ohilly
  • New Flower
    New Flower Member Posts: 4,294
    #5
    ohilly said:

    What is really scary is that
    What is really scary is that I did not have any dental procedures, yet I developed ONJ anyway. Starting in Jan. or Feb. I started having what I thought were just really bad canker sores. Then one month ago I had the worst pain I ever had in my life in my cheek. I thought I had a bone spur, and when I went to the dentist, she saw a small bit of exposed bone under my tongue. Right now, that is my only symptom: exposed bone, no pain or infection.

    I am also thinking this side effect is underreported and not as rare as the drug companies would have us believe. I hope to hear from someone else who was actually diagnosed with this condition.

    Ohilly

    Hi Ohilly
    Sorry for your medical problem and i agree that side effects of Zometa and other similar class meds have been underreported. I remember several posts on ONJ looking for advice and help. Maybe if you search on it you will find more info.
    Thank you for sharing your story with us. Have you stopped Zometa?
    Hopefully it will be under control.
    Hugs,
    New Flower
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #6
    I am on zometa for bone
    I am on zometa for bone mets, so far so good.

    I went to the dentist before starting the treatment so that we could make sure that any little problems were taken care of BEFORE therapy.

    And I am now a maniac with dental hygiene because I do not want anything to stop my therapy. I have one of those HUGE bottles of Listerine (with a pump) and I rinse my mouth at least 3 X a day (probably have the freshest breath in town--lol). I also floss and brush 2-3 X day. Also, I go for my prophylactic dental appts every 6 months without fail. Coincidentally, I just went this AM and dentist said everything looks good.

    FYI, the Bone and Cancer Foundation has an excellent handout for patient that I printed out for my dentist:
    http://www.boneandcancerfoundation.org/pdfs/osteonecrosis.pdf

    Hope this helps someone else!
  • webbwife50
    webbwife50 Member Posts: 394
    #7
    ONJ?
    I am really sorry you have to go through this too. I am wondering if the Zometa contributed?
  • ohilly
    ohilly Member Posts: 441
    #8
    webbwife50 said:

    ONJ?
    I am really sorry you have to go through this too. I am wondering if the Zometa contributed?

    more information about ONJ
    Thanks for all your comments. Cypress Cynthia, I also tried to take care of all my dental problems before the therapy. I have to say I only brushed and flossed once a day, but I specifically avoided having any invasive dental procedures and yet I developed the condition anyway. I saw a specialist in ONJ at a local teaching hospital who told me it was definitely from the Zometa (my oncologist agreed). This specialist also told me she is seeing tons of people who took bisphosphonates (the class of osteoporosis drugs to which Zometa belongs, also including drugs like Boniva and Actonel) both through infusions and pill forms and they developed ONJ.

    I am not trying to scare anyone off taking Zometa, just provide information. I do not have bone mets, I was in a clinical trial for Zometa to prevent bc recurrence. The good news is that ONJ, while not curable, seems to be manageable. I have a tiny, tiny bit of exposed bone under my tongue which does not bother me or cause me any pain at this point. The specialist said it may stay the same, but it the ONJ spreads, the pain can be managed with antibiotics. The worst case scenario (in severe cases, but she said mine was mild) is that you would have to have surgery, but she reassured me that it is not disfiguring.

    Ohilly
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #9
    ohilly said:

    more information about ONJ
    Thanks for all your comments. Cypress Cynthia, I also tried to take care of all my dental problems before the therapy. I have to say I only brushed and flossed once a day, but I specifically avoided having any invasive dental procedures and yet I developed the condition anyway. I saw a specialist in ONJ at a local teaching hospital who told me it was definitely from the Zometa (my oncologist agreed). This specialist also told me she is seeing tons of people who took bisphosphonates (the class of osteoporosis drugs to which Zometa belongs, also including drugs like Boniva and Actonel) both through infusions and pill forms and they developed ONJ.

    I am not trying to scare anyone off taking Zometa, just provide information. I do not have bone mets, I was in a clinical trial for Zometa to prevent bc recurrence. The good news is that ONJ, while not curable, seems to be manageable. I have a tiny, tiny bit of exposed bone under my tongue which does not bother me or cause me any pain at this point. The specialist said it may stay the same, but it the ONJ spreads, the pain can be managed with antibiotics. The worst case scenario (in severe cases, but she said mine was mild) is that you would have to have surgery, but she reassured me that it is not disfiguring.

    Ohilly

    I am so sorry that you had
    I am so sorry that you had this complication and hope that you have speedy healing!

    I put out my info for newbies. Some folks just get side effects and, unfortunately, you were one of them.

    I don't really have a choice in taking this drug. And that being said, if the literature says having good dental hygiene helps (but obviously will not eliminate in all cases), I am going to be a nutcase with dental hygiene. Because, for me, the worst side effect is the cancer itself.

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