Anyone had ONJ now back on Exgeva?

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Artygirl
Artygirl Member Posts: 5
edited June 2018 in Bone Health and Bone Loss

My DH has stage IV with bone mets. Was on Exgeva for 2+ years and developed ONJ. He stopped Exgeva and has been taking antibiotics and using the mouth rinse for 11/2 years. It has healed pretty well (Yay!) and now onc wants him to start back. (Mets are growing and he's having trouble with chemo). We are seeing his oral surgeon for his opinion tomorrow but I wanted to know if any of you have experience going BACK on Exgeva after experiencing ONJ, or know if there are increased risks of it returning?

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  • fredntan
    fredntan Member Posts: 1,821
    edited June 2018

    Hi,

    I am curious too. My oncologist says the xgeva provides a protective coating over bones. I had ONJ. You may be in my FB group Living with Osteonecrosis of Jaw.

    I am scared to be on it, scared to be off. But now that I know how to manage ONJ I think I may go back on...at least twice a year. I am NED 4 yrs now. I have 2 ONJ specialists. the younger one said its okay. the older one said No. There is specialist at UCLA. would like to know what she says.

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