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Topic: Anyone had ONJ now back on Exgeva?

Forum: Bone Health and Bone Loss —

Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong

Posted on: Feb 26, 2018 11:15AM

Artygirl wrote:

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?

wife, Stats are those of my DH Dx 4/25/2014, IDC, Left, 5cm, Stage IV, metastasized to bone, 5/5 nodes, ER+, HER2- Surgery 4/28/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Dx 12/2015, Stage IV, metastasized to liver Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Aromasin (exemestane) Chemotherapy Doxil (doxorubicin) Chemotherapy AC + T (Taxotere) Chemotherapy Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Jun 23, 2018 02:22PM fredntan wrote:


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 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.

MBC bone mets, afinitor,aromasin,xgeva Dx 8/3/2011, IDC, 2cm, Stage IIIA, Grade 2, 13/17 nodes, ER+/PR+, HER2- Surgery 9/8/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 3/28/2012 Breast, Lymph nodes Surgery 10/7/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 4/2/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 10/2013, Stage IV, mets Chemotherapy 11/19/2013 Abraxane (albumin-bound or nab-paclitaxel), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy

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