• kathyinmccook's Avatar

    kathyinmccook posted an update

    I was diagnosed in November after having much pain in my left hip. It took two months for them to diagnose me. Much lost time, but am doing well with treatments. Relivad and Dex and an infusion once a month to strenghten my bones which has helped so much. I keep posative and pray and am enjoying my time with my husband and family. I quit work and plan to just live and take care of myself. No side effects, but I do take alot of naps.

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    • Karen4's Avatar

      Oh, nice that you were able to quit work. You mus be on biphosphinate(SP?) infusions for your bones. I'm on Boniva because they currently have 4 patients with jaw necrosis, a possible side effect of the infusions. (necrosis is tissue dying due to lack of blood flow). I'm suprised you can sleep on the Dexa. It's my least favorite drug in the entire treatment. It makes me stupid and jittery and stupid and bloaty....the list goes on. I hope I NEVER have to take it again!!! You can go tomy page and see my journey. Two failed chemos then a clinical trial which included the Revlimid) that worked so I could have a stem cell transplant that put me in a stable partial remission. I'm on Revlimid as maintenance therapy. Mine is an aggressive/resistant form of the disease, so I'm happy they were able to suppress it and give me more time. Not sure I'd be here typing this if they hadn't. My bone marrow was 94% plasma when I was diagnosed, so any progress is good in my book. I'm a little younger than you, but not by much. I want to meet my unborn grandkids some day, and the transplant may allow me to do that now. Hang in there and take care of yourself. That's something the disease taught me-it's ok to take time for ME and take care of ME. I still take others, but I've let go of the guilt of living my life in a way that makes me happy and include time for me. I didn't do that so much before-it was always about others.

      about 9 years ago