I'm relieved, disappointed, concerned and overwhelmed--all at the same time. The long awaited meeting with Dr. Tricot yielded a mixed-bag of good and bad news. Bad news: apparently my current therapy combination of Cytoxan, carfilzomib (Kyprolis) and dex (CCd) was not as effective as Dr. Tricot had hoped. He told me so at our early
WOW! Some amazing suggestions via comments and email. Our readers are amazing! If you haven't read Tuesday's post, "What's Next," and the insightful comments that followed, do it now. Time well spent--and you'll be lost today if you don't. I'm not sure I even know where to start. I could spend a week's worth of
I held up surprisingly well on my trip home to see friends and family. My energy level was good, despite taking pomalidomide (POM) daily. But my bone pain has reemerged with a vengeance--and I'm not sure why. As is the case with most myeloma lesions, I’m not in pain when I’m sitting or lying down.
Last week I wrote a pair of posts about the good news I received from my myeloma specialist, Dr. Melissa Alsina, at my quarterly appointment. She described my myeloma as "stable disease." Velcade and dexamethasone alone are--thus far--able to keep my myeloma in check without adding Revlimid. But living with myeloma is a lot more
I work hard not to make this site "all about me." But I wanted to share a short update about a few recent health concerns.Two weeks ago I began experiencing acute pain in my upper right leg and hip. It got so bad I could barely walk. My wife, Pattie, and a fellow muliple myeloma
I recieved this e-mail about myeloma related body scans from multiple myeloma patient Nancy Stewart last week: I just realized recently that when they do the full body x-ray on me that they only do the long bones. They don't x-ray the forearms, hands, lower legs or feet. So, there could have been some lesions in
Yesterday I wrote about a dear friend, Loren Liedl, who recently died from complications caused by his multiple myeloma. Loren was the only multiple myeloma patient I knew before I was diagnosed—we served on the Arnell Memorial Humane Society Board of Directors together . I remember Loren announcing to the Board that he needed to
This morning I thanked the IMF for their work in prodding Medicare into approving the use of PET scans for multiple myeloma patients. Now I would like to add a caution for all myeloma survivors. One of my myeloma heroes, Loren Liedl from Amery, Wisconsin, was hunting in Wyoming last fall when he fell and