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IceSk8Girl
Multiple Myeloma Discussion • June 26, 2024
My Positive Journey with High-Risk Myeloma
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I was diagnosed in February 2022 with -17,+1q LLC (HR) myeloma. My lambda counts were above 9000mg/L with 80-90% marrow involvement. I did 1 cycle of VrD and then 3 cycles of Dara VrD. The LLC numbers dropped precipitously with the Dara at first, then leveled off. To prepare for ASCT, I had to go through 2 rounds of chemomobilization to get enough stem cells. I lost my hair from this, even though they said it would not happen until the ASCT. After ASCT, my LLC count was just below 300, which was still very disappointing. I was afraid maybe the whole stem cells process was a failure, but my Myeloma doctor was not worried. She put me on "intensive maintenance" of Dara rD - recommended for HR people. My lambda counts started going down further! Th ASCT regimen included Busulfan treatment as well as the usual Melphalan (again, something used for HR people here at M.D. Anderson in Houston), which my Stem Cell doc said would make my remaining myeloma more sensitive to further treatment. It did, but it also made my liver sensitive, so my maintenance was changed to just Dara + Dex once per month. I am happy to share that my LLC numbers keep going down and were just 63mg/L (last month) I am feeling great and able to travel and do my activities, including figure skating. I am so happy to have the daratumumab antibody and am optimistic about all the research and development of CAR-T, the bispecific and even trispecific antibodies that are reported here on Health Tree. Fighting myeloma is a difficult road to be on, but focusing on the positives of each day is the way to go. P.S. I would love to hear how other HR people are doing. -Leslie
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