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Krose
Multiple Myeloma Discussion • February 3, 2024
PCL & Standard-Risk Genetics: Discussing Outlook
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I was diagnosed with primary plasma cell leukemia in October 2023. I had about 60% plasma cells circulating in my blood and about 60% plasma cells in my bone marrow. FISH test only showed IGH deletion and no other genetic abnormalities. I did VD-PACE while I was inpatient after being diagnosed. I am in my fourth round of Dara-VRD and have tolerated it well and my kappa light chains have gone from 2,400 at diagnosis to 1.16 now. I am planning on tandem SCT with my first in March. My question to the group is if anyone has similarities in that they have no high risk genetic abnormalities and how you have talked to your doctors about risk profiling. We are higher risk with the plasma cell leukemia (and have shorter OS rates) but with no significant genetic issues and a very good response to treatment, I wonder how that might factor into OS expected timelines. I have asked my doctors some of this and they really don't want to give me any specific information, which I guess I understand, but if there is good reason to believe I might have a good chance of getting more than 5+ years I'd like to know. I am 48 and have 19 and 17 kids and have talked with them quite a bit about my treatment plans, etc but have avoided any discussion on expected longevity and just said it is too early to know much on that. Hope all of you are doing well.
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