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nataliek
Multiple Myeloma Discussion • October 22, 2024
Managing Medication Burden: My Positive Story
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I'm a multiple myeloma patient who is high risk - deletion 17p leading to lambda light chain problems. I've been warned many times that I am likely to relapse. Yet here I am almost 5 years since diagnosis and I am still alive and on line 2 of treatment. I had a stem cell transplant. The follow-ups failed and I started daratumumab, lenalidomide, dexamethasone in February 2021. My light chain counts decreased and have stayed low. I've had some infection problems. But what I would like to discuss here is medication build-up. We often talk about disease burden. But what about medication burden? I convinced my oncologist to lower my dexamethasone dose. Then I convinced her to lower my lenalidomide dose. This proved really helpful. My light chain count has remained great - but - and this is important - my blood readings have improved. Even my oncologist is surprised. We are now going to try lowering my daratumumab dose. I will keep you posted. My main point is that medication burden is real and should be considered in the course of treatment.
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