My husband was diagnosed with primary Plasma Cell Leukemia (a very rare variant of MM) in Jan 2014. He underwent treatment with Revlimid, Velcade and Dex, then had tandem(2) auto transplants in May & July, 2014. Two more rounds or R/V/D and then has been on Rev/Vel maintenance ever since due to the aggressiveness of this disease, even though he’s been in Stringent Complete Response, and MRD negative. A BoneMarrow Biopsy in July of 2017 showed new genetic mutations and a Next Gen Sequencing of peripheral blood in Oct showed early stages of MDS. He just underwent another BMB (his 8th -ouch!) which is being tested for both his PCL & MDS. Initial conversations with his specialists show true confusion over how to handle his treatment with his PCL Dr very hesitant to stop the (very effective) Rev/Vel while the MDS Dr thinks it should be stopped. Of course, we are very confused and concerned as to the consequences of stopping the drugs which have (miraculously) kept him alive but which are also causing this secondary blood cancer… while we wait for the new results, we wonder what others have experienced in similar situations. Thanks in advance.
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