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BrianPP
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My husband (61) )was diagnosed with primary Plasma Cell Leukemia in Jan. 2014. Since then he has undergone 4 rounds of VDR induction therapy, tandem auto SCT's ( initial protocol called for auto followed right away by allo, but response was so good that decision was made to do tandem autos) and is now going through 2 rounds of VDR consolidation therapy to be followed by continual VR maintenance. He has responded very well and statistically has been in CR since before his first sct.
My question revolves around the lack of information, clinical trials and statistics on primary PCL. Is there anyone, anywhere studying this? The clinical trials are all designed for MM patients and we've only found 1 which allowed pPCL patients, and that was for newly diagnosed. As you're aware, pPCL is extremely aggressive and time is of the essence once diagnosed - my husband was diagnosed and started chemo 2 hours later- not a lot of time for research. How can we facilitate more studies geared specifically to pPCL? Is anyone attempting to compile statistics regarding this disease? I've been able to locate 4 other pPCL patients around the world! and unfortunately! that number just dropped to 3. It appears that all have received differing treatments so, even within the US so it appears that there is not set standards for pPCL patients. What can we do to try and bring this horrible disease to the forefront of medical research?
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