Plasma Cell Leukemia

Posted by 19lesterk @19lesterk, 3 days ago

Hi! My dad unfortunately was just diagnosed with Plasma Cell Leukemia. I've come to find that this is an extremely rare diagnosis, so naturally I have a lot of questions that I'm not sure can really be answered. My dad is only 44, so I just want to make sure he can get the absolute best care possible. I'm trying to research the best providers for this type of cancer, but I'm not really finding any that specialize in PCL. Is it safe to assume that doctors who specialize in Multiple Myeloma also have experience with PCL since they are related cancers? How can I get him transferred to receive care at Mayo Clinic if that's ultimately what my family decides is best? He's been admitted to the hospital for over a week now, and we haven't made much progress on getting him established with an oncologist to receive chemotherapy. There are so many unknowns right now, and I'm not happy with the level of communication from the hospital he is at in Nevada. The oncologist that is on my dad's care team has told our family he's had patients become "cured" of MM and "doing very well" with PCL. All of my research suggests that he is not being very truthful or transparent with my family about my dad's prognosis. We're very unsure of next steps. We don't know if he's going to be receiving a stem cell transplant, we don't know what chemotherapy regimen he will be started on, and we haven't gotten a good answer on what his prognosis might be. Does anyone have any insight on any of this?

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