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@mjpm2406

I have MDS/MPN-RS-T which is an extremely rare overlap disease. I have multiple gene mutations on both the MDS side and the MPN side. The RS-T component is Myelofibrosis. I take one Hydrea 500mg tablet 5 days per week and two Hydrea 500mg tablets on Tuesdays and Fridays. I also take a daily low dose Aspirin every day. I get blood labs every month. I get the burning in my feet and calves but not sure if it’s related to the MDS or MPN disease. I underwent a whole Exome Sequencing test which indicates I have Sensorimotor Axonal Polyneuropathy, CMT2 and CMT4B which are PN diseases. It’s complicated but so far it’s bearable. Hopefully, the blood cancer won’t mutate to full blown CML requiring a stem cell transplant.

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Replies to "I have MDS/MPN-RS-T which is an extremely rare overlap disease. I have multiple gene mutations on..."

I have PV and have burning in my feet and calves. I’m taking Jakafi and low dose Aspirin.

Going for another bone marrow aspiration and molecular panel on November 29th at Sloan. Plus something called a Koch procedure. Anyone know what that is? Apparently, my red blood cells are too large and I have a high number of immature white blood cells.