Blood Cancers & Disorders Support Group

I am a PV patient, currently age 50, JAK2 verified, producing a tremendous amount of red blood cells (started treatments at a 72% Htc). Besides...

I feel like an island. Doctors refer to me as a unicorn because I’m so rare. I shouldn’t really exist at all! I am a...

I’ve been getting treated for strange heart anomalies for nearly a year now and been consistently getting labs will elevated RBC, hemoglobin, and hematocrit levels....

I am PV JAK2 and live at an altitude of 6000 feet. Could this altitude harm my condition? What altitude should I avoid?

Hi. I’ve been struggling with Polycythemia Vera for 2 years. My treatment began with phlebotomies, but not helpful. Then put on Hydrea, but caused multiple...

500mg a day, then bumped up to 1000mg, now at 2000mg. Fortunately, my body is tolerating the meds so far. But last week, they attempted...

My husband was recently diagnosed with polycythemia Vera, (PV). Dr started him on Hydrea 500 mg twice a day and a phlobotomy procedure every two...

Did anyone experience this and what did you hemotologist do ?

Hello, friends! I am a 50 yr old PV patient currently on Hydroxy and aspirin. I recently did the Cologuard test and received results stating...

Just wondering if anyone else is struggling with PV, very low-iron and Hypothyroidism? I’m feeling like I’m on a never ending merry-go-round with trying to...