Blood Cancers & Disorders Support Group

I was diagnosed with Polycythemia Vera several years ago and my treatment regiment has been regular phlebotomies (generally about every four weeks.) I needed to...

I was diagnosed with POLYCYTHEMIA VERA in 2017 at age 57 and shortly thereafter with RA (I am on Rinvoq for RA). I was and...

My wife, Pam had a follow-up appt on Friday, due to extreme weather and bad roads, it was rescheduled to afternoon. We repeatedly asked about...

Had a bone marrow biopsy done in 2017 and was diagnosed with MGUS. Additional BMBs in 2018 & 2019 showed a slow progression of my...

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...

There is no known cause for developing Polycythemia Vera but I suspect that maybe too much exposure to radiation might bring on this blood disorder....

Anyone out there that has all three of these conditions - how are your conditions managed and measured? Currently on Jakafi - iron/ferritin level rising...

Hi my hematocrit has been high for a few years, and cardiologist suggested it see a hematologist. My pulmonologist did a sleep study and found...

Have been diagnosed with polycythemia Vera recently, Any feed back

While I know JAK2, TET2, CALR, etc. are the most common genetic mutations in PV, does anyone else have it with the HFE gene (with...

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?

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

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...

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...

Newly diagnosed and am considering getting another tattoo but concerned about whether tattooing is problematic

what foods should I eat ?

What is the latest information about jajafi and blood clots in treatment of Polycemia Vera?

Has anyone been experiencing Nueropathy with PV? The tops of my hands and feet/ shins are burning. I’m having tingling in my face also. I...