Blood Cancers & Disorders Support Group

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...

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...

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...

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

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...

Have been diagnosed with polycythemia Vera recently, Any feed back

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...

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 am 67 and have had a PV diagnosis for about a year. Treating with hydroxyurea and occasional phlebotomy. I have been relatively active all...

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....

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 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...

Has anyone with PV experienced malignant nodule in the lung

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...

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

what foods should I eat ?