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...

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...

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...

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

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

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....

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

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

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....

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...

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?

Polycythemia with all negative results???????? I am a 29 year old female and have been feeling not myself for almost 2 years now. Below I...

My bone pain with PV is becoming worse. Has anyone found anything that helps.

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...

When is hydroxurea usually added to treatment for Polycemia Vera? I am currently on low dose aspirin

Is there anything I can do for fatigue on a home basis? Diets, iron, anything? I’m low on ferritin, my count was 49.9% so they...