Blood Cancers & Disorders Support Group

Can any tell me if sore finger tips plus elevated hgb, hct, hx DVT, severe itching, with a warm shower would need a workup for...

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...

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 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...

Did anyone experience this and what did you hemotologist do ?

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...

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...