Blood Cancers & Disorders Support Group

There is a drug called rusfertide in stage 3 research. It is showing great promise in managing hemtocrit thereby avoiding phlebotomies. What other info does...

I am being treated with Hydroxyurea. The least bit of exercise results in pain on right side of chest and back, along with extreme shortness...

Hello. I am new to this group and looking to connect with fellow members who are dealing with MPD. I have Essential Thrombocythemia as well...

My spouse has polycythemia Vera, dx about 6 years ago. She did well on hydrea 500mg daily until about 3 months ago. Her platelets began...

I was Dx. with polycythemia vera several years ago, and has been managed well with Hydroxyurea, last summer I was unable to handle the heat...

Have JAK2 mutation verified twice; one year apart and from different labs. As I understand, it may cause polycythemia vera, essential thrombocytosis, or leukemia. My...

Feb 9, first phlebolotomy (iron is low) Polycythemia Vera and Myelofibrosis - any helpful tips. I have problem with dehydration, (as teenager, I was hospitalized...

I was diagnosed with PV in March. When my hematocrit leveled off at around 44 after 10 weeks of phlebotomy, my hematologist put me on...

I was diagnosed with MPN JAK-2 last year. Polycythemia Vera and/or essential thrombocytopenia Initially needed 2 phlebotomy’s and 2 Gm/day Hydroxyurea. Labs tanked so slowly...

I'm feeling defeated today after working so hard at to remain positive. 3 straight days of feeling dizzy, exhausted and terrified. Reading posts in this...

I was diagnosed with Polycythaemia Ruba Vera with a jak2 mutation almost 2 years ago via blood test of course. I saw a post here...

Hi, I am new here and need some help. My platelet counts have been running high around 680. I just had a bone marrow biopsy,...

Hi All,Appreciate guidance from this group as I am panicking a bit.JAK2 V617F mutation was deleted in routine blood test. AK2 V617F Percent Mutated Alleles...

I was diagnosed with having a blood cancer that looks and acts a lot like Polycythemia Vera (PV) about 6 years ago. I’ve been rolling...