Blood Cancers & Disorders Support Group

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...

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...

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

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...

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, am I crazy? I'm a 23-year-old biological female with a complex medical history. I'm going to list my pre-existing conditions, before I started hematological...

HiMy mom (74) was diagnosed with PV (aug 2024). Hemotologist believes it may have had PV since 2022. She did the Jak2 test and she’s...

Hi All. Finally have formal diagnosis on several things. See title. Plus CHIP and chronic anemia. I can't find care. Not sure what to do....

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...

Anyone with Polycythemia Vera (PV) or Myelofibrosis (MF) with JAK2 verified mutation, please share with me your JAK2 allele ratios while taking Interferon-Alpha (INN). I...

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...

I was recently diagnosed with Polycythemia Vera but am waiting for the bone marrow biopsy results. For the last year and a half, I have...

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

My husband was just diagnosed in December with CML. He has also had Polycythemia Vera for 25 years, managed well with medication, most recently Jakafi...

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...

Recently diagnosed with polycythemia Vera (PV). Clinic has not changed, but doctor has. Doctor #1 did a phlebotomy treatment. I am also on Eliquis due...