Blood Cancers & Disorders Support Group

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 ?

Did anyone experience this and what did you hemotologist do ?

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...

Hello everyone,i apologize for my English, we are located in GreeceMy mother was dignosed with PV two years ago.it seems that now the cancer is...

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 will...

Diagnosed with PV two years ago at age 69. Until this diagnosis I had been very healthy my whole life. Never took medication except for...

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

Hello everyone, I would like to share my case and connect with anyone who may have a similar diagnosis or experience. I am a 33-year-old...

I am 59 yrs old male with jak neg polycythemia vera managing with only phlebotomy every 4 to 5 months in last 5 yrs now...

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...

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...

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...

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...

Hi everyone,I am in the process of being diagnosed with PV. I am 26 years old and I am going to be honest , I...

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....

I am in my 80’s and up until a couple years back felt completely normal. I was diagnosed with Polycythemia Vera w/ jak2 app three...