Blood Cancers & Disorders Support Group

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...

Hi. Is it possible to have 49.6 hct, 16.2 hb and 5.38 rbc (all over top of ranges) and epo of 3.6 (bottom of normal...

Im 64 got diagnosed with ET about 2 years ago based on blood work (Jak2). My hematologist says I’m textbook ET My count is at...

Hello Everyone, I am 69 yo and I have had ET for 21 years. I am triple negative (NO JAK2, CALR, MPL ). I have...

After 10 healthy years, living with Essential Thrombocythemia w/JAK2 mutation and taking Hydroxyurea, my blood disease has transitioned into Myelofibrosis. I'm now taking Jakafi for...

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

I am 79 with a one year diagnosis of ET JAK2. My platelets were slowly rising for several years before diagnosis and my kidney function...

Hello, I’m 56 and was recently diagnosed with PV, Jak2 positive. I was lucky to catch it at the beginning stages from an annual lab...

‏hello everyone good morning And it’s great to talk to you.At the beginning of 2022, I began to feel terrible pain in my stomach. I...

My platelets have been at the high end of normal (394 to 399) since 2016. A few weeks ago, they were 401. The doctor retested...

Hello, My name is Isabelle, I’m 55 and I was diagnosed a month ago with Essential Thrombocythemia, JAK2 mutation. I’m waiting on my bone marrow...

Hi, I continue to research and learn from others with ET. I am 57, and diagnosed this past year. Jak2 positive, ET. I may have...

A year and a half ago, I presented a hemoglobin of 7g with no evidence of bleeding in upper or lower GI as per scans....

Hello, I am wondering what the symptoms are of beginning spleen involvement in ET. I was dx'd with ET in 2013 . My Internal Medicine...

I learned I had ET through a routine blood test during my annual Medicare checkup last fall. Since then I have found I have the...

Hello, I have just been diagnosed with MPN with JAK2 mutation and negative for the other BCR/ABL 1 mutations. Platelets are 639 on 4/22/24. Everything...

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 taken Vonjo (pacritinib) a JAK 2 Inhibitor? If so what were the effects and how long were you able to take the medication?...

I was diagnosed with Essential Thrombocythemia a few months ago, and I’m positive for JAK 2. So far, I have a “mild” case (platelets are...

We all know when we’re sick, right? Well, I’m sick, but I can’t get a diagnosis of my illness. My symptoms have been going on...