Blood Cancers & Disorders Support Group

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...

Any recommendations for ongoing mild headaches since taking Hydroxyurea (500 mg per day). Trying not to take more drugs Have ET (Jak2) diagnosed August 2022...

I have essential thrombocytosis with CALR exon 9 mutation, no JAK2. I've been taking 500 mg hydroxyurea every other day for 2 1/2 years. About...

Diagnosed with PV with JAK2 mutation In November. Did not do well on Hydroxyurea. I just started BESREMi at 100mg every 2 weeks. I have...

I am ET/Jak2 — 72 years oldDiagnosed July 2024HU 500mg dailyAre the following symptoms from the HU or ET itself:Lightheaded (feel a bit unbalanced/dizzyBrain fogItchyI...

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...

Had a bone marrow biopsy done in 2017 and was diagnosed with MGUS. Additional BMBs in 2018 & 2019 showed a slow progression of my...

I am 72 years old and have ET with JAK2 mutation. I am on HU 500 mg twice a day. I have recently developed a...

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...

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

I have had ET JAK2 pos x 2 yr plts around 500 taking 2 baby asa daily. My Plts jumped to 702 and I was...

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...

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...

My 76-year-old mother (ET, JAK2+) has been on Hydroxyurea (500mg, 3x weekly) for 7 months without prior GI issues. Recently, after resuming this dose following...

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...

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...

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...