Blood Cancers & Disorders Support Group

I was diagnosed in March 2025 with JAK2, TET2 and ASXL1 mutations after a bone marrow biopsy. I have had very high platelets but Hydroxyurea...

I was diagnosed 18 months ago and am a very healthy athletic 68-year-old woman. I have been taking HU 500 mg a day and one...

Hi there, has anybody developed high fever taking hydroxy? Just started treatment for ET

I’m 28 and have not been formally diagnosed with Essential Thrombocythemia, but my platelet counts have been consistently high since I was at least 16...

I recently came across a research study that indicated a connection between essential throbocythemia (ET) with Jak2 mutation and endometerial cancer (EC), and wonder if...

I've been wondering if there are any stats on people who have lived the longest with ET and taking Hydrea? As I hit the 30-year...

Anyone talked to their hemo/oncologist about cannabis? I am having increased anxiety and insomnia, and 5 mg of THC before bed in gummy form once...

I am in the midst of waiting for results of my bone marrow biopsy. At the same time the Dr ordered LOTS of gene mutation...

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

So I shared a bit on here not too long ago about being misdiagnosed with type 1 von Willebrand‘s disease in my early teens, and...

I was diagnosed with Essential Thrombocythemia last November and am on Hydroxyurea 1500mg daily in an effort to reduce my platelet count, still in 9000s....

How can I tell what is causing me extreme joint pain?? Old age, HU or ETJAK2???

I suffer with bone pain in my shins and toes. Dr says not ET or HU, just wondering if anyone else suffers from bone pain....

I am 8 weeks into ET diagnosis. TX plan of 1000 mg HU and aspirin. Now platelets down to 350 but liver panel high and...

My doctor is suggesting I try Interferon instead of HU. I have Essential thrombocytosis Cal-R and have been on HU 1,000 M-F and 500 S...

I was diagnosed with ET 11 years ago and taking Droxia. My current script is 800 mg daily and an additional 200 3 times a...

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...

I don't want to take Hydroxyurea to lower my high platelet count. Does anyone know of a food, vitamin, spice etc that will lower platelets...

In March 2025 I broke my upper femur, hip and ankle requiring two surgeries. The repair for my hip involved a "nail"in my femur attached...

I am 71, active, and in relatively good health. I have ET and VW's, my platelet numbers are around 520 with treatment (Jakifi). Im scheduled...