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Public Support Group 2,620 total results
Discussions (151)
Multiple Stress Fractures while on meds for Essential Thrombocytosis
Two years ago I suffered a stress fracture of the tibia plateau while riding my bike through sand, since then I have 4 other stress...
Hydroxyurea and ankle ulcer
Has anyone had a painful ulcer (that won't heal) suddenly show up on your ankle, after taking Hydroxyurea? I was diagnosed with ET and had...
INCA033989 therapy to watch for CALR+ MPN patients
INCA033989 is a new drug that targets the CALR mutation in patients with MPNs (especially ET and MF). Something to keep an eye on, especially...
Essential Thrombocytosis symptoms
Having had high platelets since 2017 and doctors could not find a cause I paid to see a haematologist and I was diagnosed with ET...
Essential Thrombocythemia, anemia and Celiac Disease, the Trifecta
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...
Anyone have CALR mutation with constitutional symptoms?
About 4 months ago I had some disturbing symptoms like headaches, vertigo, back pain, I still have left shoulder pain that radiates down my arm,...
Hydroxyurea vs Agrilyn: Anyone switched from HU to Agrilyn?
I’m a 71 y/o male with ET. Diagnosed in 2015 with all the requisite tests including bone marrow biopsy. I have the CALR mutation. I...
JAK2 V617F Essential Thrombocythemia: Hydroxyurea causes headaches
On routine annual labwork in December of 2022, platelets were elevated (over 600 X1000/UL). At referral appointment with a hematologist in January 2023, platelets were...
MPNs - I have so many questions.
Hello, my father(73yo) was dx with MPN -PV in Oct 2024, long story short, my dad has hx of cardiac disease (triple bypass in 2013,...
Soft-Tissue Masses Not Diagnosed
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...
CALR exon 9 mutation w/translocation of chromosomes 10 &13
I'm 57 (58 in February 2026) and was diagnosed with essential thrombocythemia about six months ago, after genetic testing it turns out I have a...
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