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Public Support Group 2,373 total results
Discussions (135)
Essential thrombocythemia: Interested in connecting with others
I am interested in connecting with others with this illness. I was diagnosed this summer with ET and have been to see two hematologists here...
Philadelphia chromosome: Anxiety awaiting diagnosis
I’m so confused..googling way to much and having so much anxiety.. I was referred to oncologist with a high platelet count. I’m 61 and never...
GI issues after 7 months on Hydroxyurea - What’s next?
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...
Hydroxyurea Reaction
My wife, Pam is recently diagnosed with ET. Three weeks ago she was out on a fairly high dose of HU(2000 mg/day) because her platelet...
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...
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...
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...
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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