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Discussion
Question for 2025 and ET Patients
Just wondering with regards medication in 2025 and what is being used to control ET in the modern world? Have done a little research and...
Last active: Jul 2, 2025
Discussion
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...
Last active: Apr 6, 2023
Discussion
PV JAK2 and evolution of treatment over time
I was diagnosed with PV JAK2 a year ago and have taken HU for six weeks, then had bone marrow biopsy that shows TET2 and...
Last active: Feb 4 9:27pm
Discussion
Polycythemia Vera, Antiphospholipid Syndrome & Hemochromatosis
Anyone out there that has all three of these conditions - how are your conditions managed and measured? Currently on Jakafi - iron/ferritin level rising...
Last active: Feb 25, 2023
Discussion
Teriparatide and ET are there associated risks with this treatment?
I have recently been prescribed teriparatide as an adjunct to Prolia for the treatment of osteoporosis. I have had ET for 5 years and am...
Last active: Jan 18, 2025
Discussion
Anyone else have EXTREME brain fog with dasatinib or imatinib?
My husband was just diagnosed in December with CML. He has also had Polycythemia Vera for 25 years, managed well with medication, most recently Jakafi...
Last active: Jul 15, 2025
Discussion
This is new, overwhelming. Wife is diagnosed with PV, we need support
After a long and stable treatment for Polycythemia Vera, my wife (age 73) has been diagnosed with High Risk Myelofibrosis. Just one month ago we...
Last active: Mar 7 10:02am
Discussion
Essential Thrombocytosis - what's your experience with Jakifi?
I am 74, diagnosed 3 years ago. Only on one baby aspiring daily. But, my itching burning skin is getting almost unbearable on some days....
Last active: Mar 16, 2023
Discussion
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...
Last active: Jun 27, 2025
Discussion
Anyone experienced Bone Marrow Transplant with TP53 mutation?
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...
Last active: Aug 7, 2025