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@dancouclanel4

I was diagnosed with JAK2 in early 2021. Taking the drug hydrea has put everything (RBC, WBC, and platelets) back in balance. A bone marrow biopsy revealed that i was also experiencing scarring in my bone marrow - it was in overdrive which is conducive to a 1-3 year life span. So the Leukemia & Lymphoma Society <InformationSupport@e.lls.org> put me in contact with an expert at the OU Stephenson Cancer Center.
Currently I'm attending the Oklahoma Cancer Specialists and Research Institute (OCSRI) and in September 2022 started seeing the OU Stephenson Cancer Center in OKC - comfortably, the two organizations communicate with each other on patients so now i have two sets of eyes monitoring my situation.
Basically, i get blood pulled and reported on every 3 months. Everything has been in harmony for 15 months now. There are back door solutions should hydrea not continue to work. I would never have known about this problem had i not routinely have my blood pulled for analysis because of a testosterone issue. Hope this helps.

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Replies to "I was diagnosed with JAK2 in early 2021. Taking the drug hydrea has put everything (RBC,..."

Hello. I was diagnosed with ET, CAL-R back in July. It was discovered in a routine CBC to check my cholesterol. My platelet count was off the charts...2800. All the blood tests, bone marrow biopsies, etc. combined with other symptoms and more tests discovered aVWD (Acquired Von Willebrand Disease) as well. Another RARE card to draw. Counter intuitively, I am not at risk for clotting but just the opposite. Strange to think I was diagnosed with a disorder that causes clotting issues yet I am at risk for bleeding out. I am also taking Hydrea (1500mg daily and I weigh 105 pounds) which has lowered my platelets below 1000 but probably won't reach normal range because my wbc have dropped as well. We still haven't quite found the right balance of meds but hopefully soon. Blood draws every two weeks. Fortunately my aVWD is actually acquired vs. genetic and I didn't pass along to my kids. Still not feeling lucky with two rare conditions. I have yet to meet someone with ET and aVWD. Exercise does help...clears my head and gives me a sense of control in a world where I don't have control parts of my own health. Two chronic disorders with lifelong chemo drugs. Always trying to stay positive even when I question how and why.