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Public Support Group 417 total results
Discussions (55)
Anyone with PV have insensitivity to cold?
I was Dx. with polycythemia vera several years ago, and has been managed well with Hydroxyurea, last summer I was unable to handle the heat...
JAK2 Mutation - Effects and Questions
Have JAK2 mutation verified twice; one year apart and from different labs. As I understand, it may cause polycythemia vera, essential thrombocytosis, or leukemia. My...
Chronic upper body pain-Is it PV related?
I was recently diagnosed with Polycythemia Vera but am waiting for the bone marrow biopsy results. For the last year and a half, I have...
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...
Your tips as I prepare for first phlebotomy
Feb 9, first phlebolotomy (iron is low) Polycythemia Vera and Myelofibrosis - any helpful tips. I have problem with dehydration, (as teenager, I was hospitalized...
After 3 months on hydroxyurea, I am going to ask to switch to Besremi
I was diagnosed with PV in March. When my hematocrit leveled off at around 44 after 10 weeks of phlebotomy, my hematologist put me on...
Sudden gross hematuria
I was diagnosed with MPN JAK-2 last year. Polycythemia Vera and/or essential thrombocytopenia Initially needed 2 phlebotomy’s and 2 Gm/day Hydroxyurea. Labs tanked so slowly...
Anyone else have EXTREME brain fog with dasatinib or imatinib?
https://connect.mayoclinic.org/discussion/anyone-else-have-extreme-brain-fog-with-dasatinibimatinib/
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...
Defeated today
I'm feeling defeated today after working so hard at to remain positive. 3 straight days of feeling dizzy, exhausted and terrified. Reading posts in this...
Can I take Hydroxyurea in a dab of applesauce?
Recently diagnosed with polycythemia Vera (PV). Clinic has not changed, but doctor has. Doctor #1 did a phlebotomy treatment. I am also on Eliquis due...
Am I alone with so many maladies?
20 some odd years ago I was diagnosed with Diffused large-cell lymphoma and through the strength and support of my family and friends (and amazing...
Polycythaemia Ruba Vera, Jak2 mutation & link to Sleep Apnea
https://connect.mayoclinic.org/discussion/polycythaemia-ruba-vera-jak2-mutation-link-to-sleep-apnea/
I was diagnosed with Polycythaemia Ruba Vera with a jak2 mutation almost 2 years ago via blood test of course. I saw a post here...
Jak2 Detected, Healthy otherwise, What's next?
Hi All,Appreciate guidance from this group as I am panicking a bit.JAK2 V617F mutation was deleted in routine blood test. AK2 V617F Percent Mutated Alleles...
Anyone else find the side effects of Hydrea 500MG frightening?
I was diagnosed with having a blood cancer that looks and acts a lot like Polycythemia Vera (PV) about 6 years ago. I’ve been rolling...
Need help newly diagnosed with a high platelet count and the JAK2 gene
Hi, I am new here and need some help. My platelet counts have been running high around 680. I just had a bone marrow biopsy,...
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