I have PV with negative Jak2, first diagnosed July 2008, after my Brain tumor (Meningioma) operation March 2008. I had 2 blood clots in my legs and hematoma while in the hospital. Prior to brain tumor operation I had TIA’s, some dizziness, diminishing eye sight in my right eye and numbness feeling on my right side. I take 1000 mg hydroxyurea and 20 mg simvastatin every evening and take 10mg lisinopril and low dose 81mg aspirin in the morning. I have no side affects and feel great. I do alot of walking every day and some hiking and camping during the summer. My concern is taking hydroxyurea, which it is anti-cancer chemotherapy drug.
Seems like no one knows what the long term affect it will have. I would like to hear any discussions on hydroxyurea long term affects.
Contributed by Jennifer Acker
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.