polycythemia vera

I was diagnosed with PV 9 months ago and am trying to get up to speed. Just discovered myMPNteam. I’m curious for those that have been dealing with this for longer, at what point is drug therapy recommended? My doctor said it was preferable to do phlebotymys to keep HCT below 45, 40 even better. But as I read some of the stories here I see many people on drug therapy. Appreciate any wisdom

Hi All,

I am a 62 y/o law student. Over the last nine months or so, ever since my polycythemia diagnosis, I have noticed trouble recognizing, remembering, and naming other law students on my campus. These are people I feel I should know. I wonder whether my blood-sludge is decreasing oxygen transport to my brain. I worry that this problem will get worse and affect my capacity for critical analytical thinking.

Online reading has not indicated polycythemia as a reason for such memory trouble… read more

Besremi

I started monthly phlebotomy for polycythemia just last spring. My physician initially prescribed sessions when my hematocrit is > 52. I argued against such a high hematocrit requirement. So, last month she dropped it to 45%, meaning I can have them whenever my hematocrit is > 45%.

What are your hematocrit boundaries for phlebotomy? Any advice?

Feeling that TMB (too-much-blood) feeling only my fellow MPN friends would understand.

I found out I have hypothyroidism, I had a hysterectomy in November. It is not as bad as last year, but continues to happen. Was hoping someone can provide some guideance.

I was diagnosed with ET in 2019. My platelets were elevated (600's). This was found with routine bloodwork - led to appointment with hema/oncologist and more bloodwork which showed CALR mutation. I am basically asymptomatic, currently taking low dose aspirin. My doctor has mentioned starting hyrdoxyurea when I turn 60 (currently 58). This lead me on to further research. I had no idea this was considered a cancer until I looked up hyroxy! I've been spinning down a rabbit hole ever since… read more