Hello all, let's starts by saying how grateful I am for this group. I enjoy knowing I can go here and ask questions with overwhelming and writing my own family. You all are my MPN family.🥰 So I am 47 and I am a teacher, and the teachers Union President and the head of the World language department and a mom of 2 and I'm getting older. So everyone understands that by itself is stressful. My question is, how do I know if what I'm experiencing is a new symptom or just life, I'm guessing I go with… read more

My Hema said I could do it in their office. I’ve heard it can cause iron deficiency, anemia, loss of nutrients.

But it’s gotta be less toxic than an Rx, right? Seems all options have pros and cons? Some better and worse than others.
Thought this could be a good place to start for if and when I’m told baby aspirin isn’t enough.

New to all this mess and just started baby aspirin Jan. 31 but don’t even want to be on that.
🤷🏻‍♀️

I have had ET since 2001, on hydroxyurea almost since the beginning and have just recently been diagnosed with PV.

My hgb and hct have been stubbornly high over the summer, with three increases to my hydrea in the past 6 weeks that have not significantly lowered them.

Had my first phlebotomy on August 11th, my second yesterday, am scheduled for a third on 9/5 and these will continue weekly (with labs preceding) until my hgb is down to a level acceptable to my hematologist.

I have tolerated… read more

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.

The drs tell me pv is super rare but that IM rare because I am only 32. I started having a ton of symptoms during the covid shut down..broke out in shingles for the first time, insane pain in my neck, upper back, ankles and knees, migraines every other day, brain fog, extreme fatigue and serious memory issues. So that was 2020 and I JUST FINALLY got a diagnosis this year! Its been a really hard few years getting through countless tests, phlebotomies and finally a bone marrow biopsy trying to get… read more

I’ve just started hydrea after two years of venesections and monitoring of my PV. Bloods are now in the red zone and finally have been taking the proffered hydrea. A few days in, I am struggling with extreme tiredness and low level dizziness. Can anyone tell me if this is normal in the early weeks of taking hydrea 500mg daily?

I'm on pegasys 135 since December and after an initial drop, my counts are back to their initial levels
Despite my mpn consultant, which is abroad, told my hemae to just wait at leat 6 months to see how it goes, my docs here (I live in a different country) are rushing to conclude the treatment is not effective, and don't want to wait as told them
They are thinking to escalate to 180 for the next two months, and if nothing happens, drop it and then they said that based on current research… read more

Hate to bring up perhaps a touchy subject, but has anyone out there had experience with cannabis as a treatment for chemo side effects or even for MPN symptoms? Since I live in Maryland there is no longer legal issues, no particular stigma since majority of voters gave a go ahead on legalizing the product. For obvious reason, there is little to no hard data on this issue. Need to know what anecdotal info there is.