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’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 received my diagnosis with no symptoms on Nov 30 2023, recently in the last 2 weeks I have had extreme fatigue at 6:30 at night and I weird burning tingling feeling under my skin. Does this mean it is processing? Should I call my doctor?

I am hoping someone can help. I am 37 years old, and had a bone biopsy a few months ago to see if a vertebral lesion was malignant. It came back negative for a metastasis, but showed myelofibrosis. I was referred to a hem/onc who does not think it's an MPN because of my age. I just did 23 and me DNA testing, and it came back positive for the JAK2 mutation. The hem/onc now wants to do a bone marrow biopsy, but I don't think it's necessary as I have all of the diagnostic criteria for Primary… read more

I was diagnosed with ET two years ago and have been on HU 500 mg per day since then. I had been having night sweats a few years before but as soon as my platelets dropped below 400 the night sweats disappeared. However; as soos as my platelets rise again they are back. Worried that's a sign I am progressing to MF.

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.

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

Diagnosed ET, JAK2, PLT966 WBC11.6, hematocrit 44.9. These are all trending up each lab.

I am 44 and considered low risk as i have never had a stroke but i do have symptoms including mild pain in left side, some tingling in my arms and feet on occasion, headaches, occasional blurred vision more than usual, night sweats, tinnutis, fatigue and very mild fibrosis in the bones. I wonder if my ET is becoming PV too with my numbers.