Happy first day of spring!
I live in Connecticut, close to NYC or Boston.
Does anyone have an MPN specialist that they love and would recommend in this area?

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

Went to oncologist appt today. Platelets have lowered to 751. Dr. prescribed hydroxyurea 3 times weekly. Concerned with my LDH level that has risen to 449. Has anyone else LDH level been a concern or even discussed?

Is there any info about IF and 2/3 days fasting (only tea). NL doesn’t have any info about this. I have to start with med, but want to maybe postpone this.. try to create the best bloodwork possible..Is this possible via fasting! I know about the Mediterranean dieet. Pleas can you make me happy with an advise? Thanks

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’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 curious about people's use of various meds for PV, when they've transitioned to a different medication, and what they transitioned to. I'm currently on 1000 mg of Hydroxyurea and phlebotomies, am very iron deficient, and miserable (fatigue, nausea, headaches, itching, and night sweats).

Has anyone seen any interesting definitions of what causes MPN-related fatigue? I would like to learn more about it, not just hear experts say that it exists without saying anything about why. 😇

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

How often do I see them? I’ve read some ppl just see an MPN Specialist and stop seeing a Hema.

Should I see both? My Hema doesn’t put forth much effort or time it seems, like a lot of Western Med. Dr’s.