Questions & Answers

I have ET jak2 positive. Have been taking HU 2x daily for ovver 2 years. I developed leg ulcers in December, so now the dr started me on Besremi.

Hi all,

I have an MPN specialist that I have seen for 3 years and visit twice a year. Recently, my insurance changed as a result of turning 65 and the MPN specialist is not in network. Therefore, I will self pay and see her twice a year. Recently, I made an appointment with a hematologist in network for blood work and for renewing Hydroxyurea script. My question is whether to tell the hematologist that I visit an MPN specialist?

Thank you,

My blood test showed platelets 904,000
The results of a bone marrow biopsy showed that I have myelofibrosis
Genetic test results showed that I was positive for the CARL gene mutation
Yesterday the doctor concluded: MF. (The doctor explained that my platelets were high due to MF)

Hello
My husband has triple negative ET at the moment but still gets very fatigued and when he goes through times he has a virus/cold he becomes abnormally exhausted even more and it takes him more days to recover. I feel an FMLA would help alleviate some stress for him. In case a day off to recover on his worst days happens. Plus he’s having to take off work for blood work follow-ups at least every 3 months now if not sooner. But as we all know this doesn’t account for any specialist were… read more

A friend is advising me to add green tea to my daily drinking water, because she said: "Green tea may be beneficial for people with thrombocytosis in some cases
Antioxidant effects: Green tea contains antioxidant compounds, mainly catechins, which have the ability to protect cells from damage caused by free radicals. This can help reduce the risk of infection and protect organs from damage
Anti-inflammatory effects: The natural anti-inflammatory agents found in green tea may help reduce… read more

I’m hearing a few times now a supplement called Natokinnese can be taken twice a day every 12 hours as a safer, nontoxic alternative to the daily baby aspirin for MPNs.