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Your transition from ET to PV--was that new diagnosis from symptoms, blood tests or bone marrow biopsy? I was diagnosed with ET in June 2023 but had higher than normal platelets for years. Only taking daily aspirin since waiting for platelets to reach over 800 before starting HU. I saw hematologist/oncologist last week and shockingly was told actually might have PV. Platelets staying in 600s but WBC, RBC, hemoglobin and hematocrit are showing a trend of increasing every 3 months. Waiting 2 weeks for another hormone test results that might show probable PV. I've done a lot of research on ET but didn't know about this possibility of transition to PV. My doctor immediately ordered HU which I've just started but no discussion of other available meds.
How long from your diagnosis of probable PV did they recommend Besremi? Did HU work ok for a long time with PV or was HU only successful with your ET? This is all news to me--I was just getting comfortable at 73 to living with ET but in 5 minutes last week that all changed. There was no time for questions and I wasn't even prepared to ask questions about a new diagnosis. So back to Mayo chat research.
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Aloha MW2023.. yes. found you!. I had a trend of increased WBC, HCT and within a month's time. So the increase was very slight, but new. I was diagnosed with ET in 1992.. so 33 years ago. I have been on HU mostly since then and I take an occasional ASA. (twice a week). My doctor does not talk to me so when I asked if I was transitioning to PV he said "no" but why would he recommend Besremi when its not approved for E.T. but for PV right now? I am currently looking for another hematologist that will spend more than 2 minutes with me. The amount of time I was on HU seemed like most of my life, and it works well for me, and one point my Doctor said I was "sensative" to it. We tried it more that once a day and I had too many symptoms. My platelets stay below 500 on one pill a day. If I go off the HU my platelets shoot up to 800 or 900 and I have symptoms. (TIAs, Headaches) My advise is to pin down your doctor and ask if transitioning to PV is normal for an ET patient. I had another blood test two days ago and all my counts went back down, including my HCT. So its the TREND that they are looking at to determine next steps. I wish my doctor would have discussed this more with me as well. It seems they only look at the numbers, and not the patient sometimes. What is the Hormone test they are doing? My doctor did not say anything about doing that. Thanks and good luck.. remember you are the patient and we both need to ask more questions as they run out of the room! Leene
Leene Lab 6-16 (Leene-Lab-6-16.pdf)