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My mom has Polycythemia Vera: Can PV be managed without phlebotomies?
Blood Cancers & Disorders | Last Active: 9 hours ago | Replies (42)Comment receiving replies
In the beginning I had just phlebotomes ever week and each time it got longer and longer until one day it was 5 needles in my arms and 2 hrs long .then with more hydroxarea increased over time everything came into spec.But every one is different.Now on jakifi and working great.
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@albertedward
I was moved from HU to Jakafi because a bone marrow biopsy showed elevated TET2 and ASXL1 mutations. I had just come done phlebotomy treatment once a week for a month as well. Now my Jakafi (Ruxolitinib) medication has been withdrawn for 3 weeks so my platelet count comes back to normal--went down to 79 in two weeks.
If you are in your first year of diagnosis, remember it takes time to get the numbers to settle down and the medication dosage figured out to maintain the desired numbers. It was not required for me to have a bone marrow biopsy, but I wanted a benchmark of the marrow condition and it was the smartest move I made early on. It doesn't hurt and usually insurance pays for it if the doctor recommends it. Luckily my insurance does cover Ruxolitinib because it is extremely pricey.
Best to you and anyone navigating this little studied disorder/cancer.