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I was phlobotomized many times! I took HU FOR ALMOST TWO YEARS!!
Reduced need for nasty phlebotomy but did not help burning skin ! Spleen did not decrease and blood numbers were still high !
Started taking JAKAFI! About a year ago! Took 10mgs twice daily! In four five months! It crashed my numbers down below minimum range ! Became fatigued and anemic!! Doc reduced JAKAFI BY HALF !
Taking 5 mgs twice daily!
Controls skin burning! Keeps all numbers steady !
Now ! Up to me now when I go back to YALE TO CONFIRM MF 🥵needed eye surgery so waited ! For BMB . My understanding is that my treatment will not change even if MF IS CONFIRMED with BMB !
My QUESTION IS ! Does BMB GIVE CERTAIN PROGNOSIS?? Another words , how much time do I have !!? Going to my local onc/hem in few days !
Lori !! Thank you again for your prompt response
You are an ANGEL

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Replies to "I was phlobotomized many times! I took HU FOR ALMOST TWO YEARS!! Reduced need for nasty..."

Hehe I’m no angel…ask my husband!! 😇😂 It sounds like you’ve hit a sweet spot with the Jakafi dosage keeping your blood numbers steady! It can take some trial & error & fine-tuning to find the best dosage for each patient. We’re not ‘one size fits all’ when it comes to medicines and treatments.

The BMB will allow your doctor to check the health of your bone marrow. With MF, the usually spongy marrow becomes scarred and fibrous which can interfere with normal blood cell production. So a sample of the marrow tissue and blood cells directly from the source of the blood manufacturing site can give a clear picture to your doctor. It can also help the doctor determine the extent of any changes.

If the Jakafi has been working fine for you and your numbers are remaining steady then I would think, at least in my experience, that it’s encouraging. I’d put those thoughts of ‘how much time do I have’ out of my head and keep living life like ‘they left the gate open’, because no one knows how much time they have left. Heck, any of us could be hit by a bus…with no warning but a horn.
While there’s life there’s hope. But, just to be safe, look both ways when you cross a street. 😄