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Profile picture for Lori, Volunteer Mentor @loribmt

Good morning, @hanya. Thank you for such a sweet reply. Having gone through and survived my own blood cancer odyssey gave me the opportunity to pay it forward. As with so many other members here, we’ve ’walked the walk’ and in the unique position of being able to offer support and hope where we can. ☺️

It sounds like you have a great team of doctors at Yale. Having a specialist in MPN/MF is a huge advantage so that you get the right diagnosis and treatment. They’ll do their utmost in keeping you healthy so you can watch your grandsons grow up! What a special incentive for you to keep moving forward and staying positive! Our attitudes can make an enormous difference in how we cope with the challenges tossed at us.
Wishing you only good news on your upcoming BMB! ☺️
Please let me know how everything goes! I didn’t ask before, but have you been on any treatments for your PV?

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Replies to "Good morning, @hanya. Thank you for such a sweet reply. Having gone through and survived my..."

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