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My husband found out in January he has myelofibrosis, it was a shock to us. He is 80 and too old for BMT. His cancer doctor put him on Vidaza it worked for awhile. Now he is on Vonjo hoping it would bring his platelet numbers up. He is on his 3rd week and doesn’t seem like it’s working. Today he had his 73rd platelet in fusion. If anyone else has experience with Vonjo please let us know.
Replies to "My husband found out in January he has myelofibrosis, it was a shock to us. He..."
@dax1million I did a quick search for you and found several conversations from members who have questions or shared experiences with Vonjo (pacritinib).
Here’s the link to the discussions: https://connect.mayoclinic.org/search/?search=Vonjo+
Feel free to tag any member by clicking the blue reply box or by typing in their full @name…including the @ sign. That way they’ll be sent a notification that they’re being tagged. Let me know if you need help, ok? Hugs.
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@dax1million
WOW ? 72 platelet infusion!!
How low are his platelets?
Mine were 94 last CBC
ALL OF MY OTHER NUMBERS ARE IN RED !
BELOW MINIMUM RANGE ! Started OJJAARA 13 DAYS AGO! GOING FOR CBC ON OCT 14 ! PRAYING ALL MY LABS IMPROVE! I am ONLY
73 !! YEARS YOUNG ! HAD BONE MARROW MALIGNANCIES FOR ALMOST 20 YEARS! IT GOT WORSE IN THE LAST YEAR! I SUSPECTED MYELOFIBROSIS FOR ABOUT EIGHT MONTHS
GOOD LUCK 🍀