Anyone living with Essential Thrombocythemia with JAK2?

Posted by lindamarie63 @lindamarie63, Dec 3, 2024

Has anyone been living with,ET, jac2 mutation

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

suedeani | @suedeani | 20 hours ago

I have the same thing and have been on Besremi injections every other week for the last year. As my blood improved we have been able to taper down the dose and I’m now down to 100mgms. At this low dose I hardly have any side effects. Hope it works well for you.

hanya | @hanya | 14 hours ago

In reply to @sckf "@alikay Thank you for your reply. I have been off the HU for about 6 weeks..." + (show)

@sckf
Hello ! Speak WITH YOUR DOCTORS ABOUT A DRUG CALLED JAKAFI !
“JAKAFI “ I took for two years ! I liked . I had PV
THEN MF !

jacklyn | @jacklyn | 6 hours ago

In reply to @hanya "@sckf Hello ! Speak WITH YOUR DOCTORS ABOUT A DRUG CALLED JAKAFI ! “JAKAFI “ I..." + (show)

@hanya
I have been put on jakafi for 18 days for AML with mylofibrosis in my bone marrow and enlarged spleen. I have low red cells 8.5 and platelets now at 9. I am afraid the jacksfi Will not work and lower my count even lower. White cells seem to be ok. I have to do transfusions blood and platelets every week. I hope that ends soon.

Please sign in or register to post a reply.