Jakofi or BMT for Myelofibrosis

Posted by davi0937 @davi0937, May 22 7:38pm

Evening to fellow Mayo Connect

My visit with my provider showed continued increase in spleen size. I’m in a clinical trial that has resolved my low hemoglobin and my platelets and wbc are normal. I’m 66 - will be 67 in the fall. The suggested treatment for spleen is to add jakofi to decrease spleen. I am in very good health otherwise- no other comorbidities. The side effects of jakofi are worrisome and I’d prefer to do the BMT before I’m 70. Please give me your thoughts and experiences with jakofi. Thank you

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Lori, Volunteer Mentor | @loribmt | May 30 10:06am

In reply to @karla987 "I started Jakafi a week ago. Thought it was going well but was up all night..." + (show)

Hi @karla987 I hope you’re feeling better today. Has the nausea passed?

karla987 | @karla987 | May 30 10:40am

In reply to @loribmt "Hi @karla987 I hope you’re feeling better today. Has the nausea passed?" + (show)

@loribmt
Yes, I am feeling much better other than fatigue. Thank you for asking. I feel like I aged 100 years over night. One day I get up and go to work and the next day I have all the perscriptions to manage, side affects, several doctor visits every week. What happened?

davi0937 | @davi0937 | May 31 2:23pm

https://thebloodline.org/218e217/

Lori, Volunteer Mentor | @loribmt | Jun 1 9:41am

In reply to @davi0937 "https://thebloodline.org/218e217/" + (show)

@davi0937 This is a great podcast and source of info for Myelofibrosis. Thank you for posting!

1pearl | @1pearl | Jun 2 2:27pm

In reply to @davi0937 "https://thebloodline.org/218e217/" + (show)

Hi @davi0937,

That was a very informative podcast. Thank you for sharing it.

davi0937 | @davi0937 | Jun 8 2:16pm

Another interesting podcast https://www.youtube.com/watch

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