1. < Blood Cancers & Disorders

Myelofibrosis w/ JAK2 mutation

Posted by Bijou @bijou, Jul 13, 2011

I have recently been diagnosed and want to know people's experiences. Has anyone been through a clinical trial? Taken hydroxyurea? Not done anything? Worked with vitamins, minerals and alternative healing modalities? My white count is over 30,000, and spleen enlarged. Was just diagnosed 4 weeks ago.
Please share.

Thank you.

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khandro100 | @khandro100 | Jul 4 10:02am
In reply to @rabab101 "Hello and I am new to this. My brother just got his JAK2 V617F back and..." + (show)
@rabab101

Hello and I am new to this. My brother just got his JAK2 V617F back and it said NOT DETECTED. What does that mean? They took a bone marrow biopsy and are testing him for Myelofibrosis.

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I too have Myelofibrosis I did a bone marrow biopsy prior to starting Jakafi. They did detect a genetic change that was causing they said this bone marrow issue. I wonder how things went since May 2023 over a year ago. So I have had this diagnosis for over a year.

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khandro100 | @khandro100 | Jul 4 10:05am

hello Bijou
I did start Jakafi a year ago. I did not take the full dose. I have not noticed much change in my condition It has stabilized so I am told . I still have symptoms though and some side effects I am planning to talk with a Chinese medicine specialist. I was told by one I have worked with before that it is possible that Chinese herbs could help with side effects Fran

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