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Myelofibrosis w/ JAK2 mutation

Posted by @bijou in Just Want to Talk, 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.

Tags: myelofibrosis, leukemias

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Posted by @bijou, Jul 13, 2011

You can also reply to above at

thank you.

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Posted by @bijou, Jul 14, 2011

I have heard there are clinical trials at the Mayo clinic for the JAK2 inhibitor drugs. Does anyone know about that?

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Posted by @suthrnkisses, Jul 17, 2011

I have mds... leukocytosis and have been taking ydroxyurea since sept.of 2003 to keep my white count under control so i don't get full blown leukemia.I started out on 2 grams a day and now have worked my way down to 1000 mgs a day. it seems to be working well for me so far. God bless you and i hope whatever treatment you receive works for you.

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Posted by @bijou, Jul 17, 2011

Thank you I am looking into many things at the moment, perhaps a clinical trial for one of INCYTE's new JAK2 inhibitorss. I am so glad your treatment is working for you.
Could you please do me a favor as I am trying to get my site interactive with responses like yours, as they re valuable to me and to others. Would you mind cutting and pasting your response onto I would be so appreciative. I wish you well. Again, thank you, we are considering hydroxyurea for the high white count and enlarged spleen.


Posted by @jfinlay, Dec 17, 2011

Was informed today from Incyte that Jakafi is for all myelofibrosis patients, with and without JAK2 mutation.


Posted by @djr, Jan 4, 2013

I have been diagnosed with myelo- fibrosis about seven years ago. Before that it was a myelo prolific disorder. High white count which I still have. Hydroxyurea was prescribed to control the severe itching after a shower. I have participated in clinical trials at U OF MICH including the drug I am now using. JAKFI can reduce the size of your spleen along with other benifits. Myelo-Fibrosis is not curable. The trick is to slow it's progression. I strongly urge you to talk to your doctor. You can live a long time with this disorder with proper care and treatment. Call or e-mail the Incyte Corporation for explanatory manuals.

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