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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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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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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@suthrnkisses

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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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 http://www.healingcreatively.com I would be so appreciative. I wish you well. Again, thank you, we are considering hydroxyurea for the high white count and enlarged spleen.

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

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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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Took Hydroxyurea for years to control platelet count. But ,is there a relationship between that drug and Myelofibrosis ???

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Hi my brother just diagnososed with myelofibrosis with CALR mutation. If any one of you have any information about this condition, please help us.

Short history: 6 years ago he was diagnosed with ET and has been taking hydroxyurea since then. Now, he is experiencing symptoms of Myelofibrosis. The doctor did a bone biopsy and has officially diagnosed him with Myelofibrosis with CALR mutation. We would like to know if there is a specific drug that will work on him. Any information will be helpful and greatly appreciated!

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@susanvij

Hi my brother just diagnososed with myelofibrosis with CALR mutation. If any one of you have any information about this condition, please help us.

Short history: 6 years ago he was diagnosed with ET and has been taking hydroxyurea since then. Now, he is experiencing symptoms of Myelofibrosis. The doctor did a bone biopsy and has officially diagnosed him with Myelofibrosis with CALR mutation. We would like to know if there is a specific drug that will work on him. Any information will be helpful and greatly appreciated!

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Hi, I,too, took Hydroxyurea for years to combat high platelet count. About three years I was diagnosed with Myelofibrosis. Am now ,and for the past two years have been taking Jakafi 15 mg.tabs twice a day. I see a Hematologist every month for blood check ups. Keep in touch with group. Strength in numbers .

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@susanvij

Hi my brother just diagnososed with myelofibrosis with CALR mutation. If any one of you have any information about this condition, please help us.

Short history: 6 years ago he was diagnosed with ET and has been taking hydroxyurea since then. Now, he is experiencing symptoms of Myelofibrosis. The doctor did a bone biopsy and has officially diagnosed him with Myelofibrosis with CALR mutation. We would like to know if there is a specific drug that will work on him. Any information will be helpful and greatly appreciated!

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Thanks for the response. I'm happy to hear the medication is working for you. I, too, hope they find a drug that will work for him as well.

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