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Myelofibrosis treatments

Posted by @bijou in Just Want to Talk, Jul 17, 2011

I have just been diagnosed with Primary Myelofibrosis with a Jak2 mutation. This determined from the many vials of blood, the bone marrow biopsy & aspiration, flowcytomitries etc. etc. etc. and I have an enlarged spleen, crazy blood counts & am pretty darn tired lots of the time (I thought the "tired" was just all the tennis mixed in with "stress"). All this information gathered in just three weeks, in June. The doctor says ... "Perhaps you might want to consider taking Hydroxyurea, don't worry your hair won't fall out." Yikes - Chemo!

Wow! What does that mean? Is this Cancer? Can I still move to Mexico? Do I have time to write the books I was going to finish writing? Can I still play on the tennis teams I have been playing on? Will I see my grandchildren (if there are any)? All these popped into my once. So many questions, how much time to answer them all?

I am seeing a bone marrow specialist, and would like to find someone ahead of me with this diagnosis and know what has been tried. I am curioous about the two INCYTE drugs the JAK2 inhibitors. Anyone experienced wirh that? Or ...anything else? I have just set up a website trying to create dialoge there specifically in this disease. Please respond here and then please cut and paste and respond there on a blog or under discussions - clinical trials. Thank you so much

Tags: myelofibrosis, Leukemia


Posted by @jfinlay, Dec 9, 2011

Hello Bijou.
I too was recently diagnosed with myelofibrosis, except mine is post essential thrombocytopenia. I was diagnosed July 28, 2011. My doctor started me on hydroxurea and on October 6 I had a splenectomy. I'm now off of the chemo.
My doctor here has scheduled me to meet with Dr. Tefferi at the Mayo Clinic in Rochester, Minnesota. I have all of the same questions and thoughts you expressed and would like to know so much about this leukemia and Jakafi. I'll keep in touch to share any and all info I find. I wish you well with your treatment and know you're I'm my prayers.


Posted by @bijou, Dec 9, 2011

I have information for you. If you will go to and fill out the contact me form it will send me confidential email. Please read a bit about standing in the light on my site and I want to share something remarkable with you!
If you want, send me your phone number, it is much easier to talk about and share infor rather than typing it. My prayers are with you also,

jfinlay likes this

Posted by @jfinlay, Dec 29, 2011

Hey Bjiou. Are you okay? Haven't heard from you in a while. Did you get my phone number in the email? Just wondering.

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