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Posts (6)

Dec 9, 2011 · Myelofibrosis treatments in Just Want to Talk

I have information for you. If you will go to http://www.healingcreatively.com 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,
Bijou

Jul 17, 2011 · Myelofibrosis treatments in Just Want to Talk

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 head…at 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 http://www.healingcreatively.com on a blog or under discussions – clinical trials. Thank you so much

Jul 17, 2011 · Myelofibrosis w/ JAK2 mutation in Blood Cancers & Disorders

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.

Jul 14, 2011 · Myelofibrosis w/ JAK2 mutation in Blood Cancers & Disorders

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

Jul 13, 2011 · Myelofibrosis w/ JAK2 mutation in Blood Cancers & Disorders

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.