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