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  #1  
Old Thu May 12, 2016, 02:19 PM
dsellers55@gmail.com dsellers55@gmail.com is offline
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Location: Fayetteville, North Carolina
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David Sellers

Hello everyone. I was diagnosed a couple months ago with Meylofibrosis. I am 60 and I understand this is a prime age to be diagnosed. I was diagnosed with polycythemia vera about 4 years ago. It was suggested to me by a member that I join this forum. I am currently taking Jakafi 20mg. and my blood work is improving and my spleen is starting to reduce in size so I am hopeful. I know there is no cure but hope to tolerate this for a very long time with God's help!
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  #2  
Old Thu May 12, 2016, 03:30 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by dsellers55@gmail.com View Post
Hello everyone. I was diagnosed a couple months ago with Meylofibrosis. I am 60 and I understand this is a prime age to be diagnosed. I was diagnosed with polycythemia vera about 4 years ago. It was suggested to me by a member that I join this forum. I am currently taking Jakafi 20mg. and my blood work is improving and my spleen is starting to reduce in size so I am hopeful. I know there is no cure but hope to tolerate this for a very long time with God's help!
Hi David.

Your spleen must have been enlarged, so this is a good sign that you're getting the right treatment.

Did you just start Jakafi to treat the myelofibrosis, or were you already taking it, or taking hydroxyurea (e.g., Hydrea) for the polycythemia vera?
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Old Thu May 12, 2016, 04:25 PM
dsellers55@gmail.com dsellers55@gmail.com is offline
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David Sellers

My doctor started me on hydroxyurea while I was getting Jakafi cleared through my insurance. I've been on Jakafi for a little over two months now!
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Old Thu May 12, 2016, 04:26 PM
dsellers55@gmail.com dsellers55@gmail.com is offline
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David Sellers

By the way my spleen was very large and is beginning to shrink some, must be a slow process.
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  #5  
Old Sun Aug 13, 2017, 09:20 PM
Aliciamock Aliciamock is offline
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My husband had myelofibrosis

Hi David! I wanted to see how your Mylelofibrosis diagnosis was going? I saw your thread here that you were on Jakofi about a year ago. My husband began jakofi in April of 2015. His spleen had enlarged about 10 times its size. He had myelofibrosis and that turned into acute leukemia.
In June of 2015 he had a bone marrow transplant and his sister was the donor. It took two tries for the stem cells to take. He now is enduring symptoms of chronic graft vs host disease (burning skin, depleted muscles, dry eyes and lung issues). It's not a walk in the park but I'm thankful he is still alive after two plus years.
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  #6  
Old Mon Aug 21, 2017, 06:57 PM
Warburg Warburg is offline
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So how is it going David? You haven't posted in quite some time.
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