Home         Forums  

Go Back   Marrowforums > Community > Tell Your Story
Register FAQ Search Today's Posts Mark Forums Read

Tell Your Story Say hello or share your experiences

Reply
 
Thread Tools Search this Thread
  #1  
Old Thu May 12, 2016, 02:19 PM
dsellers55@gmail.com dsellers55@gmail.com is offline
Member
 
Join Date: May 2016
Location: Fayetteville, North Carolina
Posts: 4
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!
Reply With Quote
  #2  
Old Thu May 12, 2016, 03:30 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
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?
Reply With Quote
  #3  
Old Thu May 12, 2016, 04:25 PM
dsellers55@gmail.com dsellers55@gmail.com is offline
Member
 
Join Date: May 2016
Location: Fayetteville, North Carolina
Posts: 4
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!
Reply With Quote
  #4  
Old Thu May 12, 2016, 04:26 PM
dsellers55@gmail.com dsellers55@gmail.com is offline
Member
 
Join Date: May 2016
Location: Fayetteville, North Carolina
Posts: 4
David Sellers

By the way my spleen was very large and is beginning to shrink some, must be a slow process.
Reply With Quote
  #5  
Old Sun Aug 13, 2017, 09:20 PM
Aliciamock Aliciamock is offline
Member
 
Join Date: Aug 2017
Posts: 2
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.
Reply With Quote
  #6  
Old Mon Aug 21, 2017, 06:57 PM
Warburg Warburg is offline
Member
 
Join Date: Jun 2017
Location: Miami Beach
Posts: 7
So how is it going David? You haven't posted in quite some time.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Dr. David Margolis Invites You to the Miami Patient and Family Conference Marrowforums News and Events 0 Fri Oct 17, 2014 12:31 AM
My sweet David rose mcmillin MDS 11 Tue Mar 20, 2012 08:32 PM


All times are GMT -4. The time now is 11:43 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org