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Mylinfibrosis

Hi, I'm Richard F.

MylinFibrosis – lukemia – I’m looking for someone else who my be suffering with the rare form of lukemia, I was recently diagnosis with this ailment and started taking Jakafi. Any inform on what I can expect would be appreciated.

  • Post #1
  • Mon Sep 24, 2018
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I'm ., and I'm a survivor of Other Cancer
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My brother was just recently diagnosed with myelofibrosis. They suggested Jakafi when the time was right (his blood levels aren’t to that point yet). Eventually, they say a bone-marrow transplant will be necessary. Seeking a second opinion for him at my suggestion just to confirm that this is the right way to go. Unfortunately, we don’t have any other information to share.

  • Post #2
  • Tue Sep 25, 2018
Hi, I'm Lorraine

I have been living with primary myelofibrosis for 13 years. To date I do not need medication although I do occasionally treat symptoms such as bone pain. It is imperative that someone with this disease see an MPN (myeloproliferative neoplasm) expert. Regular hematologist/oncologist usually do not know enough about this rare disease. Being treated incorrectly may lead to death. Some with this disease progress quickly and in some the course slower but whichever please see a specialist. An excellent place for support is a Facebook group called Myelofibrosis Private Support Group. The administrators are a Dave Denny and Diane Blackstock. Please don’t wait to see an MPN expert, your life may depend on it.

  • Post #3
  • Sat Sep 29, 2018
Hi, I'm MARK D W.

I have myelofibroises. I am on jakafi to help shrink my enlarged spleen. I have been on jakifi since July 2018. My hemitoligist said I will need to be on it for a while. Anyone with this issue please respond and let me know how you are doing.

  • Post #4
  • Thu Dec 13, 2018
Hi, I'm Terry B.

I do not have myelofibrosis, or at least I haven’t been told if I do, but I have been diagnosed with PV in 2010. I have the enlarged spleen, and suffer from shortness of breath because of it. I have been taking Jakafi for 18 months. My blood counts are good now but The spleen doesn’t seem to be shrinking.

  • Post #5
  • Sat Dec 15, 2018
Hi, I'm Richard F.

I also have Myelofibrosis and enlarged spleen, I have been taking Jakafi since 9-1-2018, my spleen is still very large, from what I read the Jakafi is not curative just helps with the symptoms. I’m 75 years old and was told a marrow transplant is not an option for me at my age. I’m told I have maybe a year to live. I would like to know if I have any options ??

  • Post #6
  • Tue Dec 18, 2018

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