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.
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.
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.
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 ??