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JAK2 Mutation - Effects and Questions
Blood Cancers & Disorders | Last Active: Jun 19 5:59am | Replies (303)Comment receiving replies
My husband was diagnosed at 69, a year ago, with Primary Myelofibrosis including Jak2 mutation. A bone marrow biopsy and DNA testing confirmed this. We tried hydroxyurea but that did not shrink his spleen (as the spleen takes over the production of RBC since the bone marrow is unable to do this efficiently). Currently on Jakafi for the last 4 months, minimal side effects. We are facing a bone marrow transplant in the near future. If the spleen has not reduced in size, it will be removed and then we will proceed with the bone marrow transplant. A scary ride for sure, but it's the only cure.
Replies to "My husband was diagnosed at 69, a year ago, with Primary Myelofibrosis including Jak2 mutation. A..."
Good morning, @lag630 I know from experience this is an unsettled time for you and your husband. Not the way you’d expected to be enjoying retirement, right? My husband and I went through the same scenario. Life was going along just fine and then, out of the blue, I developed AML (acute myeloid leukemia) 3 years ago. As my only option for a future I required an allogenic (unrelated donor) bone marrow transplant which has, indeed, been a life saver! I see your husband will also require a new immune system to put things right. I will admit it’s no walk on the beach but it is doable and one heck of an experience! And a means to giving your husband a second chance at life. ☺️
It is a complex undertaking so it’s best to have this procedure and follow ups done at a hospital/clinic which specializes in bone marrow transplants.
Are you living near a large hospital that specializes in this procedure?
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Sad and scary, but it is what it is. Good luck with these procedures. A rough road, but the path you are facing. Growing old is certainly not for the faint of heart!