Has anyone experienced immediate spleen shrinkage with Jakafi for MF?
Community Member
a month agoI was diagnosed in 2013 with PV but not told it was cancer… just instructed to donate blood 3-4x/yr. My spleen started enlarging and then symptoms came recently! Spleen 22cm, itching (w/any temp change from cool to hot), fatigue, headaches, dizziness, bruising, and bone pain. Now my dx is Post PV MF, JAK2, Trisomy 8, del20Q, allele burden 88%, MF 2/3, anemic and platelets dropping - started Jakafi 15 mg 2x/day, 2 weeks ago and spleen shrinking already by quite a bit! Has anyone else had the experience of an immediate spleen response to Jakafi? My MPN specialist says I could go years on Jakafi and no sct will be necessary but it seems like many have a more varied experience and I am 65 so feel a sense of urgency to find a clear path. My heme/onc doc gave me an immediate referral to transplant doc and that doc says his guess is that I’m headed toward sct about 6 -12mo. The MPN specialist disagrees and was painting a picture of butterflies and roses. I am so confused and wish I had a definite path… but this disease is just not that cooperative, it seems! Any insights anyone can share?
Community Member
a month agoIt's encouraging to hear about the positive response to treatment so far. Early spleen reduction with Jakafi does happen for some patients with myelofibrosis, though experiences can vary widely from person to person. The conflicting opinions from different specialists can feel overwhelming, especially when trying to plan ahead. Many community members have found it helpful to get a second opinion or even seek consultation at a specialized MPN center when facing these kinds of treatment decisions. Consider connecting with others here who have navigated similar treatment paths - their experiences and insights could provide valuable perspective during this uncertain time.
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