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Platelets at 87,000. Enlarged spleen. I am wondering if anyone out there has Myelofibrosis and what treatment they are currently undergoing?

October 24, 2022 (edited)
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Answer Summary

Members with myelofibrosis shared widely varying treatment experiences, from watchful waiting with stable blood counts to active medication,... Read more

Members with myelofibrosis shared widely varying treatment experiences, from watchful waiting with stable blood counts to active medication, with several on Jakafi at different doses and one member reporting remarkable improvement on Pacritinib, including normalized blood counts and significant spleen reduction. Many members described similar challenges including low platelet counts, enlarged spleens causing discomfort and weight loss, and the uncertainty of living with a progressive condition while balancing when to start treatment. A recurring theme was the importance of finding experienced specialists at major centers, actively asking doctors about newer options like Pacritinib, and recognizing that treatment decisions depend heavily on individual risk scores and symptom severity.

A myMPNteam Member

Read the Interferon research done at Weill Cornell and you‘ll switch to Interferon and will see amazing results.

May 20, 2023
A myMPNteam Member

I take Pacritinib for my Myleofibrosis since February 2022 My bloodwork is so good and I haven’t felt so good in years!

November 4, 2022
A myMPNteam Member

I am early stage (2yrs.). No symptoms yet and no meds. Only had several phlebotomy. My numbers are getting in control very soon. Good luck!!

June 10, 2023
A myMPNteam Member

I asked my dr at mdanderson about -pracritnib last time I was there and he wouldn’t recommend it for me. My platelets were really low going as low as 14 but for me he didn’t think it would benefit me. Wish I could try it cause sounds like it’s working great for others. He did lower my Jakafi dose which has kept my platelets around 24-30 and hgb around 10 whites are staying up though and still have procrit shot every week. Only one transfusion though in 17 wks so that a huge change. Usually every 6 to 8 weeks. Still do infusion of Vidaza every 8 wks.

April 21, 2023
A myMPNteam Member

My white, red, and hematocrit were all really high when I started Pacritinib. Now all normal.

November 18, 2022

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