Myelofibrosis - Mayo Clinic

Leukemia is a type of cancer that comes in many forms. Here's one woman's story of her journey with a type of leukemia called myelofibrosis.

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Science & Technology

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• Mayo Clinic
• Medical Edge
• Myelofibrosis
• Leukemia

[74westy]

After watching this video I get the impression that your patient is on one of the trial JAK inhibitor drugs. This is not true, she has been on Interferon and now Pegasys. It's an older drug that has helped her. You may want to update this video with some clarifications. Great news for all of us that have MPD's that there is research and new drugs on the way, but I'm not sure this video is honest about how Patricia achieved her success.

[mayoclinic]

@74westy Thank you for your comment regarding Dr. Mesa's discussion of myelofibrosis. We will be forwarding your thoughts to him for clarification.

[74westy]

I wanted to update my comments on Pegasys. I was on this drug for 4 months, but my spleen continued to grow. I joined a trial at MD Anderson for sustained release Ruxolitinib. It has controlled my symptoms and reduced my spleen. Now that the regular Ruxolitinib has been approved by the FDA (now called Jakafi) I hope to continue this therapy along with Pegasys.

batestiaful , I hope you have sought out one of the experts for a second opinion.

[74westy]

batestiaful, There are various trials each with it's own criteria. You may not want to consider a trial drug unless you have moderate symptoms and the trial is a phase III. I am not a Dr., but I also have PMF diagnosed 1/11. I am on 45mcg Pegasys for a bit over 2 months now. PMF is a very serious disease and treatment with Pegasys has been shown to be effective if started early. I suggest you see one of the experts such as Dr. Mesa, or Dr. Silver in New York.

[batestiaful]

I was just diagnosed with Primary Myelofibrosis-I was told that I would have to wait until the disease got worse (counts higher) before I I would be a candidate for a trial study is this so? I just turned 29, do others have this within my age group?

[ramesa3]

This patient (who has given me permission to clarify) has benefitted from both regular interferon alpha and now pegylated interferon alpha 2a (pegasys). Pegasys (can decrease JAK2 allele burden), like specific inhibitors of JAK2, are new being explored for therapy of myelofibrosis. My apologies if it seem as if she is being treated with a JAK2 inhibitor (which she has not yet tried). This video was general, I refer you to our other MF videos for more details on the therapies. -R. A. Mesa, MD