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Myelofibrosis*

Blood Cancers & Disorders | Last Active: Feb 24 2:21pm | Replies (122)

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@sharonm2024

Hi ideachaser1, I was diagnosed with Primary MF/CALR July 2023. Although I didn't know about the CALR mutation until a year later. In September 2023 I applied for a clinical trial at Mayo. Its suppose to help my anemia--when I started the trial my hemoglobin was a 7, my hemoglobin fluctuates, but it has never been lower then 8.5. In January of this year I was a 10--that's the highest. So I believe it is working. Also I'm on Jakifi 10mg 2x's a day, which lowers my hemoglobin. Anyway, I looked at the website and contacted the lead research doctor and after some testing became part of the trail. So sometimes you have to advocate for yourself as my main home clinic doctor was not an advocate and is a kind of a wait and see type doctor. Hopefully your doc's will be different.

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Replies to "Hi ideachaser1, I was diagnosed with Primary MF/CALR July 2023. Although I didn't know about the..."

Sharon thank you for your response. It does sound like you are doing well. Are you by chance in the JNJ trial or the Incyte trial targeting the CALR mutation?
The Incyte trial is not yet recruiting where I am and is the only one near me but I’m working at getting on the list in multiple ways. Cross your fingers for me. Both of these trials seem to be showing promise.