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Getting nowhere with current Hematologist

Blood Cancers & Disorders | Last Active: Jun 18 4:34pm | Replies (57)

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Hi nohrt4me,

Thank you for posting. I totally agree with you that we have to work at not dwelling on the worst case scenarios, and I suspect those with any MPN need to do that too. The added frustration for me is that they do not know all that much about CALR mutation as it was discovered fairly recently, probably after you were first diagnosed with ET! I keep finding scientific articles reporting what seems to me to be saying that they do not have a treatment with medication to induce remissions per Dr. Mascarenhas for Myelofibrosis. Also, CALR is treated like JAK2 still as they only have meds for JAK2 with enough data showing positive reduction of symptoms. Bone Marrow Transplant is the only option for cure for myelofibrosis apparently at this time. I even found a recent article in Cancers April 2025 stating in the first study of its kind that very high platelets was shown to be protective to overall survival in overt myelofibrosis! I also found there is something like a 20% misdiagnosis between ET and Myelofibrosis! So, for me it is best to stay positive, stay very active, eat healthy foods, have healthy habits, be thankful for all my blessings, and think about what is best for me.

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Replies to "Hi nohrt4me, Thank you for posting. I totally agree with you that we have to work..."

They have differentiated treatment for CALR's slightly, and I'm hoping that all of us who were diagnosed with CALR right out of the gate will be studied and help refine treatment further. My clinic used to send my records to Mayo for study. However, last year it became part of the University of Michigan health system, which has caused major disruptions.

Docs also tend to let platelets run a bit higher in CALRs before starting HU, depending on age. CALR puts you in a low to moderate. If a hemo understands the difference between CALR and JAK2 patients, it's one way to tell if he's well-informed about MPNs.