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DiscussionGetting nowhere with current Hematologist
Blood Cancers & Disorders | Last Active: 4 days ago | Replies (43)Comment receiving replies
Replies to "ET-CALRs have fewer clots but more likelihood of progressing to MF. I am in my 17th..."
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.