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Anyone want to talk about Myelofibrosis?

Blood Cancers & Disorders | Last Active: Jul 19 1:40pm | Replies (169)

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Profile picture for ideachaser1 @ideachaser1

There is a lot of information but the final comment was:
The patient’s positive CALR mutation analysis is noted.
Overall the current findings are consistent with involvement by myeloproliferative neoplasm with morphological features favoring primary Myelofibrosis.
I hope this answers your question.

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Replies to "There is a lot of information but the final comment was: The patient’s positive CALR mutation..."

Hi ideachaser1,
Thanks for sharing. I guess what I am asking is do you have megakaryocyte changes and any fibrosis? My BMB says says “consistent with primary myelofibrosis” so my diagnosis got changed to that. My O/H first said I had ET and I asked how she knew that. She said “there is really nothing else it can be” which was obviously wrong with this diagnosis now. How does one get a myeloid proliferative neoplasms specialist as I do not think I currently have one?
Did or do you have any symptoms? Did you ever have prior diagnosis like ET or PV? Are you similarly aged as I recently turned 65? You are the first person I have encountered with CALR mutation and diagnosis of myelofibrosis, so thank you for sharing.