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Is a baseline bone marrow biopsy standard in the diagnosing of a MPN or for monitoring it?
Dear Cindy2,
A bone marrow biopsy is a standard for diagnosing essential thrombocythemia and primary myelofibrosis, and even for polycythemia vera
A responsible hematologist will never put a… read more
Thank you, Tatiana!
You are so knowledgeable. I asked my specialist at a recent appointment Whether my percent of mutated alleles that are JAK2 positive Have any correlation to the severity of my… read more
Progression to MF is more likely with PV than ET. Still, most people with PV will not progress to MF.
Note that you cannot have both PV and ET. You have either one or the other, or possibly… read more
So when you had your bone marrow biopsy did you read your report and if so did your diagnosis read like the part I circled red. The reason I ask is because one of my doctors said it’s a standard statement.
I don't have my full report, but it says "consistent with an MPN, most likely ET". "Normal to slightly hypercellullar BM, megakaryocytes with atypia, in clusters. Mild fibrosis MF1". At the time of my… read more
Been doing regular phlebotomies since then but due to very low iron just switched to Jakifi but is anything really necessary
I have MDS/MPN-RS-T. On the MPN Component, my MPN is behaving like PV. My Hematocrit number is running above 50. My Oncologist wants that number to be below 45 so he ordered weekly phlebotomy and… read more
I was diagnosed with MPN/ET after being initially diagnosed with Polycythemia Vera with a JAK2 Gene mutation in May 2022
This was left 'undiagnosed' for +/- 10 years
I have blood lab results dating back to January of 2013 when my Platelet counts were:
01/2013 - 701
04/2014 - 620
02/2015 - 588
03/2017 - 716
01/2018 - 725
02/2019 - 744
08/2020 - 796
05/2021 - 833
04/2022 - 783 (this is when it was finally brought into question by my VA doctor)
My questions are;
Does anyone know of any findings… read more
I was diagnosed as having either Essential Thrombocythemia or Myelofibrosis last August. To decide which it was, I had 2 Bone Marrow biopsies, both of which were not of sufficient standard to be used in a diagnosis. I was really upset about this considering that I found the procedure very painful. I had only injections to numb my skin and “”gas & air” during the procedure. Nevertheless, I would go through that again and told the consultant so. However he said treatment for both the MPNs was the… read more
Can ET increase risk of blood clots or bleeding because of poorly functioning platelets? Shouldn't ET be treated? As for painful marrow biopsy, was it done at a cancer site that specializes in MPN? A… read more
Currently I am being treated with low dose Aspirin. Other than that, there is no medication at all. If anyone has the same condition as me and is being treated, please give me more information. Thank you very much
Hello BichDiem
I'm glad you're here and getting good information from Steve and others on this site. I'm also glad to here that you have an appointment this month to learn more from an expert
To… read more
I have secondary Myelofibrosis. I take Jakafi 10 and Anagrelide.05
Twice a day. My numbers are good.
This definition is from the Cleveland Clinic:
There are two types of myelofibrosis:
Primary myelofibrosis is myelofibrosis that occurs on its own.
Secondary myelofibrosis arises secondary to other… read more
I have ET (CALR).
Dear Janet,
My dad, who was diagnosed with high-risk myelofibrosis after he passed away, had bone pains from ET since late adolescence. They were explained away as rheumatoid arthritis, he was… read more
