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Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia

Blood Cancers & Disorders | Last Active: Apr 10, 2023 | Replies (10)
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@mtnlife

Okay, so I have a diagnosis, but it really is not that clear. The pathology report from the BMB "favors essential thrombocythemia". However, some mild to moderate fibrosis was detected. My hematologist says that this is generally good news, but that bloodwork will be monitored closely going forward. At this point I am on "watch and wait". The risk of thrombosis is less with the CALR mutation than with others and I am already on Eliquis.
I find this diagnosis a bit unclear and somewhat unsettling. I would welcome input from others with similar experiences. I do realize that the MPNs are extremely rare and so there just may not be others on this site who can related.
Beth

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Replies to "Okay, so I have a diagnosis, but it really is not that clear. The pathology report..."
Colleen Young, Connect Director | @colleenyoung | Feb 7, 2023

Hi Beth,
I moved your message about the update on your diagnosis to your original discussion. I did this so you can stay connect with @chrismary1224 @flynnconn and @raremiracle2. I'm sure they'll appreciate the updated on the pathology "favoring" the diagnosis of essential thrombocythemia.

You might also appreciate joining these related discussions:
- Essential Thrombocythemia: Looking for information and support https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
- Essential thrombocythemia https://connect.mayoclinic.org/discussion/essential-thrombocythemia-26a26f/
- Myeloproliferative neoplasm Anyone else have a similar diagnoses? https://connect.mayoclinic.org/discussion/does-anyone-else-have-a-similar-diagnoses/

How are you doing?

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rayna3582 | @rayna3582 | Apr 9, 2023

Hi Beth,
My experience is very similar to yours. BMB in September 2020 favors ET with Jak2 V617f mutation but Moffitt oncologist and local oncologist tell me that it could be ET or pre fibrotic MF as my BMB also shows level 1 and 2 reticulin fibrosis. I go for bloodwork once a month and all seems to be ok for now. From what I understand from my docs, MPNs are progressive and difficult to differentiate. I have read many articles from reputable websites that say this could all be one disease in different stages. The bottom line is that no one really knows for sure.
I know it's difficult, but the best things you can do for yourself are stay positive, exercise daily and take care of yourself. Dwelling on it will not help. The exercise will, both physically and mentally! As my Moffitt doc said, "It doesn't matter what we call it. It is what it is." At the time, I thought that was really harsh and lacked compassion. I now realize that he had a point. I can spend my time taking care of myself, or I can sit around and worry about it. Don't get me wrong, I do worry about it, but I don't dwell on it and let it consume me.
I hope you (and I, as this is my first post) can find the support we need to stay positive and learn how to live with this uncertain diagnosis.
Rayna

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