← Return to Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia

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Profile picture for jtcat7 @jtcat7

Diagnosed with prefibrotic myelofibrosis 7/25. 78 years old with JAK2, ASXL1, ZRSR2 & TET2 mutations. Platelets went to 1.355 million..now down to 527 with heavy Hydroxy. BMB confirmed by University of Virginia Cancer & Virginia Cancer Institute.
Trying to find my way through the available info.
Questions:
1. Can you measure the speed of progression by the speed the platelets initially increased?
2. How can you tell when moving from Pre to the next phase?

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Replies to "Diagnosed with prefibrotic myelofibrosis 7/25. 78 years old with JAK2, ASXL1, ZRSR2 & TET2 mutations. Platelets..."

Welcome to Connect, @jtcat7. Looks like you have a full deck of mutations in your hand. Over our lifetime, we can develop some genetic mutations. Some of these may lead to various blood disorders such as myeloproliferative neoplasms (MPNs) which can cause issues with our bone marrow and its ability to produce healthy blood products. Many people with MPNs have either Polycythemia Vera (too many red blood cells) or Essential thrombocythemia (too many platelets). Both of these conditions may rarely progress to MF. MF (myelofibrosis) the normally spongy bone marrow can become filled with scar tissue or fibrotic tissue and interfere with blood cell production.

You’ve asked a couple of questions regarding the speed of progression and how you can feel if you’re moving from pre to the next phase. Those are great questions for your hematologist.

I did find a good series with videos from Patient Power with information about MPNs and prefibrotic primary myelofibrosis which might help in answering your questions.
https://www.patientpower.info/video/myeloproliferative-neoplasms/treatments/what-is-prefibrotic-primary-myelofibrosis
Was your high platelet level discovered during a routine exam or were you having any symptoms that to the discovery? How are you feeling with the HU? Any side effects?