Just Diagnosed with MPN - So I have a few ?’s

[hsdale3]

I keep reading the different forms of MPN’s are progressive.

1) If so, what is the order? (From earliest/least severe, to most advanced/severe)

2) Is there a “single test” to confirm JAK2?

3) Is there a single test to pin down which specific form I have (or combination of tests to pin it down)?

3 The articles and information I am finding tend to be 5 to 10 years old, or older - is there a good source for newer (the latest🤞🏼😁) information out there?

Thanks for any answers, or info provided!

[hunter5582]

1) This is a very fuzzy way to answer your question. Of the three primary Philadelphia Negative MPNs starting from least to most severe would be ET - PV - Prefibrotic MF & MF. The more accurate answer to your question is more complex and has to do with patterns of symptoms, history of thrombosis or hemorrhage, and more. Each person's MPN profile is different.

2) There are multiple types of JAK2 tests. Broadly speaking, there are Qualitative (yes/no) and Quantitative (% mutated HSCs). There are different technologies used, including PCR, NGS, Sanger Sequencing, FISH, and more. Your MPN care team will review this with you.

3) The differentiation can sometimes be made between ET and PV with blood tests only. bone marrow morphology is part of the diagnostic criteria and is often needed to clarify the diagnosis.

4) There is a lot of information that is more up-to-date. Here are a few of the links.

mpnvoice.org.uk/

patientpower.info/myeloprol...

mpnadvocacy.com/

mpninfo.org/

This set of webinars is a very good place for up-to-date information. Start with MPN Molecular Biology. mpninfo.org/conferences/202...

There is a lot more out there of interest. One of the most important things at this point to to consult with a MPN Specialist. Here are two lists.

mpnforum.com/list-hem./

mpninfo.org/medical-informa...

All the best as you enter this journey.

[hsdale3 in reply to hunter5582]

Hunter, thank you!

[Mirror368]

A lab report diagnosed JAK2 mutation and a bone marrow biopsy diagnosed that I have Essential Thrombocytosis (ET).