How can chromosomal and mutation abnormalities i... - MPN Voice

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How can chromosomal and mutation abnormalities in chronic MPN inform clinical decision making?

hunter5582 profile image
13 Replies

Another interesting post from MPN Hub. Discussion of the three driver mutations and the importance of using the more sensitive tests to diagnose patients with low allele burden. Also discussion regarding prognosis.

youtube.com/watch?v=jb9dJIL...

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hunter5582
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13 Replies
DiveGoddess profile image
DiveGoddess

thank you for the post 🙂

EPguy profile image
EPguy

A broad message is increasing use of mutations for evaluating MPN. Specifically a new scoring system for MF to guide prognosis of SCT. (transplant)

He mentions that some triple negatives may not have MPN, but rather other blood conditions.

hunter5582 profile image
hunter5582 in reply toEPguy

With all of the details that we would like to hear, this presentation could go two hours or more.

Shadowperson profile image
Shadowperson in reply toEPguy

Is PV a sub category of MPN?

EPguy profile image
EPguy in reply toShadowperson

It is. MPN includes ET, PV and MF as well as the rare AML. There can be overlap in some of the these diagnoses as discussed in various posts.

Shadowperson profile image
Shadowperson in reply toEPguy

In reply to EP---many thanks. If I understand it correctly, PV/MPN is now compensable by theDept of Veterans Affairs under the PACT Act.

EPguy profile image
EPguy in reply toShadowperson

This site lists some relevant info for the PACT Act. I don't see blood cancers there. But it might be via another category.

va.gov/resources/presumptiv...

If PV has been added, it would be for two reasons:

-MPNs are considered Cancers as of ~2008, rather than blood disorders. Cancer get extra attention.

-PV is increasingly found as associated with prior toxic exposures.

Shadowperson profile image
Shadowperson in reply toEPguy

Its my understanding that PV is a sub of MPN which is akin to "MGUP"??? It is now covered by the PACT Act. I am soon to be submitting a claim to the VA for compensation for PV as a result thereof.

EPguy profile image
EPguy in reply toShadowperson

Is it possible you're thinking MGUS?:

"VA Disability Benefits for Monoclonal Gammopathy of Undetermined Significance"

cck-law.com/blog/va-disabil...

If so this is not in the MPN category. But a lawyer of the sort in this link could provide guidance. I'm familiar with a related sort of lawyer, vaccine injury lawyers.

Shadowperson profile image
Shadowperson in reply toEPguy

and those several who responded. Thank you. Will let you know how I did with my VA app. Can take up to a year before they make a decision.

hunter5582 profile image
hunter5582 in reply toShadowperson

You are correct that PV is one of the three classic MPNs. There are others as well - CML, CNL, CEL, Mastocytosis. mympnteam.com/resources/typ...

I believe there has been some action on this issue. I do not know much about it but do know that MPN Advocacy & Education International has been involved in advocacy on this issue. Here is some information on that.

mpnadvocacy.com/veterans-an...

mpnadvocacy.com/blood-cance...

Ann Brazeau and the folks at MPN A&E can be quite helpful. You may want to reach out to them for the best information.

Gaithersburg profile image
Gaithersburg

Hello Hunter - that was very interesting - thanks for sharing this information.

Plate profile image
Plate

Thank you for sharing Hunter!

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