International MPN News, Science & Opinion





On Jakafi mutations …A confession.

The MPNforum Special Report raising questions about Jakafi and the emergence of deadly mutations created concern, awareness, panic.  It wasn’t supposed to be like that. It was a factually true Report, fully vetted by the experts.  But it wasn’t even mostly about mutations.

Here’s the confession:

And an apology.


Special Report:

Jakafi and the evolution of deadly mutation



There is a smoking gun, but no fingerprints. Clonal evolution means emergence of new mutations.  In Jakafi therapy.the numbers are chilling.

This is the story of the hidden menace behind the life saving face of Jakafi..a true Janus mask.



To finish the work



Without him.


The true leader of our MPN world has gone.

Camera shy, avoiding personal publicity, his relentless pursuit of a cure for MPNs is largely unrecognized.

And yet he has been the driving force behind virtually every therapeutic and scientific advance we’ve enjoyed for the past decade.

Before leaving, he opened new research lines that are only now being explored. And he left us the infrastructure that can take us all the way to a cure.

What remains is for us to roll up our sleeves and help finish the work he began. He has shown us how. (Story here).




Ellen’s back and she brought us a fresh update (December 26, 2017) of the List.

Now 273 Patient-recommended hematologists from 23 nations and 41 states.

You can find it here.

And best wishes from all of us at MPNforum for a Happy, peaceful and creative New Year.







We’re going to get a new MF/PV drug

Yes, it’s true!   Federatinib is back…and in the hands of its original creator. Forget the Sanofi nightmare. The FDA has lifted its clinical hold and Impact Biomedicines (Drs John Hood, Catriona Jamieson & Co.) is using Sanofi’s Phase III dataset and moving full speed to get this Jakafi competitor in our hands.  And a strange twist to the story. Independent panel determines there never was any reason to abort the trial. Sanofi closed up shop before taking a closer look.

Plus News from ASH…an overview of the MPN scene by the Dean of Hematologists… The latest MPN Hero… A Scottsdale type meeting in San Antonio … Exploring the way interferon really works…plus the new List of Hematologists…and more.  Enjoy

It’s all right here

Happy Holidays from all of us at MPNforum


*This is an ADVANCE copy of the issue that will be published Thursday.  Please send any corrections, typos, comments to Thanks.



The Zhenya Senyak Comeback Road Show…

by Zhen

The Zhenya Senyak Comeback Road Show…

To celebrate my shaky return to an active life, I thought I’d share some thoughts on the dangers of second cancers for MPN patients….A graphic illustration of Kafka and Cachexia… My take on the needs and strengths of our MPN patient community in the US… and a quick news report on the surprising dangers associated with checkpoint inhibitor therapy.

“It ain’t easy… but it can be done. Maybe..”

Ciao bello..


Here’s a chance to revisit this major MPN event. It’s…

The Cotter Field Report

…a closeup look at the people and events by MPN patient Mary Cotter.

This year’s CR&T started in tragedy and ended in hope. Along the way Mary covers the program and wonders what it is that makes these meeting so essential to our community.  It’s all

















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