Science & Medicine

December, 2017 …The ASH issue


On Jakafi, SCT and mutations…a Confession

Special Report: Jakafi and the evolution of deadly mutation 



Deep South in Deep Freeze
ASH Atlanta buried in snow and ice.

Photo: Marina Sampanes Peed

Rising from the Ashes…  fedratinib is back!

Four years after blowing up at ASH, Sanofi’s alternative to Jakafi roars back to life at ASH.  Fedratinib back in the hands of its co-creator is ready to roll. New evidence shows clinical trial aborted in 2013 based on diagnostic error…FDA lifts clinical hold.

Dr. John Hood

Dr. Catriona Jamieson


Hood and Jamieson.  Fedratinib is in their hands now.

 (Here’s the full story)


Dr. Richard T. Silver… The Long MPN View.

As a young physician, he was already a formidable enough hematologost that Dr. William Dameshek — the physician/scientist to first identify the myeloproliferative disorders as a family of genetic diseases– wrote the preface to his book, Morphology of the Blood and Marrow in Clinical Practice. “This book is the product of great experience in clinical investigation and in the practice of hematology,” wrote Dameshek.  Decades later, after caring for thousands of patients and publishing several hundred papers in scientific journals, Dr. Richard Silver is today the undisputed dean of American hematology. Here, at ASH,  he looks back and ahead at the state of MPN therapy in an interview that pulls few punches.  Interview by Marina Sampanes Peed.

A hero’s walk

The latest MPN Hero anointed at ASH has walked her way into history with her sister, husband, and hundreds of family and friends.  In the process she helped fund basic MPN research at two labs and ignited an international MPN fund-raising/awareness program.  Meet Julie Libon shown here at the ASH Cure Magazine event with MPN Research Foundation president, Barbara Van Husen. Her MPN Hero video is here..



The Charming Gardeners

Some of us just enjoy the flowers, others cultivate the garden.  For years contributors to the Small Donation program that fuels MPNforum remained invisible.  We all know our rock star docs and many of the writers, editors and photographers who contribute to the Forum…but the folks who pay the bills, keep the lights on and the equipment running were anonymous. Last year for the first time we brought them out into the sunshine.

Here are the MPNforum 2017 Charming Gardeners, the 89 men and women who stepped up to support the thousands of  MPNforum followers and truly keep our cooperative patient/caregiver  project going for the whole international community. Meet the Charming Gardeners Quietly, they keep our garden flourishing.

The Interferon Forum

Intense concentration as the MPN Research Foundation’s Interferon Form at Atlanta ASH gets underway.  At the meeting, Dr. Andy Schafer, Director of the Richard T. Silver Center for Myeloproliferative Neoplasms, pointed out we need to get the many MPNRF funded interferon projects to a place where true idea sharing and collaboration can take place. “In these projects, somewhere” said Schafer, “is the answer to the question of what makes Interferon effective.”  The MPNRF interferon initiative was formed to explore why targeting the IFN pathway reduces the burden of mutated stem cells in MPN patients…and to answer the question raised by Dr. Schafer.  For more information

New & Notable: If you like the bi-annual Scottsdale patient meetings you won’t have to wait until 2019 to get your MPN science and medicine fix. There’s a Patient/Caregiver Program scheduled for February in San Antonio.  Dr. Ruben Mesa has teamed up with MPN Meeting Maven Ann Brazeau (MPN Advocacy and Education) to run a Patient/Caregiver Program a with a few of his close friends – Dr. Srdan Verstovsek,  Dr. Jason Gotlib,  Dr. John Mascarenhas, and many others. Date: February 24, 2018.  The Texas meeting is seen as an expansion of the Scottsdale project initiated by Dr. Mesa –now the new director of the University of Texas Cancer Center in San Antonio –and patient Joyce Niblack in Scottsdale, Arizona  To register.

And what would coverage of ASH be without checking in with Dr. Srdan Verstovsek. 

Photo credit:  From Patient Power video

We didn’t make it this year but Andrew Schorr’s wife, Esther, and his Patient Power crew did and got his thoughts on interferon as well as new combinations of drugs working their way to approval.  There’s the usual unfortunate plug for patients to get into clinical trial (see the conclusion of the Sanofi feature in this issue for an alternative view) but, as ever, Serge Verstovsek remains one of the most intelligent, experienced and committed specialists in the business. (Plus he has a great accent.) The video is here 


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The Small Donation Program — Any amount from $5 but nothing over $100.

MPNforum, PO Box 17142, Asheville, NC 28816
Donations to MPNforum are not tax-deductible

December Update…List of  273 Patient-Recommended Hematologists from 23 Nations & 41 States

The MPNclinics – 302 answers to 141 Patient questions… with Index

Stem cell transplant — comprehensive patient/physician perspective

THE ARCHIVES:  A Visual Catalog of MPNforum Articles. ..

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© MPNforum, LLC ,, and the MPNforum Quarterly Journal 2017. MPNforum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. Reproduction is permitted provided full and clear credit is given to authors and with appropriate and specific direction to the original content.






















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