MPNforum Magazine

February, 2014. Pub: January 15 2014

In the midst of the self-absorbed hurly burly of publishing, reality suddenly clamps a hard and icy grip on our hearts. We need to stop editing stories and take a breath. 

Yes, of course we need to report what Sanofi doesn’t want us to know about its deadly SAR302503 Clinical Trial.  And the Zebra Coalition fight for MPN Patient’s Rights needs our voices to be raised in Washington.  There’s news of drugs and the Fatigue Project, the new MPNclinic season to announce.

 Let it all wait.

This is a time to stop and take a breath because our world has been severely shaken. Faced with mortality – faced directly, forcefully with the yawning chasm of death and dying —  all else fades in significance.

We can conceive of our own deaths and a world continuing on without us.  Usually it’s a convenient abstraction we can trot out in conversation. Ultimately, for all of us, it is the hard and eternal reality right before our eyes. Inevitably, those of us left behind need to find a way to go on.

This year has gotten off to a terrible, soul-shaking start.  We need to take a moment to back off, reflect on the revelations that rolled down on us as 2013 ended and 2014 howled in on arctic winds, its frozen streets and highways seasoned with salt, ash and tears.

Friends we have relied on to be in our world are no longer among us.

Friends and family sleep tonight at the precipice, in hospital beds hooked up to monitors and IVs.

Ian Sweet is gone.

But of course he’s not.  His presence, his wisdom, courage and steadfast support for all of us doesn’t vanish. His love for family and friends doesn’t alter.  Living memory, like the reality of DNA unfurling in children and grand-children, is the celebration  of  life and the human spirit beyond the chapel farewells.

We know it from biology. From physics.  It’s an ancient truth. Everything changes form all the time; nothing is destroyed.

All flesh is grass,
and all its beauty is
like the flower of the field..
The grass withers, the flower fades…

There is a tribute to Ian here, a small addition to the flood of grief and acclaim published on his beloved MPN-NET and across the internet as news of his departure spread.  This one is from his homeland, from Australia, as if we needed to be reminded that from a place so distant and remote from centers of World population, a living human voice can reach out and sustain us all across oceans and continents.

Patsy is gone.
After enduring the trials of her stem cell transplant against all odds, she recovered, suffered a setback and last week began to slip away in her South Carolina home, on a morphine drip, surrounded by family.   A few days ago, she moved on.  She told her SCT story openly and fully to her friends in the MPN community and shared her SCT procedures, photos, hopes and setbacks on Facebook. She spoke her mind and was a good strong friend.  There is a page in honor of Patsy Bushee here available for you to sign and add your comfort to her family. And Ann Haehn shares her memories of Patsy in Honey, a tribute.

For all that, for all our losses, we turn the corner.  Life is resurgent.

This week Frank is ready to leave his SCT bed at Duke University, hopefully  freed of myelofibrosis.  Harvey is in a hospital bed in San Francisco, his leukemic cells beaten back by Vidaza on his way to recovery.  We are pushing back the encroaching borders of MPN, finding new paths to control and roll back its effects.

In the spirit of celebrating life, there is another sure sign we are not alone.

The MPNclinic doctors are back on duty, ready to help us find our way through our MPNs. It would be hard to overestimate the generosity of spirit that brings the world’s foremost MPN clinicians and researchers to our side.

And with that we return to the January-February issue of MPNforum.   (In commemoration, stories in this issue will be published on a staggered schedule as indicated in the abstracts, below.)

The MPNclinic’s doors are open now... 

There is no equivalent in the cancer world, perhaps not in all of Medicine.  The leading MPN specialists from the world’s major medical centers — Weill-Cornell, Stanford, Guy’s and St Thomas’, Sloan Kettering, Roskilde,  Mayo Clinic,  MD Anderson — assemble to answer patient and healthcare provider questions in an open, free and public international forum.   (Click HERE for 3 steps to get your MPN questions answered in the opening session.)   

What Sanofi doesn’t want us to know…

It has become clear since Sanofi’s abrupt termination of the SAR302503 trial November 18 that the French drug giant does not want to reveal publicly what actually happened. The conclusion of our preliminary investigation — as we await documents from our FDA Freedom of Information Act request — reveals part of that story. (This report will be available Monday, January 20.)

TSR- The Senyak Report… 

The Mayo Clinic Team wraps up the new MPN Fatigue Project survey… Patient Rights and the Zebra Coalition petition (“Nothing About Us Without Us!“) …  New Associate Editors poised to take over… Promedior heads for Round Two…the MPD Voice tapes 

PLUS:  Jeremy’s New Year’s Resolutions… KDF reports on MD Anderson and Patient Power event … (TSR plus these features available Friday, January 17.)

Take action: Remember Sanofi. Be a Zebra.

Join the taskforce to petition government and private sponsors of research to guarantee MPN patients on clinical trial the right to be informed of developing risks. Just type “Zebra” in the subject of an E-mail to ourMPNforum@gmail.com

You can read the current issue of the Q … right here!

How I treat MPNs? …Silver, Mesa, Hasselbalch, Harrison

Aspirin, Platelets and Thrombosis… by J.J. Michiels…

Interferon instructions for my patients… H.C. Hasselbalch

The List — 100+ Patient-Recommended Hematologists

The Catalog of Articles. ..

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