International MPN News, Science & Opinion

Jakafi and broccoli – July, 2012

July, 2012, Vol.II, No.6

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On the Porch

A lazy summer afternoon. I came out to the porch with coffee and a sketch pad to sit a bit and figure out what would work. Jenny was out there, vaguely checking out squirrels up in the maple trees. Off to the side  I saw the pot of wildflowers just coming into bloom.  Hopeful, youthful and abundant.

Laying out this July MPNforum issue posed some stiff problems. The last few weeks were a summer festival of hematology meetings, with papers and abstracts overloading our computers.

I planned to lead off this issue with the Tefferi attacks on Jakafi. For the past nine months Dr. Tefferi  has published very public and sometimes strident questioning of Jakafi’s safety and effectiveness,  These summer meetings gave the Jakafi investigators  a chance to present their data in rebuttal.  We have that story in graphic format, slides and  PowerPoint presentation… Dr Tefferi also e-mailed his response to MPNforum so it seemed a natural choice for a lead.

Problem is most of us look at MPN science reporting a bit like broccoli. It’s good for us but not that easy to swallow.  Most of it is written in some weird version of English with statistics and graphs designed to communicate with a special subset of humanity.  What are we supposed to do with that?  So generally, with a few exceptions, we let our eyes glaze over and let it slide.

But not following the science has consequences.  In this dustup over Jakafi, for example, there is real research, real people asking questions, administering drugs, analyzing and reporting results. And until the safety and effectiveness issue is fully resolved there are real people suffering big spleens and painful, lousy lives.

And then came the news.

I got it Thursday night.  Ian Sweet, the most senior MPN-NET Listowner reported his PV had unexpectedly progressed to AML  He and his wife Marie were shocked. He’s preparing for radiation therapy. Acute Myeloid Leukemia is one of those dreaded endpoints of our blood cancer. There are aggressive treatments available. For years, there have been arguments and studies on cytoreductive therapy’s contribution to disease progression, on hydroxyurea’s leukemogenicity.

Sure, those are big words but news like this puts things into focus. We’re no longer talking about words, statistics and possiblilities but a friend and  leader of the MPN community.  Do we know what our chances are of converting to AML, what the treatments are, what the options are?  It’s no longer about science and datasets but each of us… and Ian.

With a bigger staff we might have ripped up the front page science stories and started all over with this one.

But an MPNforum issue is a balance of light and dark and on my sketchpad were a couple of stories competing for attention, a touching video from Alison, a musical journey through PV from Manuela..  I found myself doodling about a late arriving poem by Arnie, A stranger came to my cottage door.  There are columns – a dramatic challenge from Patricia, a Dr. Arch antioxidant piece illustrated by Ellen Jacquart, Harvey’s long winding road trip.  And Jeremy is back, jumping into the Forum with both feet, offering up a colorful, wide open story of starting over.  Like those wildflowers overflowing the pot. In two weeks, we’re publishing Jeremy’s story along with a comic lyric opera (in drag) by Chris Harper and Dr. Mike’s Olympian trials. Stay tuned.

Meanwhile, try the broccoli. It’s really not that bad.

Good luck, Ian…our prayers and hopes are with you.

(Click on RED link to access articles)

 Contents…

    Jakafi:  Thank you, Dr. TefferiEnough already, please....

     Dr. Srdan Verstovsek, Therapeutic advances in MPNs 

    Dr. Jason Gotlib, A master class in MF via slides!

     Progression to AML,  Ian Sweet...

    Dr. Richard T. Silver,  On bone marrow biopsy.

MPN Research Foundation Symposium Presentations.    The List of Hematologists...

        The Catalog of MPNforum articles.

 Stories…  

     Alison Scott, The life I had... Manuela Manuel… Thank you for the music 

 Features...

.    Poster Art: One MPN World, Di Gantze Velt... Poet’s Corner: Arnie McConnell, A man came to my    cottage door, .

 Columns....

      Patricia Wagner’s Mind-Body-Spirit challenge…..Dr. Arch on antioxidants... Harvey hits a pothole on the Long and Winding road.


Tell your story, express yourself, share your experience in your MPN magazine. You can add your comments to MPNForum articles or write your own story or Open a discussion with your…                       …Letter to the Editor..

For information 

contact: ourMPNforum@gmail.com

   

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