MPNforum Magazine

This Special Issue of MPNforum Science & Medicine is dedicated to the memory of Robert Rosen, founder of MPN Research Foundation, and all those friends who suffered through late stages of myelofibrosis but never lost their deep commitment to the MPN community. And to the men and women who have renewed or lost their lives in the course of stem cell transplant… and those who are now beginning that challenging, promising journey

Zhenya Senyak

Stem cell transplantation, long viewed as the final option for desperately ill MPN patients, needs to be restored to its rightful place in the spectrum of available therapeutic options for intermediate risk, healthier individuals.  SCT is the only cure available to MPN patients.  While there are risks of injury, long-term side effects, and even death inherent in the procedure, the odds of success soar in our favor when entered into by qualified patients under favorable circumstances.

In these pages of MPNforum Science & Medicine we focus on the reality of the SCT procedure, the means to reduce the risk and a look at some of the SCT resources available to us.  Stick around. There’s stuff here that can save your life.

Introducing the SSTT

What if we could have a portable web-based traffic light to alert MPN patients to their MF risk status and treatment options? Now we do!  Try it out right here.

“A very good physician.”

Everything you need to know about SCT risk and reward, an interview with a top European transplantation expert, Professor Nicolaus Kroeger.

The surprising results of the MPN Patient Care survey

Why do myelofibrosis patient delay SCT?  Why do MPN patients with ET and PV turn to on-line support groups for answers to medical questions? The answers may lie in the survey’s unexpected finding.

Cheap, affordable, approved Pegasys!…. Remember Nathalie Cook? Her Food for Thought columns in the early MPNforum were a bright, much-needed contribution. But she didn’t make this issue’s TSR lead story because of food…

Nathalie & Ken at the official Minister’s announcement

It’s something else she helped cook up. Continuing on with the intense work of Ian Sweet and Ken Young, founder of MPD-OZ, Nathalie and friends at the MPN Alliance Australia scored a big victory for Pegasys Down Under...After seven years of advocating for MPN patients with Roche (maker of Pegasys) and the Australian government, petitioning to have Pegasys approved and its costs subsidized, last week the announcement came. Victory!  Speaking at the official government function in Melbourne announcing the new policy, Nathalie explained “From 1 August 2018 MPN patients will be able to be prescribed Pegasys by their doctors at a cost of $39.50 (or $6.40 for concessional patients), instead of over $18,000.00 per year. “The important fact to be noted,” says Ken Young, is that this approval of Pegasys…. is the first patient led listing in Australia. It was not initiated at all by the pharmaceutical company.” He attributes this roaring success to “Nathalie’s persistence and dedication. ”  These aren’t just words folks, but hard, time-consuming work and proof, once again, that patients can make a difference. Good onya, Nathalie, Ken and the MPNAA  (More details here.) 

Off the beaten path department:   Noodling around the Internet looking for SCT resources we ran across BMTinfonet and Susan K Stewart. A sociology graduate of Northwestern and a consumer advocate, Sue is a transplant survivor herself (1989). She founded and runs this patient support network. It’s worth a visit to browse its wealth of resources: video library, free brochures, books, advice, and a comprehensive on-line database of transplant centers.  BMTinfonet also runs an annual Celebrating a Second Chance at Life Symposium, bringing together transplant patients, caregivers and speakers.  The videos from this year’s conference will be transcribed shortly. That’s a really nice feature on the site:  Video, key points highlighted, and full printed transcription.  Check out the intro to GVHD: to see how they do it.

We headed over to MPN Advocacy & Education to check on the upcoming Fourth Annual Women and MPN Conference  in Chicago end of September. Drs. Robyn Scherber and Brady Stein, a couple of the Forum’s contributors are among the seven specialists  presenting at the event.  The Women and MPN Conference is followed the next day by a Pediatric MPN meeting.   While you’re at the MPNA&E website check out their report on positive results for a phase 2 trial combining Jakafi with cortico-steroids for the treatment of some types of GVHD.

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

  July, 15, 2018 Update    List of 276 Patient-Recommended Hematologists from 23 Nations & 41 States

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

Stem cell transplant — Six front-line stories and some vital links.

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

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