International MPN News, Science & Opinion

Fall, 2017

forumsphere stretched 

The end of an era…the start of an epoch.

When MPNforum launched there was no Jakafi, no approved MF drug, no CRISPR. Today we have proof that gene therapy has effectively blocked the course of a  leukemia and a new world of precision medicine has opened up….Back then the Forum was essentially our only means to actually see what we and our doctors looked like and explore MPN science.  Today we have vigorous social media, professional graphic newsletters, blogs and videos.    We couldn’t be switching publishing gears at a more promising time. After coverage of the ASH meeting, we will suspend regular MPNforum Magazine publication, archiving all issues for open patient access.  In 2018 we plan to launch a new publication, MPN Science and Medicine.     (More about all that here).

 

Photo: NYT

 

Gene therapy scores a blood cancer TKO with FDA blessings…

What does it mean for our future MPN treatment options?   Gene therapy and CAR-T can no longer be foreign words for us. It’s the new treatment model and is here to stay.

  Here’s a breakdown on how it works, how it started, where it’s going and what the real risk, benefits and costs are going to be. ⇒ ⇒ (THE FULL STORY.)

 

Will your ET or PV progress to MF?  

Harvey Gould

 

The MPN Research Foundation, the Harvey Gould Fund and top docs plan to find out.

Will your essential thrombocythemia or polycythemia vera progress to myelofibrosis? ... Which clinical trial is your best bet?  Do your meds work?  Answers to all those questions  depend on precise knowledge of biomarkers.  Discovering and exploring biomarkers revealing the progression of ET and PV to MF is now a major joint effort conceived by Dr. Srdan Verstovsek and  led by the MPN Research Foundation.

Contributing to the effort is the brand new Harvey Gould Fund set up by the family of the MPNforum’s own friend, columnist, humorist and storyteller.  He left us much too soon, a victim of our collective ignorance of MPN biomarkers pointing to progression.  (The story is here.)

 

 

When survival is not an option.  We hope for a cure, for relief. We  explore drugs, alternative remedies,  possible clinical trials,  stem cell transplant.  But sometimes the path is clearly blocked.  ⇒  (A reflection on end times, )

 

TSR mast

 New life for Patient Support Groups.   Reach out and touch someone as MPN Advocacy and Education leads the charge, expanding patient support.  Here’s their  free Peer Support Group manual…and their Third Annual  Women’s Conference program, next week in LA. ⇒ HERE is the story .  

Should you join  the Foundations’s new myMPN patient registry program?  We’ve covered The birth of myMPN … the ambitious patient MPNRF patient registry project. Now the program is ready for you to join…or not. Here are the basics  everything you need to consider signing up. (Right HERE ‎

 Brought back by popular demand, a tribute to Blood Cancer Awareness Month, MPN Awareness Day and the Special Place Incyte holds in our hearts, minds, spleens and wallets.   (The celebration is right HERE)  

The Big Apple MPN main event is just around the corner...CR&T’s 9th International Patient Symposium on MPNs will be rolling out November 1. This annual event sponsored by Dr. Richard Silver and his colleagues typically boasts top docs and researchers in a lecture/workshop format. For details and the poster,⇒⇒ (Go HERE)  

Lone Star State gets another star but is Ruben Mesa really leaving us?  ⇒⇒ (The story HERE )   

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

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

September, 2017 Update…List of  270 Patient-Recommended Hematologists from 21 Nations

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. ..

Subscribe to MPNforum

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Tell your story, express yourself, share your experience in your MPN magazine. You can add your comments to MPNforum articles, list your Blog, or write an article. (We’ll even help you get started.)…Letter to the Editor

For information Contact: ourMPNforum@gmail.com

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© MPNforum, LLC , MPNforum.com, 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 MPNforum.com with appropriate and specific direction to the original content.

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Comments on: "Fall, 2017" (2)

  1. Donated and so appreciate the time and efforts put in to keep us updated on MPNs. I’d be lost without the updates and information and friends on the MPN forum…long may it continue and I hope I’m around to see CURES! Thank you ZHEN.

  2. Louise Haugh said:

    Wow, what a great page. I especially loved Zhen, remarks thoughts and feelings. Thank you Zhen and to everyone who helped in this project. Louise Haugh, MF

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