International MPN News, Science & Opinion

Summer, 2016

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Summertime popsicle

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Summer, 2016 is a big issue, a gallery of photos, opinion, medical news, and a collection of short stories. So how about a quick tour before you dive in.

Clinical trials are on our mind. Next week Dr. Ayalew Tefferi reports on imetelstat at ASCO in Chicago and we get an update on pacritinib. Tefferi at podiumOur imetelstat story is frankly designed to strip away the hype and explore why the telomere Nobel Prize winners distance themselves from the drug and Geron….and suggest you consider sitting this one out.

We present a collection of clips, notes, charts and stories to help explore the thorny dilemma of Stem Cell Transplant vs Clinical Trial options ….And take a fresh look at Cachexia,  the most ignored and deadly sign of advancing blood cancer, and how to recognize and manage it…

You’ll meet some of the folks behind the new non-profit MPN Action Network and MPN Community Support get a closer look at  Ann Brazeau and some upcoming  MPN Advocacy and Education events …And TSR is back with a random sprinkling of items to illuminate your Memorial Day weekend…

                           Best wishes from all of us at MPNforum for a creative, healthy summer!

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Imetelstat’s tortured path to approval.

Effective, toxic, failedJJ old fashioned and successful in prior clinical trials, reset by the FDA, abandoned by its Nobel Prize-winning discoverers.  Now, Imetelstat: The Myelofibrosis Trials.  Brought to you by Johnson & Johnson. (Don’t rush.)   Could be the strangest finding of all is any effect imetelstat is likely off target. There might be something positive down the road but you might want to sit out this round, if possible. (Here’s why.)

 

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The Choice: Clinical trial versus stem cell transplant?

Usually we have months or even years to consider stem cell transplant or clinical trial. But when it comes down to a choice  how do we assess medical risk in the absence of complete information?   Given the stress and pressures of  advancing disease and declining option, some advance planning is reqiured. Here’s a collection of notes, exhibits, prejudices and press clips that might help. (Read on.)

line short redCachexia, the warning sign we dare not ignore.

There’s good news and bad news about cachexia. The bad news is it looks scarycchexia fiddle feels awful and sends life into a weak-kneed tailspin. The good news is recognition of cachexia and evolving natural treatment are changing our therapeutic landscape. (The story is here.)

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Hats off to MPN Patient Support…Enter,  MPN Action Network 

“That’s about the time we all decided to put on hats.  Cheryl easily won whatever doorprize popup skype partythere was with her blue velour cap sporting buffalo horns. Julie had a cool fedora and the rest of us pretty much grabbed what we had laying around.” (What’s it all about?) 

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The long journey of  Ann Brazeau.
Ann Brazeau has been on a long journey leading her to an inevitable destination: MPN Advocacy and Education International. A natural organizer and communications specialist, she grew up in Detroit’s inner city, graduated from Michigan State and headed out to Southern California for a spell before heading back home. (The rest of the story is here.)

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Medical treatment, the 3rd leading cause of death in the USdots sml  Julie did it again in over the top hike (and paddle)dots sml Medicare gives thumbs up to MF SCT costsdots sml Ready for another WHO reclassification of MPNs?dots sml Score a big one for immunotherapy.  (TSR is here.)

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                             Run, Walk, Crawl, Jeremy Smith           Ascites and edema, D. Arch

jeremy           arch300

 

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The List of Patient-Recommended Hematologists 

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

mGEN-logo FINAL tightThe MPN Genetics Network .. Report on CRISPR gene therapy

The 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 2016. 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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