International MPN News, Science & Opinion

We said good bye for the summer. We published MPNforum and the MPN Quarterly Journal and didn’t plan to see you again until September. But a few things happened to change all that. News in the past two weeks drove publication of this special summer bulletin.

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Kelley Lanier

One of the MPN community’s Kelleygood friends, ejected from the Mayo Clinic, Rochester CYT-387 trial, contracted pneumonia shortly afterward. Two weeks ago, he succumbed. The story and a tribute to Kelley Lanier is here.

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Pacritinib steps into the ring for the final rounds.Pacritinib SB1518

It’s been a long time coming but now a JAK2/FLT3 inhibitor with real promise for myelofibrosis patients with low platelets is in Phase 3 test. Here’s all the background, performance, and contact information you need to get up to date. if you’ve failed ruxolitinib. (Jakafi) or have been disqualified because of thrombocytopenia, this might be an option for you. (All about pacritinib, here.)

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The Foundation — A chance to do some good.

We don’t have to agree with every policy of the MPN Research Foundation and they don’t always agree with MPNforum…but why quibble. These are the good folks who power the most significant, scientific MPN basic research. Period. They are our best and only option.

mpn-logo advancing blood cancer rsrch 2-2014 Everything we’ve learned in the past decade about how this disease works, all the big breakthroughs like JAK-2 and CAL-R and everything in between, bear the Foundation’s fingerprints.

They search out scientists, initiate creative projects, scrupulously vet grant proposals and shell out millions – over $10 million so far – for MPN research. (And the top two officers receive bupkes. zero compensation.)

I imagine I’m about as far below the poverty line as anyone in our community but I donate to the MPN Research Foundation. It’s just naked self- interest, hedging the bets for me and my MPN friends. Consider it. The opportunity is here. It’s quick and easy and the benefits last a lifetime.

And now there’s an easy additional way to help our cause. We’re in favor of buying Local. Truth is though, like you. we buy stuff from Amazon anyhow. Without changing anything else you can buy through Amazon Smile and designate the MPN Research Foundation as your beneficiary charity. That way a percentage of every Amazon purchase you make goes to our Foundation,.

Check it out. The link is here.

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Become a Patient Advocate

The FDA business green light we were given to proceed in developing a Patient Advocate program means some of us need to take action this summer. Fielding a Patient Advocatepatient advocates cropped for clinical trials requires candidates step forward to participate in a training and certification program. Proposals– including responsibilities and compensation– will be sent to Sponsors and Contract Research Organizations. If you’re interested, e-mail ourMPNforum@gmail.com and put “Patient Advocate” in the subject line and anything you care to say in the body .

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FDA — Appeal rejected. We’re not the only ones. ALL TRIALS are our allies.

The FDA has rejected two requests for clinical trial information under the Freedom of Information Act and two formal appeals. We wanted to know what Sanofi knew about the dangers inherent in its experimental drug and when the FDA found out about it. The need to know — the right to know — about clinical trials in which we volunteer is critically important to our doctors and to all of us. ALL TRIALS is doing something about it. Please see the video and consider participating.

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And now…

GOne Fishin

 

…See you all in September. Be safe, feel good, have fun.

 

 

 

 

 

 

Comments on: "Special Bulletin, July 2014" (4)

  1. Dave Dickover said:

    As a long time patient, I’ve tried several treatments. Recently I experienced a troublesome time with spleen pain. I went off Jakafi and my spleen took off in growth. I now am back on Jakafi and my spleen is smaller than ever since my diagnosis.

    Thanks for the input.

  2. Patricia Basset said:

    We are new to this disease and we appreciate your effort to give us new information. My husband, who has always been super healthy and very strong ( for a 90 year old) recently was diagnosed with myelofibrosis. They first told us he had only a few months to live, but after three transfusions and 6 weeks of epotine-alpha, he is feeling good again and his count was up from 7 to 12.3 – and we at least have hope he may have a few more good years. Life is uncertain, but we want the best info available to make his last years good ones. Gil has that ubiquitous fatigue and a fairly chronic backache, but his attitude is good and he is smiling again and is working outside everyday. We went to the MPN symposium in San Mateo to learn about this disease, but we still want to keep up with ongoing research, so thank you again for your updates. Patricia Basset

    • Thank you for your kind comments, Patricia. It’s good to keep up with current options when managing MF. The MPN Quarterly Journal (www.mpnjournal.org) has archives you can access by just mousing over the word ARCHIVE on the cover. There you’ll find “How I treat MPNs..”as well as other current papers by specialists. The MPNforum archives are very extensive. You can get to those at http://www.mpnforum.com, head for the bottom of the page and you’ll see a link the Catalog of Articles. Well worth browsing just so you know you’re not alone. Good luck to you both.

  3. Thanks much for the updates Zhen.

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