The pre-publication Summer Issue is now available to the family of MPNforum Subscribers. It is password protected.
The link is: https://mpnforum.com/summer-2017/ The password is: summer
We publish at 3PM ET today… so in case you note significant errors please let me know at firstname.lastname@example.org so we can make necessary corrections before going public.
*Note: The link at the end of each story returning you to the home page will not work until 3 PM.
MPNforum’s Summer issue will be published at 3:00 PM, Wednesday, June 14.*
Last rites for Momelotinib…The raw truth about Stem Cell Transplant…Dr. Ruben Mesa’s stunning announcement…Jane Frantz: acupuncture beat her MF….FATIGUE PROJECT heads for drug/alternatives clinical trial…CONTEST: Name that trial….New Study on Interferon early use…Review: Dr. Jerry Spivak’s take on the state of MPN therapy…And an updated List of 262 patient-recommended MPN docs.
All at www.mpnforum.com.
Enjoy your summer,
Good morning… Here your advance copy of tomorrow’s MPNforum, Spring, 2017
This is a packed issue: Three stories – PEPPE THE FIXER, the ROBERT YOU NEVER KNEW and THE BIRTH OF YOUR MPN… plus a fresh update of List of Patient Recommended Hematologists: (now 251 MPN docs from 19 Nations)…. Breaking news of the powerful new MPN PATIENT REGISTRY that’s going to improve our odds,..NEWS from patients around the MPN world…DIET AND INFLAMMATION…an expert panel on SCT from the archives…and more.
As ever, please let me know if you run across any typos, errors, or problems so we can correct them before publishing tomorrow — ourMPNforum@gmail.com. Many thanks.
- And of course you’re welcome to express your thoughts in the COMMENTS section that follows each story,.
IF YOU READ ONLY ONE MPN STORY THIS MONTH, MAKE IT THIS ONE
This is an American story of an MPN patient, her family and her physician. Her story sheds light on the real impact of choices we all must make in the broken US medical system.
“I feel like I have been sacrificed for research …. When I tell you my story you will understand. …My reason for coming out of the shadows is to educate others before what happens to me happens to them.”
This is the story of one of our own, She lived the full range of MPN treatment options. Our options. This is Peppe’s story, The fixer of everything. https://mpnforum.com/peppe-the-fixer-of-everything/
After reading, you are welcome to join the discussion. Because we are together, we do not suffer our MPNs alone.
Next week, the full MPNforum Magazine Spring Issue.
Keep well and keep in touch,
What causes an MPN? Are my kids likely to have an MPN if I do? Why are some MPNs so aggressive? Answers to these questions might be found in a review of new work in molecular biology published today in the MPN Quarterly Journal, http://www.mpnjournal.org. The research, spearheaded by Dr. Jason Gotlib (Stanford), uses the 23andMe MPN patient database.
The Spring Issue of MPNforum will be published March 14, 2017. If you have a good hematologist to recommend you can head here https://mpnforum.com/good-doc/ With nearly 60,000 visits logged to date the MPNforum List of Hematologists is one of the most vital tools available on the Internet to fellow MPN patients looking for help. The deadline to add your recommendation is Friday, March 3. Please do consider it. This is a real lifeline for patients and only takes s minute or two.
Our friend Dr. Robyn Scherber (Mayo Clinic, Oregon OSHU) is working on a diet and nutrition study for MPN patients. She has done excellent work in the past in developing significant papers in symptom assessment, co-morbidities, and alternative means MPN patients use to alleviate symptoms. When published this study should help us better understand what to reach for in the fridge…and what to leave alone. To participate here’s a link to the on-line survey
Hope all is well with you this unsettled Season. Balmy weather today pretty much across the US and UK… drenching West Coast storms..
Dr. Richard Silver, certainly one of the most senior and eminent MPN specialists on the planet, has weighed in on the HU versus INF results reported in the current issue of MPNforum.
All experts conceded the results were preliminary and cautioned against jumping to conclusions about the superiority of one agent over the other. However there was indeed widespread surprise in the outcome, particularly at the ability of HU to lower the JAK2 mutant burden. The MPD-RC study author, Dr. John Mascarenhas said: HU can in fact induce hematologic and even bone marrow responses as well as molecular responses and this was somewhat unexpected although others have published similar results previously.
Dr Silver, who was not surprised, places this finding in its historical perspective. His brief comment can be found immediately after the article at https://mpnforum.com/round-one-title-fight/
The Winter MPNforum Issue is now available…and it’s filled with surprises.
Mark your scorecards for the HU vs. Interferon title fight for MPN front line standing. The preliminary results are in from two big international clinical trials. Round by round results and a truly surprising decision
Momelotinib, our last backup to Jakafi still standing, has had its ups and downs. The Winter MPNforum looks at its realities through the eyes of two myelofibrosis patients taking the experimental drug, the doctor running their clinical trial and the views of a powerful hematologist.
And then for the the first time ever, nine of the world’s very best hematologists share their take on significant ASH development in brief summaries directly with patients in brief summaries.
All that plus feature stories, opinion, lists and Seasonal Cheer.
Happy Holidays from the crew at your MPNforum Magazine