MPNforum Magazine

https://www.nytimes.com/video/players/offsite/index.html?videoId=videotape-barcena-cov-pores-1254w

https://acsjournals.onlinelibrary.wiley.com/doi/abs/10.1002/cncr.32664

At 3 years, 40.8% of patients had stopped ruxolitinib. Baseline predictors of drug discontinuation were: intermediate‐2–risk/high‐risk category (Dynamic International Prognostic Score System), a platelet count <100 ×10⁹ per liter, transfusion dependency, and unfavorable karyotype. At last contact, 268 patients (51.1%) had discontinued therapy, and the median drug exposure was 17.5 months. Fifty patients (18.7%) died while taking ruxolitinib. The reasons for discontinuation in the remaining 218 patients were the lack (22.9%) or loss (11.9%) of a spleen response, ruxolitinib‐related adverse events (27.5%), progression to blast phase (23.4%), ruxolitinib‐unrelated adverse events (9.2%), and allogeneic transplantation during response (5.1%). The median survival after ruxolitinib was 13.2 months and was significantly better in the 167 patients who discontinued ruxolitinib in chronic phase (27.5 vs 3.9 months for those who discontinued in blast phase; P < .001).

https://mpnforum.com/jakafi-the-other-face/

There’s a certain full circle symmetry to this story. CR&T.  MPNforum.  Jakafi.

MPNforum launched nearly a decade  ago, in April 2011. In that same year we attended our first CR&T conference and cheered the FDA acceptance of the first approved MF med –Jakafi.

In this Fall Issue,  our coverage of the  CR&T Symposium  —  a free virtual event next week —   and a review  of Jakafi’s impact on our MPN community is our last act. MPNforum Magazine has done its job. It’s time to leave.

Requiem

Anemia – Fatigue – Hepciden and inflammation   https://mpnforum.com/lexaptepid-and-inflammation/  (2014)

MPD- NYC  https://mpnforum.com/nyc-goes-mpd-for-a-day

October, 2011 0 CRT meeting – Long, MPD Jakafi  (DA approved in Nov,)

2009 DX of MF by Silver

PHOT CRT CONFIRMATION

200 in Fl started…

Joyce NIblack – Moederaiton Quiter

Bob Tollen to resuce

Co-manaGED mpd CHAT, Judy cukston started

 With Manuela manuel

Genetics for MP  with Ian Sweet at MPN-NT

Hisotry of the Email groups LINK

Photograph: Julie Libon

The CR&T Patietn MPN Syhposion of 2011 changed my life.  It cost a cople fo hundred dolalrs.  You had to travel., pay for a New York hotel the night before, eat at NEyw York priced restaurants. You ahd to wear a Jacket eto get into and particatep in the event. At some fancy Eat Sie venue

The successor to email groups MPN Net and MPDChat MpnForum was already six months old. But I sat at a table with Mary cotter and her husband RABrtian.. It’s where I met Bonnie Evans and her husband Joe>  Serge Verstovsek, Ruben Mesa.  Dick silve was already my consulting Hem. (thanks to Bob Tollen). Bob Rosen, Barbara Van Husen. 

That’s when JaKAU WAS CLleared by the FDA for MF, the JAK2 inhibortr ruxolitinib. That’s when we kjicked M)Nforum into gear and never loiokjed back.  Almost a decade

 Until 2020

You can go to the 2020 vurtual CR&T meeting and get to hear and see some legendary MPN scientific and medical figures – Hans Hassselbalcvh and Dick silver et>. But you won’t.  Even though it’s free. EWven thgoiugh you can sit in front of your pandemic secure computer and just tap in a few keys.  Why should you?

Today you can dial up a podcast, watch a video on YouTube, Tweet out a response, click on a Facebook Like at one fo the dozen MPN group pages.

  MPNforum once held the rfevolutionary ground of the first graphic on-line mPN magazine.  The first National  were we the first oganzation to adodpt the WHO appellation MPN instaed of MPD The First  we were the first to display long read stories and color photographs of hematologists specialsits, fellow apetiens, and present columns by patientsm scientific  and investigative reports.

In the end – and this is the end, my Friend –  after well over 800,000 patient visits to our pages we’re moving on.  So let it end, the way it started, with thuis CRT meeting.

(We covered Four exhausting ASH conferences, the fries and fall of IMeltnib, the disvoery of CALR,  the puboischot of MPNForum Research Posters I,   We never made a dime. Never ttook a PENNY  from a drug company.  Never paid a dime to any contributor. We were broke all the time, sustained by nickel and dime donations. And my ET became MF in 2011sm and Tefferi… Black Lives May Matter but not in the FB universe of MPN pages. The Lily white and sometime shade of brown ,

Robyn Scherber moved from Pheniux to San Ant9ojio to INCYTE.

The Foundation funded

The CREASTE Seminar<  the Zebra Coalition, the Fatigue Projectd.  (Ho0-hum… the new generaton of MPN pateitns ahs Netfliux and AmaZON Prime And Hulu, has Facebook and YouTube and a pandemic and a political 24/7 crisis, and protests and meltdown of the once great American economy.)

Racism – Tefferi – RobyScherber.. the video getting along by ong along service – Incyte domination….FDA worst ever approval of PV JAK, today  bias and lackj of oversight

LINKS for all the JAKAFI stoirs

LINKS forall the CRT stories

Links for INTERFERON, FOR CRISPR< for FATIGUE PROJECT for ZEBRA COALITION…

The SCEINCE SARS stories, the NYT SARS stories and graphis

The INTERFERON STORIEs from SCIENCE  (CLIP and QUOTE)

______________

The conj7ucidto9j of CRT, MPNforum and Jakafi couldn’t be clearer.

MPNforum  served its purposes, the first national organization to use MPN instead of MPD. Bring patietns and physicians into each other’s visual universe.. Long read graphically illustrated stories, Personal anecttso investigative reproing, advocacy – The Zebra Coalition, the Fatigue Projecdt – contriute to science, multiple ASH papers and postes, — debunk the JAKAFI myths and hold INCYTE’s big feet to the fire..expand awareness of Interferon through scientific and historical reports, introuct the MPN COMMUMIT to CRISPR anad gene editing through articles, seminars, interviews.Ex0pose Sanofi’s mismangemetn of the Fedratinib trial and mistreatment of MPN patients,   amd pblish details o the outsided corrupting influence money – much of which supploied by Incyte from the profits of its billion dollar Jakafi drug – has on clinical trials and the objective presenatiaotn of risks and benefits .,

And we did it all, together, with no money, no grants.

Sustined by small donations, Always a patient cooperative, . Not one dime received from drug companies nor paid to creative contdributers to the pmagaisne>

We started with a host of columnists and contributors that graduatloly dwindled through death, disease, the impact of technology and the arrival of shorter, more agile and immediate, individual world of ever more brief social media  — blogs , Instagram, TikTok, Facebook, YouTube, Twitter..

We end with coverage of CRT and feaurea hans hasslealbh one of our favorite researchers and MPN specialists. And a final look at Jakafi, whose arrival was cheered as the beginning of our m nagement and possibley  cure., We take a clear eyed look at othe real impacdt Jakafi has had on our community’s health and dfuture.