January, 2014. Pub: December 16, 2013
There was a sense of mission about this ASH event, a need to get to the bottom of things. There were at least two baffling contradictions in the MPN events at the ASH 2013 New Orleans meeting… plus the shocking Sanofi action (see TSR, below)… a Grand Opening of The Fatigue Project… and a most amazing breakfast caught in a short documentary.
An experimental drug at a very early stage of investigation might prove to be, for some, an alternative to stem cell transplant. The drug shows such great promise that those suffering from advanced MF or AML, unresponsive to traditional interventions and unqualified for SCT, might well consider participation in a clinical trial under appropriate conditions.
The presentation of these findings and the surrounding infrastructure necessary to bring the drug through clinical trial to approval raises many doubts that need to be resolved in coming months. (Story here.)
In the run-up to ASH, a profoundly important new genetic discovery explodes on to the MPN scene. Over the long term, this discovery may be even more significant than the JAK2 mutation discovery.
The immediate effect on diagnosis and treatment is minimal. (Story here.)
And then there’s the Grand Opening of The MPN Fatigue Project at ASH and Breakfast with Harvey, with a new episode of The Long and Winding Road plus a look into the Poster and Exhibit Halls at ASH where we get to see some familiar faces… And there’s a tip of the hat to friends you know in Notes on a New Orleans Field Trip… PLUS: The definitive Dr. Ruben Mesa ASH videos summarizing current findings in MPNs and a brand new expanded List of Patient-Recommended Hematologists….
The Senyak Report Newsletter (TSR) …
Sanofi dumps clinical trial patients without options
After boasting of highly positive results and preparing filings for FDA approval of its JAK2 inhibitor, Sanofi discloses four instances of encephalopathy and abruptly terminates its Phase III trial. Patients, left with no alternatives, are advised to consult their hematologists. Company spokespeople at ASH refuse to meet or comment. (Meantime, the FDA turns down a Freedom of Information Act request for information; appeal pending.) So we investigated and found another 180 million reasons for the drug giant to drop out of the clinical trial. (Story here.)
The TSR Special Report is HERE
Take action: Remember Sanofi. Be a Zebra.
Join the taskforce to petition government and private sponsors of research to guarantee MPN patients on clinical trial the right to be informed of developing risks. Just type “Zebra” in the subject of an E-mail to ourMPNforum@gmail.com
You can read the current issue of the Q … right here!
How I treat MPNs? …Silver, Mesa, Hasselbalch, Harrison
Aspirin, Platelets and Thrombosis… by J.J. Michiels…
Interferon instructions for my patients… H.C. Hasselbalch
The List — 100+ Patient-Recommended Hematologists
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
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Comments on: "December-January 2014" (1)
Thank you Zhen for giving us another outstanding issue of MPNForum Magazine! So much to learn from your trip to The Big Easy!