December 17, 2012, Vol. 3. No. 4
Game-changing JAK inhibitor news… A new trial for Interferon… Video interview with Dr. Richard Silver… Full audio presentation of the surprising CYT387 results … Sanofi lays claim to fibrosis reduction… Gould on clinical trial… Goldstein on another ash.
Getting to ASH Atlanta isn’t far from my North Carolina home in the Appalachian mountains. Sherman and his armies were able to march from neighboring South Carolina and burn the city down in a matter of days. My objectives were more peaceful. I just needed to get down to Atlanta for the 54th Annual Meeting of the American Society of Hematology and scout out MPN developments. At 5AM on a dark and deeply fog-draped morning last week, I drove down Interstate-85 to interview, photograph, listen…and by the time it was over I could say with General Sherman,”Glory hallelujah..” (More, here…)
JAK — A proliferation of uninhibited promise. There’s a surprising JAK inhibitor update from ASH. Once thought to be our magic MPN bullet — then briefly tossed aside on the scrapheap of lost expectations — the JAK inhibitors have risen again with a vengeance! Backed by a huge pot of cash. New evidence confirms they can improve quality of life, rapidly shrink the spleen, most likely extend longevity, reduce or eliminate many constitutional effects and, in some configurations, reduce or eliminate the need for blood transfusion. (More here…)
The Photo Gallery (Enter here)
Gallery of Scientific Posters & Slides (Enter here)
Silver on Interferon. In these brief video interviews at ASH, the MPN world’s pre-eminent physician, researcher and professor holds forth on a favorite topic — the Interferons — and extends an invitation to his new clinical trial. (See it here)
On CYT387 Trial…clinical trial from the patient’s perspective by Harvey Gould (join him here)
A different kind of ash…Just in time for a New Year’s Resolution, Michael Goldstein talks about a fresh start. (It’s here.)
Season’s Greeting to All from all of us at MPNforum Magazine. Have a safe and happy holiday. See you here January 15, 2013.
Contact and Fatigue Project stories: ourMPNforum@gmail.com Questions for the MPNclinic Panel: MPNclinic@gmail.com
Comments on: "Special Report: ASH-2012" (14)
Has anyone heard anything about CYT getting FDA clearance soon and if it does reduce marrow fibrosis?
I believe YM Bioscience (Gilead) is planning to report results of its Phase III controlled trial at ASCO in Chicago at the end of May, 2013. The FDA approval process would presumably follow. The only claim I actually heard for reversal of marrow fibrosis was made, as reported in the article, by Sanofi. Dr. Pardanani did say there were not many BMBs taken during their trials to avoid unnecessary patient discomfort so I doubt there would be a claim for fibrosis reversal made for CYT387 based on the Phase I/II trials.
Zhen, once again I am bowled over by your reporting and your dedication….1000 thanks. I am so glad that research is ongoing and successful as it is. I am an ET patient but know that all is not written in stone for me and my disorder. I am so happy for those that suffer with MF that there is hope on the horizon…for them and all of us that belong to this community.
So much information, so important to take the time to take it all in. Thank you, Zhen et al. Peace from our house to yours.
Season’s greeting to Zhen and the team. I hope that you have a well deserved rest. Finding out about this forum has been a highlight of my life in 2012. It is an important resource giving hope for the future of further knowledge in rare haematological diseases.
Hi Zhen, after a busy few days with interstate family guests staying over, I finally got a chance to sit down at the computer and start reading your special ASH MPNforum reports. Thank you so much for the many hours of time, travel and effect that you obviously put into bringing us this special edition and for sharing what you learnt with us. Many thanks, well done and happy holidays! Nathalie Cook
I have been working my way through all the information on this page and after three separate visits…. do my eyes deceive me or are those snowflakes falling down the page from the top? Thanks Zhen.
Would love to know more, all my options have dried up. Was able to get copay assistance thru LLS. They no longer have funds for MPN, All other org. say they only help with Jakafi and the Peg manufactuter will only provide it for Hep C patients, since we use it off label.(Its not FDA approved for MPN) How can I get this info?
Perhaps you could qualify for the Interferon trial Dr. Silver is opening (see story). You can contact his assistant, Maria Wright, for information: Good luck.
One more comment. We just posted a new video with Dr. Ruben Mesa where he gives a pretty solid analysis of what he thought was significant at ASH. It’s right on the home page at http://www.patientpower.info. There’s also a story just below it with Betty Brawley who is doing well (and eating too much!) now on Ruxolitinib. Let me know what you think. Coming soon is also an interview with Moshe Talpaz on the Sanofi-Aventis drug in trials. Let me know what you think.
Thank you Zhen, so much work and dedication , to bring us such encouragement!!!. Inf/Peg has provided me with Life for 10 yrs. I would have been transfusion dependent since 2002 (HGB) 7.9. For me personally, transfusions were not an option. Using EPO injections (Procrit) and Inf/Peg, I have had a good quality of life and best of all, stayed alive! Recently all sources of assistance with co pays for Peg. have dried up, The cost to me would put it out of reach. I have cut my dose and stored enough to last me about 1 more year. Now to read the results on the Jak drugs is so very hopeful. When I reach a need, probably in 6-9 mons, It looks like there will be some good options. You’ve made my day. RA
Zhen I have been eagerly awaiting reports from ASH and I thank you for the efforts you made to get this edition of the MPNforum up and out so quickly. Your staff of you, yourself and thee have burnt the candle at both ends to bring us news. I can’t wait for more.
First let me tip my hat to Zhen on an outstanding job here and incredible dedication to the MPN Community! I met Zhen at ASH where I was covering news for my company, PatientPower.info. I have a special interest since I was treated in 2000 for chronic lymphocytic leukemia and remain in remission, and then in 2011 at ASH found out I have PMF. I’ve been on Jakafi for about 8 weeks now and doing well – went running today. When Zhen was conducting interviews at ASH, so was I: with Mesa, Cervantes and Verstovsek. The last two are my doctors, one in Barcelona where I live now and one in Houston. Like Zhen, I came away very encouraged. Please send me suggestions for the MPN Center on patientpower.info/mpn and you can bet I will participate here. I am a big believer in “patient power” for us to team with researchers and industry to make things happen faster. Best Wishes to all! Andrew Schorr
Ruth Anne I was told by Dr. Silver there are ways to get PEG that can avoid the higher costs