Soon I’ll be off to Atlanta, the site of this year’s American Society of Hematology (ASH) conference. ASH is all about blood cancers (leukemia, lymphoma, multiple myeloma), and there are nearly 700 oral presentations and posters on myeloma alone. I’m so grateful to the International Myeloma Foundation (IMF) and their sponsors for sending me, and I look forward to blogging at night about each day’s highlights. Finally, I’ll create a multi-page summary of the most interesting takeaways from my perspective and share this with my support group, post it on our website, and distribute to anyone else who requests it.
As background, I attended my first ASH meeting 12 years ago and found it a bit like being diagnosed with myeloma (nearly 23 years ago). The terminology and amount of information was overwhelming, not surprising though, since the audience consists 20,000 researchers and oncologists, learning the latest updates for blood cancers, including myeloma (MM). I’ve learned to prepare a few weeks ahead of time, creating my personal agenda of talks I want to attend. These presentations will typically be on clinical trial results rather than on biological lab studies because these have more immediate value to patients undergoing treatment or to the newly diagnosed.
My agenda is nearly complete and although ASH officially runs from Sat, December 9 to Tuesday, December 12, I’ll be arriving Thursday, December 7 and plan to attend the BMT CTN (Blood & Marrow Transplant Clinical Trials Network) Myeloma Intergroup meeting that evening. This group focuses on developing and supporting clinical trials that involve transplants and has a 3.5-hour agenda to discuss various trials, concepts, and supporting diagnostics such as MRD (Minimal Residual Disease), Immune Profiling, and Imaging. Since oncologists are already speaking and attending ASH, BMT CTN and groups like SWOG will schedule meetings during the same timeframe. I appreciate learning about new trials and offering a patient’s perspectives at these meeting.
Then Friday, December 8 is designated as Symposium day, with Symposiums scheduled for 3–4 hrs in the morning, afternoon, and evening. For example, 1000 attendees (researchers, clinicians, and pharma) will be at the IMF Symposium Friday afternoon led by a panel of myeloma experts discussing various MM issues. Even though answers in these sessions cannot include information yet-to-be-released at ASH, it’s always fascinating to see how MM experts have different opinions/recommendations to handle various patient case studies or how they pose questions for which there’s no definite answer yet . . . welcome to the world of myeloma.
Finally, ASH begins Sat and runs through Tue morning. My agenda consist of showing the full names of Oral and Posters being presented at ASH. Before putting it together, my expectations were to learn more about CAR-T therapies, in particular targeting the antigen BCMA as well as more about Daratumumab (Darzalex) and Ixazomib (Ninlaro), both FDA approved Nov 2015. And there are new drugs in trials such as Venetoclax and Selinexor as well as a monoclonal antibody against BCMA identified as GSK2857916 (rolls right of the tongue, right?). And all of this for NDMM (Newly Diagnosed), RRMM (Relapsed-Refractory), MGUS and SMM pts as well as continue to answer questions about SCT and maintenance treatments.
Just to confirm what I thought I’d be learning more about, I did an “unscientific” word count and examed how often these terms appear in my agenda. Here are the results:
BCMA: 46 CAR-T: 20 NDMM: 20 RRMM: 54 SMM: 21 MGUS: 19
Daratumumab: 56 Ixazomib: 25 Selinexor: 13 Venetoclax: 9
Maintenance: 73 SCT: 20 MRD: 69
Each day both Oral and Poster presentations provide Topic (Abstract) details of Background, Method, Patient Demographics (could be Mouse Models), Results of Responses & Adverse Side Effects, and Conclusions. Yes, there will be lots to learn.
Along with several other patients/support group leaders the IMF brings to ASH, I look forward to sharing our experiences together via blogging and tweeting. We hope to keep you well informed from our individual patient perspectives. Of course, you’ll have other vehicles to learn about ASH in the weeks that follow, including webinars, telephone conferences, seminars and more. Maybe your own oncologist will be at ASH. Take advantage of these resources and become your own best patient advocate.
