Global Myeloma Voices Come Together to Drive Research and Improve Lives of Patients
June 29, 2017
Global Myeloma Voices Come Together to Drive Research and Improve Lives of PatientsWRITTEN BY: Brian GM Durie MD
This past week was very busy and important for the global myeloma community, which is increasingly coming together with a single voice for myeloma research and patient care. In Madrid, Spain, on the eve of the 2017 Congress of the European Hematology Association, the IMF provided platforms for many of these global research voices at the 2017 International Myeloma Working Group® (IMWG) Summit, as well as during the regular research update meeting of the IMF Black Swan Research Initiative® investigators team.
In addition, the voices of myeloma patients were heard at a meeting of the Global Myeloma Action Network® (GMAN), a group of myeloma patient organizations from around the world whose aim is to support patients’ needs. The GMAN Summit hosted 45 attendees from 25 countries representing 5 continents June 17-19. Experts on myeloma (Prof. Jean-Luc Harousseau and Dr. Rafat Abonour) and global advocacy (Dr. Durhane Wong-Rieger) shared research and strategic insights. Member organizations from Brazil, Canada, Colombia, France, and Korea described their challenges and accomplishments. And the 2016 Susie Novis Durie Grant recipients from Armenia, Croatia, and Paraguay reported on their progress. This year’s grant recipients are from Argentina, Austria, and Romania.
Black Swan Research Initiative investigators meeting
The IMF’s Black Swan Research Initiative team held its regular research update meeting on June 19. Our signature research project has grown quite intense, with more than 30 projects ongoing or completed. Here are a few:
Myeloma interrupted: The iStopMM® project, launched in October 2016 in Iceland to prevent MGUS (monoclonal gammopathy of undetermined significance) from developing into full-blown disease. About 80,000 Icelanders have signed up to participate in this blood screening, and approximately 1,000 new cases of MGUS have been diagnosed. The special clinic for bone marrow and other testing has opened. The Icelanders actually want to have a bone marrow test to contribute to the understanding of the disease. Congratulations to Dr. Sigurdur Kristinsson and his team for spectacular progress!
Next-generation myeloma testing: Dr. Alberto Orfao and Dr. Bruno Paiva updated the Black Swan investigators team on the progress made by Spain-based researchers. The newly developed and very sensitive NGF (next-generation flow) test to detect one in one million plasma cells in the bone marrow is now being used to test for myeloma cells in the blood with great results. All patients with active myeloma as well as SMM (smoldering multiple myeloma) have myeloma cells in the blood! This is really a whole new understanding of the disease. Myeloma becomes “multiple” because cells move to new spots in the bone marrow and elsewhere. Even MGUS patients can have some cells in the blood.
Studying these blood cells is the next phase of Black Swan research: Why are they there? How many are there? Are they sensitive or resistant to treatment? What is happening with the immune system? Of course, for patients, a key question is: Can blood-testing replace bone marrow testing? And a preliminary answer is, maybe, yes! So, good news. Much more to come on this.
Latest in imaging: Dr. Jens Hillengass and Dr. Evangelos Terpos updated the Black Swan team on imaging research. WBLD (whole-body low-dose) CT is better than regular skeletal survey, detecting lesions in approximately 20 percent of patients when x-rays are negative. A new project will capture imaging results by computer analysis with an electronic report. Also, a special type of MRI (magnetic resonance imaging) is being compared to PET/CT (positron emission tomography/computed tomography).
Cure trials: Dr. María-Victoria Mateos updated the team on the CESAR trial, which is now fully accrued! This is a study of KRd (Kyprolis + Revlimid + dexamethasone) + ASCT (autologous stem cell transplant) in HR SMM (high-risk smoldering multiple myeloma), which has been well tolerated with a 100 percent response rate! Much more to come on that at the December 2017 annual meeting of the American Society of Hematology (ASH), I am sure. In addition, Dr. Shaji Kumar announced that the ASCENT trial in the US is about to begin (KRd + Daratumumab +/- ASCT in HR SMM). There is tremendous excitement about finally starting this important study to compare with the CESAR trial results.
Much more was reported at the Black Swan Research meeting, but this gives a flavor of the most exciting updates.
2017 International Myeloma Working Group Summit
The 8th Annual IMWG Summit in Madrid was a big success, with key myeloma opinion leaders (KOLs) participating, discussing, and reviewing the latest research. The format was enhanced to keep presentations short, with ample time for discussion. More than 100 members of the myeloma community were in the audience, including representatives of the pharmaceutical industry and myeloma patients. The immediate feedback was that the major topics and questions facing the myeloma community were covered in a fashion which engaged and stimulated new ideas and opened a very active discussion.
Frontline setting: Current and future options which considered both drug access and patient-risk status were reviewed. Dr. Philippe Moreau showed sobering global maps illustrating the very limited availability of new agents outside the US. The cost implications of new four- or even five-drug combinations drew concern.
Role of ASCT: The simple conclusion of this discussion was that ASCT (autologous stem cell transplant) clearly adds both PFS (progression-free survival) and survival benefit. The open question is how to optimally integrate the use in the frontline and/or early relapsed situations. It was agreed there is no need to keep reevaluating the value of ASCT as each new agent comes along.
Rising treatment costs: Dr. Jean-Luc Harousseau had the unenviable task of discussing concerns about the progressive increases in the costs of myeloma care, including drug costs. The complexities here were very clear—the solutions much less so! Involvement of stakeholders is key. So, too, are recognition of regional differences, local situations, new expensive therapies versus drugs coming off patent. This year we hope to truly start to find solutions in this very complex time for healthcare delivery.
High-risk myeloma: Dr. Saad Usmani provided a comprehensive overview of high-risk myeloma, which was an excellent update for everyone. This is another area where much work remains to be done to provide better therapy for patients with high-risk disease.
Too many trials? Dr. Philippe Moreau, Dr. Vincent Rajkumar, and Dr. Wee Joo Chng gave a comprehensive update of global trials planned or ongoing in 2017. There are a staggering number of trials in process, both in the frontline and relapsed settings—a bit of a shock for both investigators and industry representatives. It made us aware that we need to look more closely to avoid duplication and to prioritize trials which are truly practice-changing.
The meeting wrapped up with a discussion of possible additional topics for next year plus considerable—and gratifying—feedback that #IMWG17 was a great success! Thanks to all who worked so hard to make this a meeting to be remembered.
Be sure to register here for the IMF webinar, "Myeloma Updates 2017: Best of ASCO/EHA/IMWG Webinar," followed by a 30-minute Q&A session, on Thursday, July 13, 4:00 pm to 5:15 pm PDT. Dr. Brian G.M. Durie will explain the new and exciting current trends in myeloma treatment and research with this update from the three major medical meetings held in June 2017 – the American Society of Clinical Oncology (ASCO), the European Hematology Association (EHA), and the International Myeloma Working Group Summit (IMWG).