Professor of Medicine, Hematologist/Oncologist, and Honoree MD at the University of Brussels, Dr. Brian G.M. Durie is a co-founder of the IMF and a member of the IMF Board of Directors.
For the past 3 years, there has been a pent-up demand to return to the normality of in-person meetings and activities.
There was great excitement leading up to and during the recent Patient and Family Seminar, which was held in Los Angeles from August 18-19. Despite the impending inclement weather brought about by Hurricane Hilary over that weekend, there was a palpable energy in the room from patients, families, friends, and care partners who were in attendance.
The opportunity to meet old friends, new patients, and perhaps chat with one of the presenting experts was truly welcomed.
For this long-awaited event, 209 people attended in person; around 700 registered for online streaming—with 202 participating virtually on Friday and 176 joining the Saturday session. Some of the virtual participants even decided to join the lively discussions in person on Saturday.
The 2-day Patient and Family Seminar in Los Angeles hosted an outstanding panel of specialists, including:
IMF President & CEO Yelak Biru made the welcome announcements for both days, and gave an IMF presentation on Saturday, which highlighted the vision of the IMF, moving forward.
The Ask-The-Experts Open Forum Discussion with Dr. Vescio and yours truly turned into a very lively session—setting the tone for the whole meeting with multiple, highly informed and important questions from the attendees.
It was quite difficult to do justice to all these questions and the many, many, more that were asked throughout the seminar interwoven between the excellent and greatly appreciated presentations from the panel of experts.
To give you an overview, here are some of the highlights of the Patient and Family Seminar:
Without question, a big focus of attention was the new immune therapies— in particular, CAR T therapies and bispecific monoclonal antibodies. The high level of efficacy with response in the relapsed/refractory multiple myeloma (RRMM) setting being from ~ 70-close to 100% is quite remarkable. For patients seeking major options after multiple prior therapies, these immune treatments offer the probability of significant benefit.
The two FDA-approved CAR T therapies, ciltacabtagene autoleucel or cilta-cel (Carvykti™) and idecabtagene vicleucel or ide-cel (Abecma®) both offer decisive benefits with a single infusion of engineered patient T cells targeting B-cell maturation antigen (BCMA) on the surface of myeloma cells.
However, access to these CAR T therapies has been a problem and has raised several questions. Fortunately, access has improved in recent months and problems on the quality of T cells product quality are being addressed, with solutions continuing to evolve.
The bottom line is that more and more patients are gaining access to CAR T products. As emphasized by some attendees, who are experiencing long remissions while being off all anti-myeloma therapy, CAR T therapy has been providing them with huge benefits, after going through years of active treatment.
Potential side effects, such as Cytokine Release Syndrome (CRS) and Immune Effector Cell-Associated Neurotoxicity Syndrome (ICANS), were an important source of concern and led to many questions and much discussion among the experts.
The key point here is that it is necessary to discuss these things ahead of time with your doctor, as constantly recommended by IMF Founder & Director of Global Patient Initiatives Susie Novis Durie. Get a second opinion if you do not get the answers you need.
With two recent FDA approvals there are now three bispecific antibody products available:
The discussion focused on the fact that these products are “off-the-shelf” and are thus, immediately available in the clinic. These treatments are ongoing every 1-2 weeks by subcutaneous injection.
Again, there are side effects, but responses have been impressive— in the 70% range. It is especially exciting to have talquetamab available and active in patients who have received prior ant-BCMA therapies.
Concern was raised about possible infections, like pneumonia, which can clearly be problematic. Much discussion centered around preventative type treatments, including the use of gamma globulin shots along with antivirals and antibiotics.
A key point was the length of required treatment. Although FDA-approved regimens are open-ended (continuous unless relapse occurs), many experts are considering using reduced dosage/frequency schedules or even stopping therapy if excellent remission has been achieved. It was particularly important for patients to be aware of these active, ongoing discussions.
One recent trial, RedirecTT-1, caught people’s attention. This trial combines teclistamab and talquetamab and showed very promising results, especially in patients with extramedullary disease (EMD)— a disease in soft tissues outside the bone marrow which occurs in patients with more resistant relapsing myeloma.
A response rate of 85.75% occurred in these patients which extends the significant likelihood of benefit in this situation. Again, something to be discussed with your doctor if you are in that situation or in a similar situation with aggressive relapsing myeloma.
It was truly a great pleasure to have a visiting guest from Singapore. Dr. Daryl Tan is a key investigator in the Asian Myeloma Network (AMN)—a research division of the IMF.
In his lecture, Dr. Tan described the broad range of activities occurring within the AMN, including clinical trials, patient support groups, and educational Masterclass programs, to name a few.
In addition, there are active research projects stemming from Working Committee recommendations as they occur in the International Myeloma Working Group (IMWG). An important new project is the Virtual Tissue Bank, which has already been set up at the Singapore University Cancer Institute.
Dr. Tan presented a very helpful analysis of support group activities in Asia (which now includes 10 countries). He illustrated the differences between groups and strategies which lead to the creation of the most successful groups. The IMF provides both guidance and educational materials to the AMN as best as possible.
Patients clearly made note of the status of new and emerging technologies:
Beyond the discussion of specific concerns and questions, the ability to reconnect in this supportive myeloma community setting was definitely a big hit.
As one attendee noted, the small things made a difference like availability of pillows and water in glass bottles. The compassionate attention from experts and bonding with those in the myeloma community were key outcomes.
In-person PFS activities are alive and well, and will continue to support patients, families, friends and care partners.
IMF Vice President of Support Groups Robin Tuohy provided excellent guidance on how to navigate the IMF website to follow through with questions on discussions from the seminar, as well as for day-to-day use of patients and care partners.
In addition, IMF Director of Development & Events Miles for Myeloma Producer Ilana Kenville presented on how patients can have a positive impact on the myeloma community, which many are keen to do.
In case you missed it, you can still watch the video replays of PFS-LA on the IMF website. You may also download the presentation slides.
Professor of Medicine, Hematologist/Oncologist, and Honoree MD at the University of Brussels, Dr. Brian G.M. Durie is a co-founder of the IMF and a member of the IMF Board of Directors.