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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 Founder, Chairman of the Board and Chief Scientific Officer Dr. Brian G.M. Durie, who did presentations on Next Generation Testing and Decision Making; Myeloma 101: What Myeloma Patients Need to Know; answered questions on Ask-The-Experts: An Open Forum Discussion with Brian Durie, MD; and a Breakout Session on Diagnosis and Treatment
  • IMF President & CEO Yelak Biru, MSc., who did the Welcome Announcements on Friday, and the Welcome & IMF Presentation on Saturday
  • Dr. Robert Vescio (Cedars-Sinai Samuel Oschin Center—Los Angeles, CA), who joined Dr. Durie in the Ask-The-Experts Open Forum Discussion 
  • IMF Nurse Leadership Board Member Donna Catamero, ANP-BC, OCN, CCRC (Icahn School of Medicine at Mount Sinai—New York, NY), who did a presentation on Taking the Reins of Your Multiple Myeloma Care, and a Breakout Session on Managing Myeloma Symptoms and Side Effects
  • Dr. Rafat Abonour (University of Indiana School of Medicine), who did a presentation on Frontline Therapy and a Breakout Session on Diagnosis and Treatment with Dr. Durie
  • Dr. Daryl Tan (Mount Elizabeth Novena Hospital—Singapore) who did a presentation on Patient Support Group Programs in Asia
  • Dr. Noopur Raje (Center for Multiple Myeloma, Massachusetts General Hospital—Boston, MA) who did a presentation on Approaches to Relapse Therapy and a Breakout Session on Diagnosis and Treatment with Dr. Durie
  • Dr. Ajai Chari (University of California San Francisco—San Francisco, CA) who did a presentation on Immune Therapy Options and a Breakout Session on Diagnosis and Treatment with Dr. Durie 
  • IMF Vice President of Support Groups Robin Tuohy, who did the Introduction and Housekeeping, as well as a Breakout Session on Care Partners
  • IMF Director of Development & Events Miles for Myeloma Producer Ilana Kenville, who did a presentation on How You Can Make a Positive Impact in Our Myeloma Community

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:




 

1. New Immune Therapies

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.


 

CAR T Therapies

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. 




Bispecific Therapies


With two recent FDA approvals there are now three bispecific antibody products available: 

  • teclistamab (Tecvayli®) - Anti BCMA / CD3

  • elranatamab (Elrexfio™) - Anti BCMA / CD3

  • talquetamab (Talvey™) - Anti GPRC5D / CD3 : first non BCMA bispecific



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.


 

2.  Special Guest Dr. Daryl Tan Talks About Patient Support Group Programs in Asia 

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.



 

3. Next Generation Technology

Patients clearly made note of the status of new and emerging technologies:

 

  • Mass Spectrometry was presented and discussed. This is a new technique for measuring the myeloma protein level  in the very low-level range.  The commercial method just approved in Europe is called EXENT and will likely be approved  in the US by early next year. Right now, samples can be sent to the Mayo Clinic in Rochester, MN for testing. This new testing method provides several advantages including being fully automated vs serum protein electrophoresis (SPEP) and serum immunofixation tests (IFE) which require expert technician/pathologist support to be performed and interpreted. Mass Spectrometry gives results when other tests are negative (like non-secretory disease situations) and is a readily available blood test for MRD type monitoring. For MRD assessment, an even more sensitive mass spectrometry method (Q-TOF) is becoming available and can offer very sensitive monitoring in this very low range. The availability of mass spectrometry can be a big advantage for patients.
  • Next Generation Flow (NGF) is the recognized approach, along with Next Generation Sequencing (NGS) for MRD testing and monitoring. The standard approach is bone marrow testing. However, a new approach can provide more sensitive testing (down to the 10-8 level) by using a blood sample. The bone marrow technique will most likely be approved both in Europe and the US very soon. It is very encouraging to have these technologies moving forward toward broad availability.



 

The Bottom Line

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.
 


Image of Dr. Brian G.M. DurieProfessor 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.

 

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