In February 2020, the looming COVID-19 pandemic began to unfold globally.

This prompted the International Myeloma Foundation (IMF) to reformat its in-person Patient and Family Seminar (PFS) which was scheduled to happen in March. We had to adapt to the situation by holding a Zoom meeting instead—the first of what would turn out to be a three-year period of adjusting to the ins and outs of this virtual medium. Fortunately, even with the format change, the webinar was well-attended.

Thankfully, the IMF was able to resume its in-person PFS this year in Boca Raton, Florida, from March 17-18. Being able to meet face-to-face once more was a welcome respite, after going through so many webinars over the course the pandemic. 

At registration, the level of excitement and enthusiasm was high— patients and care partners welcomed old friends, as they took their seats in the ballroom for the opening session.

Day 1: Opening Session

After an introductory welcome, the session began with Dr. James Hoffman (Sylvester Cancer Center—Miami, FL) and I opening a Q&A session. The Sylvester Cancer Center has a regional clinic in the south of Boca, and several patients from the clinic were among the excited participants. Also in attendance were several IMF support groups in Florida as well as patients coming from as far as Canada. 

Surprisingly, there were no significant questions regarding COVID-19, which has been a hot topic for the past three years. Everyone was clearly ready to move on from the pandemic; Dr. Hoffman and I started fielding questions on a variety of topics: the role of autologous stem cell transplants (ASCT), high-risk myeloma, maintenance, as well as new immune therapies such as CAR T cells and bispecific monoclonal antibodies. The Q&A lasted for about an hour and a half with several other topics covered (and would have continued throughout the evening!) 

We explained the differences between Darzalex® (daratumumab; an anti-CD38 monoclonal antibody) and bispecifics. Daratumumab directly targets myeloma cells, while bispecifics have two arms—one attaches to immune T cells (via surface CD3) ; while another one attaches to a B-cell maturation antigen (BCMA) on the surface of the myeloma. Thus, bispecifics bring active T cells close to myeloma cells, to significantly increase the killing cancer cells. 

We were able to explain a key point: since BCMA is different from a CD38 (which is targeted by daratumumab), bispecifics can still work when daratumumab and other therapies have stopped working. 

As the session closed, the audience was abuzz with eager patients and care partners—this was the first time in three years that they were able to reconnect physically with friends and colleagues. It was quite an emotional sight to behold—being able to overcome the challenges of the pandemic and to finally mingle and connect with one another in person.

After the Break Sessions

On Friday, after the break from the first afternoon session, three presentations were well-received: “Taking the Reins of Care” by IMF Nurse Leadership Board Member Beth Faiman; “Disparities in Myeloma” by IMF Chief Medical Officer Dr. Joseph Mikhael, and “Making a Positive Impact” by IMF Associate Director of Distinguished Events Ilana Kenville.

There was tremendous interest in the “shared decision-making process” that was presented by Beth. It is very important to align options and choices with what works for patients and families.

As pointed out by Dr. Mikhael, it is always so distressing to decide on the best option when access to diagnostic testing and/or therapies are limited. Efforts are being made to address multiple and complex issues involved. A key aspect of patient and support group activities is that many want to “give back” and help others who face difficulties in coping with their myeloma diagnosis. Ilana touches on the topic of how we can all make a difference in helping the less fortunate. 

Day 2: Full Day Sessions

IMF President & CEO Yelak Biru started the day with an introduction about the IMF and how we have managed to keep on with our mission: improving the quality of life of myeloma patients while working toward prevention and a cure despite the challenges of the pandemic.

To bring everyone up to speed on information about myeloma for the newly diagnosed, I started the formal sessions with “Myeloma 101: What Patients Need to Know.” Here, I discussed topics such as the importance of early diagnosis, what myeloma tests are needed, treatment options in 2023, and more.

Next, Chief of the Plasma Cell Disorders Division and Professor of Medicine at Atrium Health Levine Cancer Institute Dr. Peter Voorhees did a thorough discussion on Frontline Therapy.

The great news is triplet therapy with VRd (the triple combination of Velcade®/bortezomib, Revlimid®/lenalodimide, and dexamethasone considered as the Standard of Care for newly diagnosed myeloma patients) offers excellent outcomes for a majority of patients. This can be further enhanced by the addition of another agent, such as an anti-CD monoclonal antibody (daratumumab or Sarclisa®/isatuximab-irfc) to create a quadruplet (four-drug regimen). While VRd is the standard of care (SOC), initial remissions become deeper and longer with the four-drug approach. 

After several questions about various options (including the role of ASCT) and before the first break of the day, IMF Vice President of Support Groups Robin Tuohy took the opportunity to do a walk-through of navigating the IMF website to access vital information. This was very helpful for the participants, as they were guided through the various sections of the website with knowledge and information that applies to their unique situations. “Knowledge is power” after all. 

In-Person Update on the iStopMM Project

After the break, participants were in for a treat.  

Dr. Sigurdur Kristinsson from the University of Iceland traveled to Boca to give a full 5-year update on the Black Swan Research Initiative’s® iStopMM (Iceland Screens, Treats, or Prevents Multiple Myeloma) Project. 

He started with a video which summarized the early beginnings of iStopMM in 2016 .

It was truly remarkable to learn the details about how more than 80,000 people in Iceland signed up to see if they have MGUS protein in their blood. This is the largest countrywide randomized study linked to myeloma ever conducted.

There were ~ 4,000 new individuals with MGUS or SMM detected, as well as a few with unrecognized active myeloma. The key point which is emerging from this randomized study (looking at no follow-up versus standard or more intensive diagnostic follow-up) is that intensive approach is achieved without concerns for the patients and with a trend towards improved outcomes. 

It will take some time to know for sure, but it seems that screening will be the way to go. Awareness of various issues, including occurrence of high-risk smoldering multiple myeloma (HR SMM), allows for opportunities to limit disease progression early on — even cure myeloma. 

This is a very exciting prospect, and the audience understood the major potential of this whole new approach to myeloma care. Patients and caregivers really loved the opportunity to hear directly from Dr. Kristinsson.

Approaches to Relapse and New Immune Therapies

After very excited discussions over lunch, we were joined by Dr. Nikhil Munshi (Professor of Medicine at Harvard Medical School and Associate Professor of Medical Oncology at the Dana-Farber Cancer Institute in Boston, MA) to discuss important FDA-approved new therapies that are available as well as ongoing clinical trials.

It was agreed that this is the time in therapy planning  that a second opinion can really help myeloma patients. There are so many options, and it may be that a clinical trial offers the best approach for a relapse management. 

Dr. Munshi focused on the many details about CAR T therapies and the bispecifics presented at the recent ASH meeting in December 2022 and summarized in many post ASH webinar blogs and interviews, among which include a CAR T therapy directed at GPRC5D in relapsed/refractory multiple myeloma patients; and dual-targeting FasTCAR-T T cells for First Line Therapy in transplant-eligible NDHRMM patients, to name a few. 

Discussions centered around difficulties in accessing FDA-approved CAR T-cell therapies: Cilta-cel (Carvykti/ciltacabtagene autoleucel) and Ide-cel (Abecma/idecabtagene vicleucel) as well as concerns complications of infection in BCMA bispecific therapies. 

Fortunately, patient access to CAR T therapies is improving. This is wonderful news and will, hopefully, improve further. Infection problems with bispecifics are linked to the need for ongoing therapy, which increases the likelihood of suppressing the immune system and therefore, the possibility of infection (such as pneumonia). 

Use of intravenous immunoglobulin (IVIG) infusion is recommended as well as high-level of awareness to allow early intervention for any infection episode.

In Closing

Excitement on finally meeting in person was still evident at the end of the day. There were breakout sessions where final questions were answered. Initiated by Robin, the seminar also became an opportunity for care partners to meet. 

All in all, it was a very successful Patient and Family Seminar. The attendees were a little tired but overall satisfied, even thrilled in physically meeting again to learn from one another and to support each other. Everyone is looking forward to a broad return to the in-person world!

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 Chairman Emeritus and Chief Scientific Officer of the IMF. Dr. Durie is also the Chairman of the International Myeloma Working Group (IMWG)—a consortium of more than 250 myeloma experts from around the world—and leads the IMF’s Black Swan Research Initiative® (BSRI). 


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