The IMF Returns to In-Person Patient and Family Seminars in Boca Raton

The IMF Friends old and new celebrate reconnecting face-to-face after three years of online educational meetings 

By Dr. Brian G.M. Durie, IMF Chairman & Chief Scientific Officer 

In February 2020, as the COVID-19 pandemic began to unfold, the IMF was prompted to reformat its signature Patient & Family Seminar (PFS) program by holding online meetings instead. This would turn out to be a three-year period of adjustment to the virtual medium. The IMF’s educational webinars were highly successful and well-attended. 

In March 2023, the IMF was able to resume its in-person PFS program with a meeting in Boca Raton, FL. After so many webinars over the course of the pandemic, being face-to-face once again brought much excitement. It was an emotional sight to behold, old friends finally able to reconnect in person. Myeloma patients from the area were joined by members of several IMF-affiliated Florida support groups, as well as patients who traveled from as far as Canada. 

Day 1 

After a warm welcome from the IMF, the first educational session by Dr. James Hoffman (Sylvester Comprehensive Cancer Center, Miami, FL) led into a Q&A session co-led by the two of us. Surprisingly, there were no significant questions regarding COVID-19. Dr. Hoffman and I fielded questions about the role of autologous stem cell transplants, high-risk myeloma, maintenance therapy, CAR T-cell therapy, 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!). 

After a break that followed the first session, three well-received presentations took place: “Taking the Reins of Care” by Beth Faiman of the IMF Nurse Leadership Board, “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. Beth discussed the “shared decision-making process,” which was met with tremendous interest from the attendees, as it is so important to align treatment options with what works for patients and families. Dr. Mikhael pointed out how distressing it is when access to testing and treatment are limited. Efforts are being made to address the complex issues involved. Ilana touched upon the activities led by patients and families who want to “give back” and help others, and how we can all make a difference by helping the less fortunate. 

Day 2 

IMF President & CEO Yelak Biru opened the day’s program with a presentation about the IMF and our mission to improve the quality of life of myeloma patients while working toward prevention and a cure. Then, I began the “Myeloma 101: What Patients Need to Know” session by bringing everyone up-to-speed on newly diagnosed myeloma, including the importance of early diagnosis, which tests are needed, which treatment options are available in 2023, and more. 

Dr. Peter Voorhees (Atrium Health Levine Cancer Institute, Charlotte, NC) presented a thorough discussion of frontline therapy. The “triplet” (3-drug) regimen with Velcade® (bortezomib) + Revlimid® (lenalidomide) + dexamethasone (VRd) is considered as the standard-of-care (SOC) for newly diagnosed myeloma, and it offers excellent outcomes for most patients. VRd can be further enhanced by the addition of Darzalex® (daratumumab) or Sarclisa® (isatuximab-irfc) to create a “quadruplet” (4-drug) regimen.  

Before the first break of the day, IMF Vice President, Support Groups Robin Tuohy demonstrated how to navigate the IMF website to access vital information. After the break, participants were in for a wonderful surprise. 

Dr. Sigurður Kristinsson (University of Iceland, Reykjavík) had traveled to Boca Raton to give the 5-year update on the Black Swan Research Initiative® (BSRI®) iStopMM (Iceland Screens, Treats, or Prevents Multiple Myeloma) research project in person, and a video was shown about the beginnings of iStopMM in 2016. More than 80,000 people in Iceland signed up to be screened for M-protein in the blood and to take part in the largest population-based study ever conducted. Approximately 4,000 individuals were detected to have monoclonal gammopathy of undetermined significance (MGUS) or smoldering multiple myeloma (SMM), as well as a few with active myeloma. While it will take some time to know for certain, it seems that screening will be a way to limit disease progression early on – and perhaps even cure myeloma. The audience understood the significance of this approach to myeloma care, and really loved hearing about it directly from Dr. Kristinsson. 

Dr. Nikhil Munshi (Harvard Medical School and Dana-Farber Cancer Institute, Boston, MA) discussed new FDA-approved therapies as well as ongoing clinical trials. He explained data on CAR T-cell therapies and bisp ecific antibodies. Fortunately, access to CAR T therapies is improving. An expert opinion can help myeloma patients decide if a clinical trial offers their best option for relapse management. 

In closing, the 2023 IMF Patient & Family Seminar in Boca Raton was a very successful event, and the excitement about meeting in person was still evident at the end of the meeting. We are all looking forward to a broad return to the in-person program of IMF Patient & Family Seminars! 

(This article was published in the 2023 Spring Edition of the IMF's quarterly publication, Myeloma Today. Read the full publication here.)