My husband,Todd Kennedy, was diagnosed with multiple myeloma, a currently incurable blood cancer, the day after Christmas 2017. He was 52 years old at the time, we had one son in college, another in high school, and, as “Dr. Google” informed us, Todd likely had 3 to 5 years to live. Seven years later we credit his continued remission to early access to treatments based on research presented just weeks before his diagnosis at the annual meeting for the American Society of Hematology (ASH).

Before I get into more details about ASH, I will recap the last seven years since diagnosis.We spent the first two years getting Todd to remission while balancing careers and family life as best we could. He endured five months of frontline therapy which included a four-drug treatment regimen, radiation to tumors on his spine and hip, and a stem cell transplant that required both of us to live on the cancer center campus for two weeks. Since then, Todd has been on various maintenance medications including his current treatment of two immunotherapy medications, one he receives monthly as an injection at his cancer center, and the other is a daily dose of 4 pills. He has tolerated the treatments well, and they have done their job of keeping him in remission. In 2020 we had the opportunity to retire early and devote our time and talents to our passion for patient and care partner education, empowerment, and advocacy. Our mission is to spread the word about what we’ve learned and help others achieve greater success on their cancer journeys. We work with non-profits, biopharmaceutical companies, and healthcare professionals on trial design, communication strategies, and outreach. In addition to writing articles, we are active participants on advisory boards, serve on City of Hope’s Speaker Bureau, coach over 100 myeloma patients and care partners, and co-lead monthly myeloma navigation workshops and support groups. We have not let cancer define us, instead we are committed to redefining cancer!

Through our advocacy work we have attended the ASH annual meetings each of the past 4 years– and experienced “goosebump” moments time and time again from the research presented. Highlights from the most recent ASH annual meeting held December 7-10, 2024 in San Diego, include research presented for various stages of myeloma; from the precursor conditions, to newly diagnosed and relapsed/refractory, there was something for everyone. ASH brings together over 30,000 doctors, researchers, and partners from around the world, all focused on advancing care for those with blood cancer and blood diseases. Over 8,500 abstracts were submitted, over 7,000 were accepted, and approximately 1,200 of those were related to multiple myeloma. This is unprecedented as myeloma accounts for less than 10% of all blood cancers.  

I could write about the research and get into the details of trial design and P-values, all of which excites the “myeloma geek” in me, but most people would stop reading; and truly there are two more important points to share from ASH 2024.

First and foremost, this ASH meeting underscored the relevance of having a true myeloma expert on your care team. (A myeloma expert is typically a hematologist-oncologist often at a cancer research center who provides care for many patients with multiple myeloma and is actively engaged in or aware of the most recent  myeloma research.) This expert does not have to be your primary oncologist, you can see them only at routine intervals or pivotal key points, but if you are expecting your general oncologist or even your general hematologist in a community oncology setting to keep up to date with the mountains of myeloma research, you are likely missing out. In the community setting, most oncologists see only one or two new myeloma patients a year. Consulting with a myeloma expert is important not only when you are relapsing and looking for new treatment options, but also if you are in a deep, durable remission. Reducing (and potentially eliminating) steroids during maintenance treatment, as well as curtailing the use of 24-hour urine collections, were two quality-of-life patient (and care partner)-centric research abstracts presented. When myeloma patients were only living a few years, the long-term risks associated with steroid use were irrelevant. Now that patients are living longer, these are issues that must be considered. Additionally, there were studies reported, and on-going research discussed on the optimal testing needed to reduce and even stop continued maintenance therapy for patients who have achieved remission at the deepest levels. The research from ASH 2024 eventually trickles down to community doctors and their patients, but by seeing a myeloma expert at periodic intervals, you could save yourself months, if not years, of unnecessary tests and treatments. True experts are gifted in both the science and art of myeloma care.

The second key takeaway from ASH 2024 was the justifiable hope for patients with multiple myeloma. Over the eleven-year period from 2003 to 2014 there were six treatments approved for myeloma patients.  During the last four years, from 2020 to 2024, there were nine treatments approved, with at least two more expected in 2025. The rate of discovery and approval has accelerated significantly! Most of the new research was not for “me-too” drugs, but options with completely new mechanisms of actions that bring hope for remission to a broader spectrum of people.  We went from session to session where preliminary research was presented for new therapies (BiTEs, CAR-Ts, and CELMoDs), as well as new combinations of approved therapies, and new dosing schedules for therapies that had been avoided due to their harsh side-effects when given at their previous more frequent intervals. It was exciting to hear the myeloma experts' enthusiasm for the options they have available for their patients now, and those coming soon.

There was so much to be ecstatic about at ASH 2024, but the foremost highlight for me and Todd was attending the International Myeloma Working Group (IMWG) breakfast at 6 am on the first day of the conference. The IMWG, in association with the International Myeloma Foundation (IMF), is a prestigious organization of experts/researchers in myeloma from around the world. It currently consists of 295 myeloma experts from 41 countries, and over 200 of them gathered in a standing-room only meeting room at dawn to collaborate on improving outcomes for myeloma patients. The stated mission of this group is to provide scientifically-validated, critically appraised consensus guidelines for the global myeloma community. Seated shoulder-to-shoulder next to experts we have come to know and love from around the world, we truly felt like we were “in the room where it happens!” We have no doubt that the IMWG is transforming myeloma research and care, and we are confident that their work will accelerate the arrival of cures.

We left ASH 2024 exhausted physically and mentally but motivated more than ever in our purpose and mission. Our goal is to educate and empower more patients so that through our combined advocacy, patients everywhere have access to the best treatment options and the best potential outcomes.

Diane Kennedyis a care partner to her husband, Todd, who was diagnosed with multiple myeloma in 2017. She spent her career working in marketing and as a freelance writer before transitioning in 2020 to focus on patient advocacy work. She and Todd have been married for 36 years. They have two adult sons and recently welcomed a daughter-in-love into their family.  

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