Patient Perspective: Navigating Multiple Myeloma Treatment

EP: 1.Introduction and Overview of Multiple Myeloma

EP: 2.Evaluation and Diagnosis of Multiple Myeloma

EP: 3.Role of the Care Partner

EP: 4.Patient Perspective: Diagnosis of Multiple Myeloma

EP: 5.Treatment of Multiple Myeloma

EP: 6.Treatment Initiation and Supportive Care Processes

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EP: 7.Patient Perspective: Navigating Multiple Myeloma Treatment

EP: 8.Adverse Event Management and Treatment Response Assessment

When first confronted with a multiple myeloma diagnosis, patients are often overwhelmed by both the emotional impact and the volume of medical information. In this case, the patients quickly went into “warrior mode,” conducting extensive online research to better understand treatment options and terminology. Initially, they expected a standard 3-drug regimen followed by stem cell transplant and maintenance therapy. However, after meeting with their physician, they learned about a more cutting-edge 4-drug regimen that was still emerging in the field at the time. The treatment included daratumumab (an immunotherapy), lenalidomide (an immunomodulatory pill), bortezomib (a proteasome inhibitor injection), and dexamethasone (a steroid), followed by stem cell transplant and long-term maintenance.

This approach, referred to as a “package,” was based on research that later formed the foundation of the landmark PERSEUS trial. The patients appreciated that their physician was ahead of the curve, offering access to the most advanced therapies years before they became mainstream. Their treatment decisions factored in not only the specifics of the disease—such as risk level and genetic features—but also their family circumstances, personal goals, and the desire to maintain quality of life. This collaborative, personalized planning helped build confidence in the treatment process and contributed to a deep, durable remission lasting more than 7 years.

The patients also emphasized the importance of clear communication and shared decision-making. At a time when medical terminology felt foreign and the emotional weight of an “incurable” diagnosis was heavy, they valued how their care team took the time to explain everything in writing, considered their family responsibilities, and helped restore a sense of control. Rather than being told what to do, they were invited into the decision-making process, which helped ease the anxiety and uncertainty of the early days following diagnosis.