R/R Multiple Myeloma: Patient Perspectives and Clinical Guidance Upon Diagnosis
Panelists discuss how patients with relapsed/refractory (R/R) multiple myeloma experience the challenging process of confirming disease recurrence through bone marrow biopsies and PET scans, often struggling with difficult treatment regimens like immunotherapy and daily lenalidomide (Revlimid) that cause severe illness, leading patients to advocate for themselves by researching alternative therapies like chimeric antigen receptor (CAR) T-cell therapy through educational materials and videos, ultimately seeking second-line treatments that offer the appeal of “one and done” therapy with less ongoing chemotherapy compared with traditional lifelong treatment approaches.
Upon relapse confirmation through bone marrow biopsy showing 15% abnormal plasma cells and PET scan revealing an affected fourth rib, the patient was promptly started on treatment before severe symptoms developed. The relapse treatment regimen included daratumumab (Darzalex), an immunotherapy, along with lenalidomide and dexamethasone. However, the patient experienced significant illness and adverse effects from this combination, particularly from the daily lenalidomide, which made her very sick and indicated that alternative treatment approaches were needed.
The patient became her own advocate by actively researching treatment options, discovering CAR T therapy through educational materials encountered during routine blood draws. After reading about CAR T in a multiple myeloma magazine, she encountered a video featuring her physician discussing CAR T-cell therapy, which she interpreted as a sign that this treatment might be appropriate for her situation. This led her to contact the medical team’s office, where she received prompt and kind attention, ultimately being evaluated and deemed a suitable candidate for CAR T therapy.
The primary appeal of CAR T therapy for the patient was its “one and done” approach, offering the possibility of effective treatment without requiring lifelong daily chemotherapy regimens. This prospect was particularly attractive given her negative experience with continuous chemotherapy and the associated adverse effects. The patient expressed gratitude for the medical team’s comprehensive explanations and ability to address her questions thoroughly, noting that their clear communication style helped her understand the treatment process without feeling overwhelmed. She appreciated having the treatment pathway clearly outlined for her, acknowledging that she would have felt lost trying to navigate the complex treatment decisions without expert guidance and support from the multidisciplinary care team.
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