What I Wish I Knew Sooner: Myeloma Care Partner Advice

In reflecting on their journeys, multiple myeloma care partners share crucial insights they wish they’d known sooner. A key lesson is that myeloma treatment is rarely a linear path; a change in plan is not a failure but can lead to a better, more effective therapy. They emphasize that open communication with the patient and the medical team is critical, including advocating during appointments with prepared questions. Building a full support team—including social workers and financial counselors at larger centers—is essential for managing non-medical burdens. Care partners also highlight the need for practical advice on managing treatment side effects, suggesting tools like symptom journals. Most importantly, they stress a shift in mindset: while multiple myeloma is a lifelong condition, it does not have to define life. Focusing on maximizing quality of life and understanding that patients can live well for a long time provides profound hope and direction for new care partners and patients.