A Myeloma Diagnosis: The Emotional and Physical Reality

This Myeloma Awareness Month, we are honored to present Kenneth Casler's "Patient Voice" series. Throughout March, Ken will share his unique perspective on his personal journey with multiple myeloma, his insights on myeloma research, and the crucial role of patient voices in advancing care.

A multiple myeloma diagnosis is life-changing. One moment, you’re navigating the routine of daily life; the next, you’re plunged into a world of uncertainty, medical jargon, and fear. It’s an overwhelming experience that shakes the very foundation of your reality.

The Emotional Impact of Diagnosis

You’ve been struggling with unexplained symptoms. Fatigue, bone pain, maybe some recurring infections. Your doctor orders tests, but the results are unclear. You’re referred to a specialist. Anxiety builds as the waiting drags on. Then, the call comes.

The specialist stays positive, but you sense the concern in their voice. When they say the word cancer, your mind races. Panic sets in. Myeloma? You’ve never heard of it. But you know cancer is serious. Your thoughts spiral—what does this mean for your future? Your family? Your job?

The moment of diagnosis is filled with emotional turmoil. Two words—cancer and treatment—ignite a flood of fears. Will the treatment be unbearable? Will life ever feel normal again?

This is the reality for many myeloma patients, an initial reaction of shock, grief, and fear. It’s a perfectly natural response, hardwired into our survival instincts. The threat feels immediate, overwhelming, and life-altering.

Living with an Incurable Disease

Thanks to advances in treatment, people with myeloma are living longer than ever. But unlike some cancers that can be “cured,” myeloma remains a chronic condition. This means ongoing treatments, regular monitoring, and lifelong uncertainty.

Many patients cycle through multiple lines of therapy—proteasome inhibitors, immunomodulatory drugs, monoclonal antibodies, and in some cases, CAR T-cell therapy or stem cell transplants. Each treatment brings its own set of side effects, ranging from manageable to debilitating. Fatigue, infections, nausea, neuropathy, weight loss—the list goes on. Even when the disease is under control, the burden of treatment remains.

The Role of Perception in Patient Experience

From the moment of diagnosis, your mind starts to shape your reality. Stressful threats, like cancer, alter how we perceive the world. Many patients immediately think, “I’m going to die,” even though survival rates have improved. Instead of believing, “Treatment will help me get better,” the fear of unbearable side effects dominates.

This emotional response is normal, but it can also evolve over time. Some patients enter fight mode, determined to battle the disease head-on. Others may feel trapped in flight or freeze mode, overwhelmed by fear and uncertainty. Understanding these responses, and accepting them for what they are, can help patients and caregivers navigate the emotional challenges of living with myeloma.

Moving Forward with a New Reality

A myeloma diagnosis is more than just a medical event—it’s a deeply personal and emotional journey. Learning to cope with the uncertainties, finding ways to maintain quality of life, and adjusting to the ongoing nature of treatment takes time. But with the right support—from doctors, caregivers, and fellow patients—you can navigate this new reality.

The next step is understanding how medical research measures your experience as a patient. Are the tools doctors use to track your well-being truly capturing what it feels like to live with myeloma? That’s what we’ll explore in the next article: “Do Patient Surveys Tell the Full Story? The Gap Between Data and Reality.” Stay tuned for its publication next week! 

In the meantime, you can explore other Patient and Caregiver Stories of those who have shared their myeloma experience here: 

Read More Myeloma Stories

We want to thank Pfizer (Elrexfio) for their generous support during Myeloma Awareness Month. To learn more about myeloma and explore additional resources and activities this March, visit 'Myeloma Awareness Month – From Community to Cures'.