What Patients Should Know About Living With WM and the Road Ahead

Patients with Waldenstrom macroglobulinemia (WM) should understand that this disease is typically slow growing, meaning many patients may not have symptoms for years before needing treatment, explained Alisha Kimble, senior outcomes researcher at Ontada.

This makes WM difficult to detect early, Kimble noted, which is why continued research is crucial — not only to improve detection but also to gather enough data for meaningful analysis.

Kimble also highlighted that survival rates for WM are relatively high. Her study identified a five-year survival rate of about 78%, which is consistent with established estimates from other sources. However, she emphasized that although survival is favorable, many patients experience lower quality of life over time due to chronic disease-related issues.

Transcript

What do patients with WM need to know about the natural course of this disease?

Typically, this disease is indolent in nature, meaning that patients are often asymptomatic. They may not experience symptoms for the first few years before actually receiving treatment. This makes it difficult to identify, which is why research in this area is so important — not only because it’s hard to detect, but also because identifying enough patients to provide statistical power for analysis is challenging. That’s what brings a lot of value to this research.

Some other key things for patients to know: with this disease, survival rates are relatively high. We identified a five-year survival rate of about 78%, which aligns with SEER estimates from the American Cancer Society, and WHO estimates around 76%, making it higher than for some other rare diseases. However, these patients typically experience a lower quality of life due to chronic conditions over time, which can offset that survival advantage.

Another important point for patients is the use of risk prognostic tools. For Waldenstrom, there’s the Revised International Prognostic Scoring System, as well as a modified version. Both are risk calculators that use lab values to assess disease severity. If patients undergo this risk assessment early in their care, it can help physicians better predict outcomes and guide treatment planning.

Transcript has been edited for clarity and conciseness.

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