International Waldenstrom’s Macroglobulinemia Foundation



By analyzing data from hundreds of patients with asymptomatic Waldenstrom’s macroglobulinemia (AWM), researchers at Dana-Farber Cancer Institute (US), in collaboration with researchers from Mayo Clinic (US), Taipei Veterans General Hospital (Taiwan), University of Münster (Germany), National and Kapodistrian University (Greece), and University of Miami (US), have devised a risk model for determining whether patients with AWM have a low, intermediate, or high risk of developing symptomatic WM that requires treatment.

The system was designed using data from 439 patients with AWM at Dana-Farber Cancer Institute (DFCI) diagnosed between 1992 and 2014, and then compared with data from 48 patients at Mayo Clinic diagnosed between 1996 and 2013 and from 47 patients diagnosed at National and Kapodistrian University in Athens, Greece.

The model utilizes four measures at diagnosis of AWM to assess a patient’s risk:

  • Bone marrow lymphoplasmacytic infiltration
  • Serum immunoglobulin M levels
  • Beta-2 microglobulin levels
  • Albumin levels

Patients are then stratified into three groups, based on those measures:

  • High risk: median time to progression (TTP) of 1.8 years
  • Intermediate risk: median TTP of 4.8 years
  • Low risk: median TTP of 9.3 years
    (Note: Median TTP means that half of patients will progress to a point of needing treatment in less than the stated number of years, and half will progress in more than the stated number of years.)

The classification system, which is only applicable for measures collected at time of diagnosis and before a patient undergoes treatment, can improve patient assessment at the time of diagnosis and can facilitate patient monitoring. Also, most importantly, it can identify high-risk patients who might benefit from early intervention, according to the researchers.

The senior author of the study was Irene Ghobrial, MD, who has directed other studies supported by the IWMF in past years.

The researchers also developed a companion website, is external), to assist clinicians and patients in evaluating their risks and treatment strategies. They encourage patients to enter their lab data on the website and share their results with their medical care team.

The study was funded in part by DFCI, the National Institutes of Health, the Leukemia & Lymphoma Society, the Michele and Stephen Kirsch Fund for WM (Steve Kirsch is a fellow WMer), and the IWMF.

A much-deserved note of gratitude goes out to all the researchers involved in this study and to the IWMF community, whose donations helped make this research possible!

These findings also provide further evidence of the growing importance of patient data collection and analysis, as it can help find better treatments and a cure for WM. So, if you are asked to participate in a patient data registry, please do so! See: Participate in Patient Registries.

Click here(link is external) to read the press release about the research findings, and click here(link is external) to read the related journal article abstract.

The full journal article can be found on the IWMF website here.


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