International Waldenstrom’s Macroglobulinemia Foundation


Prognosis in Waldenstrom’s Macroglobulinemia

A prognosis is an informed medical guess, or prediction, as to the probable course and outcome of a disease. Your prognosis will depend upon a number of factors including your age, the rate at which your disease progresses, and your response to therapy.

Unlike other cancers, Waldenstrom macroglobulinemia (WM) has no standard staging system. In the case of WM, the stage is called a prognostic score. The International Prognostic Scoring System for Waldenstrom Macroglobulinemia (IPSSWM) is an internationally accepted tool used to estimate the long-term outlook for symptomatic patients requiring therapy. It’s based on the following factors:

  • Age
  • Hemoglobin level
  • Platelet count
  • Beta-2 microglobulin level
  • Serum (blood) monoclonal IgM level

These factors are scored to put people with WM into one of three risk groups: low, intermediate, and high. Your prognostic score, in addition to the specifics of your situation, can help guide your physician in making treatment recommendations and assessing your individual outlook.

One way to look at long-term outlook is by median survival rates. Median survival is the length of time at which half of the patients in a group have died, and half are still living. The researchers that developed the IPSSWM determined the median survival rate for each risk group using data from WM patients diagnosed and treated before January 2002. They found the following:

  • 12 years for the low risk group
  • 8 years for the intermediate risk
  • 5 years for the high risk group

However, the outlook for people with WM has significantly improved in recent years due to the availability of new types of treatments. Recent studies suggest median survival rates closer to 14-16 years after diagnosis. This, plus the fact that people with WM tend to be older when diagnosed, puts their survival rates closer to those expected for the general population.

It’s important to keep in mind that published survival rates are based on how groups of people with WM respond to treatment. These statistics are less useful in characterizing the prognosis for any given individual with WM, whose outlook can be affected by many factors such as their overall health, access to therapy, and tolerance of side effects. Talk with your doctor to get an individualized assessment of your long-term outlook.

Dr. Jeffrey Matous of the Colorado Blood Cancer Institute discusses prognosis and survival in the following short video, entitled, “Doctor, How Long Am I Going to Live?”


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