When is Treatment Needed for WM?

While Waldenstrom macroglobulinemia (WM) is currently not curable, it is treatable. There are many treatment options available to prevent or control the symptoms of WM and improve your quality of life while living with the disease. These treatments can help keep WM under control, often for long periods of time.

Do I need to start treatment as soon as possible?

Not all people newly diagnosed with Waldenstrom macroglobulinemia need immediate treatment. If you don’t have symptoms, you usually do not need to be treated. One in four people (25 percent) are asymptomatic – meaning without symptoms – when diagnosed. And because WM is a slow-growing lymphoma, you may not have symptoms for many years.

Experts recommend a “watch-and-wait” approach during this time, where your progress is medically monitored on a regular basis by your hematologist/oncologist. This allows you to avoid the use of treatments, which may have unpleasant or serious side effects, for as long as possible. In fact, there is no evidence to suggest that beginning treatment immediately when you’re asymptomatic will result in living longer than delaying treatment until symptoms appear.

The watch-and-wait approach requires you to be a proactive and involved patient who:

  • Makes regular visits to your physician; usually every three to six months.
  • Gets the necessary blood tests; these typically include a minimum of a complete blood count (CBC), a complete metabolic panel (CMP), and the IgM level.
  • Promptly reports any unusual or worsening symptoms to your medical team.

If you do develop symptoms, you may need treatment depending on the severity of the symptoms. Your hematologist/oncologist will determine whether watch-and-wait continues to be appropriate or whether treatment is required.

What are the indications that treatment is needed?

 Active treatment should only begin when a person becomes symptomatic and the disease is causing problems. Treatment should not be started based on blood tests alone. In the past, increases in IgM levels were used as an indication to start treatment; this is no longer the case, except for those with very high levels.

Experts consider the following signs and symptoms of WM appropriate reasons for treatment:

  • Anemia (low red blood cell account and low hemoglobin) due to infiltration of the bone marrow with WM cells. This is the most frequent condition requiring treatment. Generally, a hemoglobin level less than 10 grams per deciliter (g/dL) is an indication to begin therapy.
  • A low platelet count (called thrombocytopenia) due to bone marrow infiltration.
  • Symptoms such as fever, night sweats, fatigue, or weight loss.
  • Impaired kidney function related to WM.
  • Progressive peripheral neuropathy (feeling of “pins and needles” in your hands or feet).

The following complications may also be an indication for therapy:

  • Hyperviscosity syndrome (excessive thickness of the blood due to high IgM levels).
  • Symptomatic cryoglobulinemia, cold agglutinin disease, and amyloidosis.
  • Symptomatic enlargement of the lymph nodes, liver, or spleen.
  • Masses of WM cells outside the bone marrow (referred to as extramedullary masses); treatment may be initiated based on the location, size, and rate of growth of these masses.

A description of these symptoms and complications of WM can be found in our Signs and Symptoms section.