Waldenstrom macroglobulinemia (WM) is generally not considered to be curable, but it is treatable. Many different medicines can help keep WM under control, often for long periods of time. Not everyone with WM needs treatment right away. In fact, some people are diagnosed with WM before they even have symptoms from it.

How long can you live with Waldenstrom's?

According to the International Waldenstrom's Macroglobulinemia Foundation (IWMF), half of the people diagnosed with this type of cancer are seen to survive for approximately 14 to 16 years.

How quickly does Waldenstrom's progress?

The cumulative probability of progression to symptomatic WM, amyloidosis, or lymphoma was 6% at 1 year, 39% at 3 years, 59% at 5 years, and 68% at 10 years. The major risk factors for progression were percentage of lymphoplasmacytic cells in the bone marrow, size of the serum M-spike, and the hemoglobin value.

How serious is Waldenstrom macroglobulinemia?

Waldenstrom macroglobulinemia (mak-roe-glob-u-lih-NEE-me-uh) is a rare type of cancer that begins in the white blood cells. If you have Waldenstrom macroglobulinemia, your bone marrow produces too many abnormal white blood cells that crowd out healthy blood cells.

Does Waldenstrom's run in families?

Waldenström macroglobulinemia is not inherited, and most affected people have no history of the disorder in their family. The condition usually arises from genetic changes in blood cells that are acquired during a person's lifetime (somatic variants), which are not inherited.

Waldenström Macroglobulinemia: When to Initiate Therapy

Is Waldenstrom's macroglobulinemia painful?

Neuropathy: In some people with WM, the abnormal antibody can attack and damage nerves outside the brain. This can lead to numbness or a painful “pins and needles” sensation in the feet and legs, which is called neuropathy.

Is Waldenstrom leukemia?

For additional information about WM, please see the free Leukemia & Lymphoma Society (LLS) booklet Non-Hodgkin Lymphoma. Waldenström macroglobulinemia (WM), also called “lymphoplasmacytic lymphoma,” is a rare, indolent (slow-growing) blood cancer that is treatable with available therapies but is not curable.

How does Waldenstrom's progress?

How does Waldenstrom macroglobulinemia progress? WM tends to progress very gradually. It creates an excess of certain types of white blood cells called B lymphocytes. These cells create an overabundance of an antibody called immunoglobulin M (IgM), which causes a blood thickening condition called hyperviscosity.

Can Waldenstrom's become multiple myeloma?

It can make it harder for blood to flow through small blood vessels and can cause symptoms of Waldenstrom's, such as problems with vision and the nervous system. The cancer cells of Waldenstrom's are similar to those of two other types of cancer: multiple myeloma and non-Hodgkin lymphoma.

Is WM hereditary?

Heredity. Inherited genes seem to play a role in at least some people who get WM. About 1 in 5 people with WM has a close relative with WM or with a related B-cell disease, such as MGUS or certain types of lymphoma or leukemia.

Does Waldenstroms cause fatigue?

Signs & Symptoms

Symptoms of Waldenström macroglobulinemia usually begin gradually. Common symptoms are fatigue and loss of energy due to anemia. Bleeding from the nose and gums may also occur, and tingling in the fingers and toes is often seen (peripheral neuropathy).

How rare is Waldenstrom's?

Waldenstrom macroglobulinemia (WM) is rare, with an incidence rate of about 3 cases per million people per year in the United States. About 1,000 to 1,500 people are diagnosed with WM each year in the United States.

Is Waldenstrom a non Hodgkin lymphoma?

Waldenstrom macroglobulinemia (WM) is a type of non-Hodgkin lymphoma (NHL). The cancer cells make large amounts of an abnormal protein (called a macroglobulin). Another name for WM is lymphoplasmacytic lymphoma.

What happens if lymphoma is left untreated?

If left untreated, the disease will lead to death. If you decline life-saving treatment, you can choose to get support from palliative care (a medical team that manages your symptoms and pain).

Is Waldenstrom's an autoimmune disease?

Waldenström macroglobulinemia represents a lymphoplasmacytic lymphoma with an indolent clinical course. The existing literature associates this hematologic malignancy with various autoimmune disorders. Notwithstanding, these autoimmune conditions have not been comprehensively characterized or systematized to date.

What is the success rate of rituximab?

Rituximab with bendamustine (Treanda, Cephalon) was studied in a phase 2 trial in patients with relapsed disease. This combination was found to be very effective, with an ORR of 92%.

Can Waldenstrom's spread?

Because lymphatic tissue is found in so many parts of the body, Waldenstrom macroglobulinemia can start almost anywhere and may spread to almost any organ in the body. When people are first diagnosed with the disease, it has usually already spread to the blood and bone marrow.

How high is IgM in Waldenstrom's?

Smoldering Waldenström macroglobulinemia (also referred to as indolent or asymptomatic Waldenström macroglobulinemia) is defined as a serum IgM monoclonal protein level of 3 g/dL or higher and/or bone marrow lymphoplasmacytic infiltration of 10% or greater and no evidence of end-organ damage, such as anemia, ...

What does macroglobulinemia mean?

Macroglobulinemia: A condition in which the blood contains high levels of large proteins. If the levels are too high the blood may become too thick or viscous and thus become too thick to flow through small blood vessels. The large protein is an antibody called macroglobulin or IgM.

How long does it take for rituximab to respond to Waldenstrom's?

Results: Twelve patients (44%; 95% confidence interval, 25.5% to 64.7%) achieved a partial response after treatment with rituximab. Median time to response was 3.3 months (range, 2.2 to 7.1 months). Responses occurred in six (40%) of 15 previously untreated patients and in six (50%) of 12 pretreated patients.

Which of the following is the most appropriate treatment for WM?

Currently, rituximab-based regimens are the primary recommended therapy for the majority of patients with WM. Rituximab is a selective chimeric anti-CD20 monoclonal antibody that lacks long-term toxicity and is relatively well tolerated.

How do you get Waldenstrom?

The DNA changes found in WM cells are usually acquired after birth (not passed on from a parent). Some of these acquired changes may have outside causes, but often they occur for no apparent reason. They seem to happen more often as we age, which might help explain why WM usually occurs in older people.

Does Waldenstrom's affect the liver?

However, the increased amount of IgM produced by Waldenström's cells can cause excess bleeding, as well as problems with vision. Other symptoms can include an enlarged liver, spleen, or lymph nodes, headaches, fatigue, weight loss, bruising, and nerve damage.

Can Waldenstrom be misdiagnosed?

Waldenström's can be mistaken for multiple myeloma or indolent lymphoma, both of which are also B-cell malignancies. About 5 to 10 percent of patients who come to our center have been misdiagnosed. The most accurate way to diagnose Waldenström's is by a bone marrow biopsy.

What immunoglobulin is increased in Waldenstrom's macroglobulinemia?

The abnormal immunoglobulin made in WM is an IgM antibody. This antibody is monoclonal, meaning that it is many copies of the exact same antibody. Serum protein electrophoresis (or SPEP) is a test that measures the total amount of immunoglobulins in the blood and finds any monoclonal immunoglobulin.