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While many cancer doctors see only a couple of cases of this rare type of lymphoma during their entire careers, we treat hundreds each year. This experience is backed by a long history of developing treatments for lymphomas. And we are leading toward the future by investigating new ways to treat and diagnose Waldenström's, including targeted and biologic therapies that are available at a handful of places in this country.
Waldenström's macroglobulinemia is a chronic type of lymphoma that may be treated over an extended period of time. At MD Anderson, you are followed closely by a team of experts that includes physicians of several specialties, nurses, dietitians, social workers and many other specially trained support specialists. They collaborate closely and personalize your care to fit your unique situation.
We're here to meet our patients where they are and journey with them.
Waldenström's macroglobulinemia is a type of lymphoma. According to the American Cancer Society, about six people per 1 million get the disease each year in this country. Between 1,000 and 1,500 people in the United States are diagnosed with Waldenström's macroglobulinemia annually.
Waldenström's mainly strikes people age 65 and over. It is found most often in white men. A low-grade, or indolent, lymphoma, it spreads slowly and usually is controlled easily when diagnosed early.
This chronic form of lymphoma affects blood lymphocytes, a type of white blood cell. Waldenström's macroglobulinemia cancer cells are similar to cancer cells in multiple myeloma and non-Hodgkin's lymphoma.
In Waldenström’s, the body produces too much of a protein called immunoglobulin M (IgM). When this protein builds up, the blood can become thick. This makes it difficult for the blood to move through the blood vessels.
Waldenström's macroglobulinemia cells can grow in the liver, spleen and lymph nodes, causing them to swell. They also can grow in the bone marrow, crowding out normal cells. When this happens, levels of red blood cells (which carry oxygen through the body) or white blood cells (which help the body fight infection) may fall. Levels of platelets, a type of blood cell needed to stop bleeding, also may fall.
Waldenström’s Macroglobulinemia Risk Factors
Anything that increases your chance of getting Waldenström’s macroglobulinemia cancer is a risk factor. Although Waldenström’s has no proven risk factors, certain things seem to make you more likely to develop it.
- Age: People over age 50 get Waldenström’s macroglobulinemia more often.
- Race: Waldenström’s is more common in white people.
- Gender: Men are more likely to develop Waldenström’s macroglobulinemia.
- Family history of Waldenström’s or another type of lymphoma
Not everyone with risk factors gets Waldenström’s. However, if you have risk factors, it’s a good idea to discuss them with your doctor.
Did You Know?
In some cases, people can have Waldenström's macroglobulinemia for years without showing any symptoms. When signs appear, most are caused by low blood counts or thickened blood. Symptoms vary from person to person and may include:
- Stroke-like symptoms: Confusion, loss of coordination, dizziness
- Vision problems
- Excessive bleeding, nosebleeds, bleeding gums
- Unexplained weight loss, loss of appetite
- Heavy night sweats
- Swollen lymph nodes
- Swollen abdomen (belly)
- Frequent infections
- “Pins and needles” feeling or numbness in feet and legs
These symptoms do not always mean you have Waldenström's macroglobulinemia. However, it is important to discuss any symptoms with your doctor, since they may also signal other health problems.
Early and accurate diagnosis of Waldenström's macroglobulinemia helps you have the highest chance for successful treatment. However, the disease can be challenging to diagnose. It is important for a pathologist experienced in Waldenström's to read your test results.
Since our experts focus on lymphoma and see more patients than most cancer centers, they are among the most experienced in the country at recognizing Waldenström's macroglobulinemia. These specialists use the most advanced technology and techniques to pinpoint Waldenström's.
Waldenström's Macroglobulinemia Diagnostic Tests
If you have symptoms that may signal Waldenström's, your doctor will examine you and ask you questions about your health and your family medical history.
One or more of the following tests may be used to find out if you have Waldenström's and if it has spread. These tests also may be used to find out if treatment is working.
Lymph node biopsy: A small piece of tissue is removed from a lymph node and looked at with a microscope. Sometimes the entire node is removed.
Imaging tests, which may include:
- CT or CAT (computed axial tomography) scans
- PET (positron emission tomography) scans
- MRI (magnetic resonance imaging) scans
Blood and urine tests: Blood and urine tests are used to determine and follow levels of abnormal proteins produced by Waldenström's macroglobulinemia. In the blood, these proteins are called monoclonal proteins (M proteins) or paraproteins. They are measured by a test called serum protein electrophoresis (SPEP). In the urine, these proteins are known as Bence Jones proteins. They are measured by a urine protein electrophoresis (UPEP) on a 24-hour sample of urine. An additional test, called an immunofixation (IFE) may help find small traces of abnormal proteins in either the blood or urine.
Bone marrow aspiration and biopsy
Waldenström's Macroglobulinemia Staging
Staging is a system of classifying specific cancers by how much disease is in the body and where it has spread when it is diagnosed. Such a system does not exist for Waldenström's macroglobulinemia.
However, using the International Prognostic Scoring System for Waldenström's, experts look at certain factors that may help predict outcomes. Some situations may mean a patient does not do as well. These include:
- Age more than 65
- Hemoglobin level less than 11.5
- Platelet count 100 or less
- Beta-2-microglobulin more than 3 mg/L
- Monoclonal IgM level more than 7 g/dL
In scoring Waldenström's macroglobulinemia, doctors give each of the above factors a single point. Then they assign a patient to a certain group:
- Low risk: Younger than 65 with no more than one point
- Intermediate risk: 65 or older and/or have two points
- High risk: At least three points
Getting a Second Opinion at MD Anderson
The pathologists at MD Anderson are highly specialized in diagnosing and staging Waldenström's macroglobulinemia. We welcome the opportunity to provide second opinions for Waldenström's.
Because Waldenström's macroglobulinemia is a slow-growing, chronic type of lymphoma, you may need care for an extended time. Your treatment may include a series of several therapies.
Working together and with you, our team of experts painstakingly plans your treatment, utilizing the most advanced and effective treatments, as well as therapies that help with side effects of the disease and treatment. Many times we are able to offer clinical trials (research studies) of new treatments for Waldenström's.
Our Waldenström's Macroglobulinemia Treatments
If you are diagnosed with Waldenström's, your doctor will discuss the best options to treat it. This depends on several factors, including the extent of the disease and your general health.
Your treatment for Waldenström's macroglobulinemia will be customized to your particular needs. One or more of the following therapies may be recommended to treat the cancer or help relieve symptoms.
Chemotherapy: This often is the most effective treatment, and a combination of drugs usually is used. MD Anderson offers the most up-to-date and effective chemotherapy options for Waldenström's.
Radiation therapy: New radiation therapy techniques and remarkable skill allow MD Anderson doctors to target Waldenström's macroglobulinemia tumors more precisely, delivering the maximum amount of radiation with the least damage to healthy cells.
Immunotherapy: On the cutting edge of new treatments, immunotherapies to treat Waldenström's may include:
- Monoclonal antibodies, including Rituxan® (rituximab)
- Biological therapies that develop antibodies that destroy tumor cells
- Proteasome inhibitors, such as Velcade® (bortezomib)
- Immune modulators, such as thalidomide and lenalidomide, that modify the environment of the tumor cell and allow it to die
- Targeted therapies that attack cancer cells by using small molecules to block pathways cells us to survive and multiply
Stem cell transplantation: If Waldenström's macroglobulinemia does not respond to chemotherapy or if it returns, a stem cell transplant may be recommended. MD Anderson's stem cell transplantation program is among the most active and advanced in the nation.
Plasma exchange: If you develop symptoms because your blood is too thick, plasma can be removed and replaced with normal plasma from a healthy donor. This quickly relieves the symptoms until chemotherapy or immunotherapy can destroy the Waldenström's cells that are causing the buildup of abnormal protein.
Watchful waiting: Your doctor carefully monitors the disease and your symptoms, suggesting treatment if needed.
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At the end of each workday, the normally high-energy general manager began leaving his job at Pappadeaux exhausted.
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