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Patient education: Waldenström macroglobulinemia (The Basics)

Patient education: Waldenström macroglobulinemia (The Basics)

What is Waldenström macroglobulinemia? — Waldenström macroglobulinemia, or "WM," is a rare type of lymphoma, or cancer of the lymphatic system. The lymphatic system is made up of organs all over the body that make and store cells that fight infection. These infection-fighting cells are also called "white blood cells." They are made in bone marrow, which is the tissue in the center of bones.

In people with WM, their bone marrow makes too many of 1 type of white blood cell. The growth of these white blood cells can cause typical lymphoma symptoms, including swollen lymph nodes, fever, and night sweats. In addition, the white blood cells make a protein called "IgM" or "macroglobulin." The buildup of this protein in the body can lead to other problems.

WM is also sometimes called "lymphoplasmacytic lymphoma."

What are the symptoms of WM? — Some people with WM have no symptoms for a long time, even years. Doctors call this "smoldering" WM.

When symptoms do happen, they can include:

Feeling very tired

Weakness or numbness in the hands or feet

Losing weight without trying

Fever

Night sweats

Swollen lymph nodes (the lymph nodes are small, bean-shaped organs found throughout the body)

Some people with WM have blood that is thicker than normal. Doctors call this "hyperviscosity syndrome." This can happen as a result of the extra proteins in the body. Hyperviscosity syndrome is an emergency. It can cause:

Bleeding from the nose or gums

Changes in vision or hearing

Headaches

Dizziness

Passing out

Being unable to move or talk normally

In severe cases, hyperviscosity syndrome can even cause a stroke or coma (a deep state of unconsciousness).

Is there a test for WM? — Yes. If your doctor thinks that you might have WM, they will order tests. They might include:

Blood and urine tests

Bone marrow biopsy – A doctor will take a very small sample of bone marrow. Another doctor will look at the sample under a microscope to see if cancer cells are present.

Imaging tests – Imaging tests create pictures of the inside of the body.

The results of these tests can tell your doctor if WM or another condition is causing your symptoms.

How is WM treated? — It depends. If your WM is not yet causing symptoms, you might not need treatment right away. But you will need to get regular blood tests. Tell your doctor right away if you do start having symptoms.

People who have symptoms are treated with medicines. This often includes chemotherapy, which are medicines that kill cancer cells or stop them from growing. You might get other medicines, too.

Some people with WM have symptoms due to blood that is thicker than normal. This is treated with something called "plasmapheresis," or "plasma exchange." For this treatment, a machine pumps blood from the body and removes the extra IgM protein. Then, the machine returns the blood to the body.

Your doctor or nurse might also talk with you about being in a clinical trial. A clinical trial is a research study that uses volunteers to test new treatments.

What happens after treatment? — Treatment does not cure WM, but it can reduce symptoms and help people live longer. Your doctor will do regular exams and tests after you start treatment. This is to see how your body responds to the treatment.

Even if treatment works and your symptoms go away, they will eventually come back. You will continue to see your doctor regularly for exams and tests. This way, you can start treatment again right away when your symptoms come back, or when tests show that the proteins found in WM are in your body again.

What happens when my WM comes back? — When your WM comes back, you might get the same medicines that you had the first time. Or your doctor might suggest trying different treatments.

What else should I do? — Follow all your doctors' instructions about visits and tests. It's also important to talk to your doctor about any side effects or problems you have during treatment.

Getting treated for WM involves making many choices, such as what treatment to have and when. Always let your doctors and nurses know how you feel about a treatment. Any time you are offered a treatment, ask:

What are the benefits of this treatment? Is it likely to help me live longer? Will it reduce or prevent symptoms?

What are the downsides to this treatment?

Are there other options besides this treatment?

What happens if I do not have this treatment?

More on this topic

Patient education: Lymphoma (The Basics)
Patient education: Multiple myeloma (The Basics)

This topic retrieved from UpToDate on: Feb 02, 2024.
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