What is Waldenström’s macroglobulinaemia?

Waldenström’s macroglobulinaemia (WM) is a type of non-Hodgkin lymphoma. It is sometimes called lymphoplasmacytic lymphoma.

WM develops when lymphoplasmacytic cells (LPL cells) become abnormal (cancerous). LPL cells are a type of B-cell. B-cells are white blood cells that normally help fight infection. B-cells are sometimes called B-lymphocytes.

The abnormal LPL cells (lymphoma cells) usually build up in the bone marrow, lymph nodes, spleen and other organs. Sometimes, this can make the spleen or lymph nodes become bigger.

As the lymphoma cells build up in the body, they make large amounts of a protein called immunoglobulin M (IgM). Sometimes doctors call it the M-protein or M-band. You may also hear it called a paraprotein. IgM circulates in the blood. Large amounts of IgM in the blood can cause the blood to become thicker and more slow-moving.

Symptoms of Waldenström’s macroglobulinaemia

Waldenström’s macroglobulinaemia (WM) usually develops over a long period of time. Some people have no symptoms. It can be discovered when blood tests are done for some other reason.

Symptoms can be caused by lymphoma cells building up in the bone marrow. The lymphoma cells take up space, which makes it difficult for the bone marrow to make enough normal blood cells.

The most common symptoms are:

  • feeling weak and tired (fatigue)
  • looking very pale or feeling breathless because of a lack of red blood cells (anaemia)
  • repeated infections because of a lack of healthy white blood cells (which help fight infection)
  • bruising or bleeding easily 
  • heavy, drenching night sweats
  • weight loss.

Other symptoms

Some people have symptoms caused by high levels of IgM in the blood. The blood becomes thicker and more slow-moving than normal. This can cause:

  • headaches
  • confusion
  • nosebleeds
  • blurred vision.

Sometimes people develop numbness or tingling in their hands and feet. They may also have problems with their balance. This is due to nerve damage (neuropathy) caused by the abnormal protein in the blood.

Causes of Waldenström’s macroglobulinaemia

Waldenström’s macroglobulinaemia (WM) is more common in people over 65. It is slightly more common in men than women. The causes of WM are mostly unknown. But some things may increase your risk of developing it.

MGUS

WM is sometimes linked to cases of monoclonal gammopathy of unknown significance (MGUS). This is a condition where there is abnormal IgM in the blood.

Having a close relative with lymphoma

People who have a family member with lymphoma have a higher than average risk of developing WM. But because WM is rare, their risk of getting it is still very low. Most people who develop WM do not have any family members with lymphoma.

Like other cancers, WM is not infectious. It cannot be passed on to other people.

We have more information about causes and risk factors of non-Hodgkin lymphoma.

Diagnosis of Waldenström’s macroglobulinaemia

The most common tests for diagnosing Waldenström’s macroglobulinaemia (WM) are:

You may have blood and bone marrow tests to look at the genes in your LPL cells. Around 9 out of 10 people with WM have a genetic change (mutation) called MYD88. Your doctor or nurse can tell you more about this.

You may have a scan so your doctor can look at your organs, such as your liver and spleen. Scans can also show lymph nodes in your body. If you have an enlarged lymph node, you may also have a biopsy for lymphoma.

You can read more about the tests you may have in our information about non-Hodgkin lymphoma.

Waiting for test results can be a difficult time. It may help to talk to your family, friends or specialist nurse.

The stages and grades of Waldenström’s macroglobulinaemia

Your test results will help your doctors find out how the lymphoma is affecting your blood and bone marrow. This is called staging.

There is no standard system for staging Waldenström’s macroglobulinaemia (WM). Instead, doctors look at several factors such as:

  • the level of red blood cells in the blood
  • the number of blood clotting cells (platelets) in the blood
  • the amount of IgM in the blood
  • the amount of a protein, called beta-2-microglobulin, in the blood.

Doctors use these factors to help them predict how the lymphoma may behave and to plan treatment.

Lymphomas are also grouped as either low-grade or high-grade. Low-grade lymphomas are usually slow growing. High-grade lymphomas usually grow more quickly. WM is a low-grade lymphoma and normally develops slowly. Rarely it can change (transform) to a high-grade lymphoma.

Knowing the stage and grade of the lymphoma helps your doctor plan the right treatment for you.

We have more information about staging and grading of non-Hodgkin lymphoma.

Treatment for Waldenström's macroglobulinaemia

A team of specialists will meet to discuss the best possible treatment for you. They are called a multidisciplinary team (MDT).

Your doctor, cancer specialist or nurse will explain the different treatments and their side effects to you. They will also talk to you about things to consider when making treatment decisions.

The most common treatments for Waldenström’s macroglobulinaemia (WM) are:

  • Watch and wait

    WM usually develops slowly. Some people may not need treatment for months or years. During this time, they will have regular check-ups to monitor the lymphoma. This is called watch and wait.

    Your specialist will examine you and do blood tests. This is to check the levels of IgM protein in your blood as well as the number of red blood cells, white blood cells and platelets.

    Your doctor may start treatment if:

    • you have symptoms that are causing problems
    • the level of IgM protein in your blood is increasing
    • your blood count changes – for example, if you have low levels of red blood cells (anaemia).

    If needed, treatment for WM aims to improve your quality of life and keep you well for as long as possible, with the fewest possible side effects.

  • Immunotherapy and chemotherapy

    WM is often treated with a combination of the immunotherapy drug rituximab with chemotherapy. This is called chemoimmunotherapy. You may be given one or more chemotherapy drugs. Commonly used chemoimmunotherapy combinations include:

  • Steroids

    Steroids are drugs that are often given with chemotherapy to treat lymphomas. They help make chemotherapy more effective.

  • Stem cell transplants

    Rarely, a stem cell transplant can be used to treat WM. A stem cell transplant is an intensive treatment, so it is not suitable for everyone. Usually for WM, your own stem cells will be used (autologous stem cell transplant).

You may have some treatments as part of a clinical trial.

You may also have treatments for symptoms of WM:

  • Blood transfusions

    If you have symptoms caused by a low number of red blood cells, you may have a blood transfusion.

  • Plasma exchange

    Plasma exchange (plasmapheresis) is a process that can be done to thin the blood.


After treatment for Waldenström’s macroglobulinaemia

You will have regular follow-up appointments after your treatment. You can talk to your doctor or nurse about any concerns you may have at these appointments. Your doctor will want to know how you are feeling, and to check you are recovering from any side effects of treatment.

Late effects

Sometimes side effects may continue or develop months or years after treatment. These are called late effects. We have more information about long-term and late effects of treatment for lymphoma.

Sex life and fertility

Cancer and its treatment can sometimes affect your sex life. There ways to improve your sexual well-being and to manage any problems.

Treatment for lymphoma may affect your fertility. If you are worried about your fertility it is important to talk with your doctor before you start treatment. We have more information about:

Well-being and recovery

Even if you already have a healthy lifestyle, you may choose to make some positive lifestyle changes after treatment.

Making small changes such as eating well and keeping active can improve your health and wellbeing and help your body recover.

Getting support

Everyone has their own way of dealing with illness and the different emotions they experience. You may find it helpful to talk things over with family and friends or your doctor or nurse.

Macmillan is also here to support you. If you would like to talk, you can:

The organisations below also offer information and support:

  • Blood Cancer UK

    Blood Cancer UK offers support and information to people affected by blood cancers, including lymphoma.

  • The International Waldenström's Macrobulinemia Foundation (IWMF)

    The IWMF is an international support group for people with Waldenström’s macroglobulinaemia (WM).

  • Lymphoma Action

    Lymphoma Action gives emotional support, advice and information for people with Hodgkin lymphoma or non-Hodgkin lymphoma and those close to them. It has a national network of people with lymphoma, as well as local groups. Their website has a section called “trialslink” where you can see information about lymphoma clinical trials.

  • Waldenström’s Macrobulinemia UK (WMUK)

    WMUK aims to bring WM patients, carers, specialist doctors and nurses closer together. The charity also lobbies for the latest and best treatments for WM.


About our information


  • Reviewers

    This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Senior Medical Editor, Dr Anne Parker, Consultant Haematologist.

    Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.

Reviewed: 01 March 2021
Reviewed: 01/03/2021
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Next review: 01 March 2024
Next review: 01/03/2024