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- What is Waldenström’s macroglobulinaemia?
- Symptoms of Waldenström’s macroglobulinaemia
- Causes of Waldenström’s macroglobulinaemia
- Diagnosis of Waldenström’s macroglobulinaemia
- The stages and grades of Waldenström’s macroglobulinaemia
- Treatment for Waldenström's macroglobulinaemia
- After treatment for Waldenström’s macroglobulinaemia
- About our information
- How we can help
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.
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:
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:
- 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.
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.
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.
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.
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.
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:
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:
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.
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:
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
The International Waldenström's Macrobulinemia Foundation (IWMF)
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)
Below is a sample of the sources used in our Waldenström’s macroglobulinaemia (WM) information. If you would like more information about the sources we use, please contact us at email@example.com
National Institute of Health and Care Excellence (NICE). Blood and bone marrow cancers. NICE Pathways. Last accessed 3 December 2020.
National Institute of Health and Care Excellence (NICE). Ibrutinib for treating Waldenström’s macroglobulinaemia. Technology appraisal guidance (TA491). Published 22 November 2017. Available here: 1 Recommendations | Ibrutinib for treating Waldenstrom’s macroglobulinaemia | Guidance | NICE
NHS England: Clinical commissioning policy: Bortezomib for relapsed/refractory Waldenström’s macroglobulinaemia (all ages). NHS England reference 170074P. Available here: Bortezomib-for-relapsed-_-refractory-Waldenstroms-Macroglobulinaemia-all-ages.pdf (england.nhs.uk)
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.