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- What is Waldenström’s macroglobulinaemia (WM)?
- Symptoms of Waldenström’s macroglobulinaemia (WM)
- Causes of Waldenström’s macroglobulinaemia (WM)
- Diagnosis of Waldenström’s macroglobulinaemia (WM)
- Staging and grading of Waldenström’s macroglobulinaemia (WM)
- Treatment for Waldenstroms macroglobulinaemia
- After Waldenström’s macroglobulinaemia (WM) treatment
- How we can help
Waldenström’s macroglobulinaemia (WM) is a slow-growing type of non-Hodgkin lymphoma. It is also called lymphoplasmacytic lymphoma.
WM is a cancer of a type of white blood cell called lymphoplasmacytic cells (LPL cells). LPL cells are a type of white blood cell called a B-cell. This is why WM is also sometimes called a B-cell lymphoma.
In people with WM, the number of abnormal LPL cells (lymphoma cells) increases over time and they begin to fill the bone marrow. This is where blood cells are usually made. Lymphoma cells can also build up in lymph nodes, the spleen and other organs, causing them to get bigger.
The lymphoma cells make large amounts of a protein called immunoglobulin M (IgM). This protein circulates in the blood. Sometimes doctors call it the M-protein or M-band. You may also hear it called a paraprotein.
WM usually develops over a long period of time. Some people have no symptoms, and the cancer is found by chance following a blood test for some other reason.
Lymphoma cells building up in the bone marrow can cause symptoms. This is because the lymphoma cells take up space, which makes it difficult for the bone marrow to make enough blood cells.
The most common symptoms are:
Some people have symptoms caused by high levels of IgM in the blood. The blood becomes thick and doesn’t flow freely. Doctors call this hyperviscosity. It can cause headaches or changes in vision and hearing. It may also make thinking difficult.
Sometimes people develop numbness or tingling in their hands and feet, or problems with their balance. This is due to nerve damage (neuropathy) caused by the abnormal protein in the blood.
The causes of WM are unknown. WM is more common in people over 65. It is slightly more common in men than women. People who have MGUS (monoclonal gammopathy of unknown significance), a condition where there is abnormal IgM in the blood, sometimes develop WM.
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 don’t have any family members with lymphoma.
Like other cancers, it is not infectious and cannot be passed on to other people.
The most common tests used to diagnose WM are:
Some people have a scan to look at organs such as the liver and spleen. Scans also look at lymph nodes in the body.
Waiting for test results can be a difficult time. It may help to talk to your family, friends or specialist nurse.
Doctors use staging to assess how the lymphoma is affecting the blood and bone marrow. This helps them to know when treatment is needed and which treatment is appropriate for each person.
There is no standard system for staging 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 and high-grade lymphomas grow more quickly. WM is a low-grade lymphoma and usually develops slowly. Sometimes it can change to become a high-grade lymphoma.
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. This is called multidisciplinary team (MDT).
Your doctor or cancer specialist or nurse will explain the different treatments and their side effects. They will also talk to you about things to consider when making treatment decisions.
WM often develops slowly. Some people may not need treatment straight away, or even for months or years. This is called watch and wait.
Even if you do not need treatment, you will have regular check-ups at the hospital. 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 troublesome symptoms
- 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).
The aim of treatment is to improve your quality of life and keep you well for as long as possible, with the fewest possible side effects. You can have most treatments for WM as an outpatient.
The main treatments for WM are:
Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. You may be given one or more chemotherapy drugs. You usually also have a targeted therapy drug called rituximab with chemotherapy. Combinations of rituximab and chemotherapy that may be used include:
- DRC – this is made up of dexamethasone (a steroid), rituximab and the chemotherapy drug cyclophosphamide
- R-bendamustine – this is made up of rituximab and the chemotherapy drug bendamustine
- FR – this is made up of the chemotherapy drug fludarabine and rituximab
- FCR – this is made up of the chemotherapy drugs fludarabine and cyclophosphamide, and rituximab
- R-cladribine – this is made up of rituximab and the chemotherapy drug cladribine.
Rituximab is usually given in combination with chemotherapy. Other targeted therapy drugs called Ibrutinib (Imbruvica®) and Bortezomib (Velcade®) may be used if WM comes back after treatment. Each drug may be given on its own or in combination with rituximab. These drugs may only be available in some situations. If a drug is not routinely available on the NHS, there may be other ways you can get access to it.
Stem cell transplants
You may have some treatments as part of a clinical trial.
You may also have treatments for symptoms of WM:
You have regular follow-up appointments after treatment. These appointments are a good opportunity for you to talk to your doctor or nurse about any concerns you have. Your doctor will want to know how you are feeling generally, and to check you are recovering from any side effects of treatment.
Sometimes a side effect may continue or develop months or years after treatment. This is called a late effect.
We have more information about long-term and late effects of treatment for lymphoma.
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 can offer emotional, practical and financial help and support.
The organisations below also offer information and support:
Blood Cancer UK
The International Waldenstrom's Macrobulinemia Foundation (IWMF)
Waldenström’s Macrobulinemia UK (WMUK)