Your doctor will ask about your symptoms and general health, and will carry out a full physical examination. If the doctor suspects that you have Waldenström Macroglobulinaemia (WM), you will need blood tests, a bone marrow biopsy and scans to assess the level of disease. A rare complication of WM is hyperviscosity syndrome: if this detected, treatment will likely be commenced urgently. Most cases of WM do not need immediate/urgent treatment, and patients are monitored on an ongoing basis until treatment is required.

The main test that is used to identify WM is a simple blood test that measures the IgM protein level. In WM, the excessive amount of IgM is measured by a technique called “serum protein electrophoresis” (SPEP). This test is carried out on the patient’s serum and separates all proteins in the blood according to their electrical charge by running an electric current through the serum sample, either in a tube or in a gel.

The IgM level is usually raised in WM. Other immunoglobulin levels (eg IgA and IgG levels) are sometimes low and it is thought that this might be the reason why some people with WM are prone to infections. A simple blood sample will show if the levels of red blood cells, white blood cells or platelets are low. Your blood tests will also show how well the liver and kidneys are working.

Confirmation of the diagnosis requires a bone marrow biopsy to look for abnormal B cells. This is done as a day case and takes about 15–20 minutes. Before the biopsy an injection of local anaesthetic is given into the skin over the hip bone. A small sample is taken from the hip bone using a needle and sent to the laboratory. This can be an uncomfortable procedure to have done but the local anaesthetic numbs the area, making it less painful. An inhaled anaesthetic (“Gas and Air”) is also available to improve tolerance of the procedure.

A body scan, typically a computed tomography (CT) scan, is done to assess whether the lymph nodes, liver spleen or other places are affected by WM prior to treatment.

Biopsies such as lymph node biopsy might be done if the medical team want to examine any tissue in more detail.

We have set up the WM Biobank at the UCL Cancer Institute with funding from WMUK and the IWMF for persons with Waldenström’s macroglobulinaemia and related disorders including IgM MGUS, Cold Agglutinin Disease, Cryoglobulinaemia, Anti-MAG neuropathy and Bing-Neel Syndrome.

We intend to collect and store samples of blood, bone marrow and cheek cells within the UCL/UCLH Biobank for Studying Health and Disease, in a prospective and sequential way, so that we can extract the genetic material from diseased cells (bone marrow) and non-diseased cells (cheek cells).

All patients who attend the WM Clinic are invited to take part in the WM Biobank initiative. This will enable us to develop a research programme that will enable further progress to be made in the field with a view to better outcomes for patients.