At UCLH you will have access to up-to-date diagnostic methods, including genetic analysis of the bone marrow, which is carried out as standard, and the latest treatments through clinical trials (as available). Following a complete clinical and diagnostic assessment a personal, individual care plan based around your needs will be put in place. You will receive expert care from an experienced team in a safe environment.

Treatment is delivered within a number of comprehensive specialised services led by medical and nursing cancer care experts. This is enhanced further by support from a dedicated team of clinical nurse specialists (CNSs) who complement the medical team and oversee your treatment journey. They offer ongoing support with your diagnosis, investigations and treatment: this includes telephone advice and support when you are at home.

Treatment choices are tailored to the specific circumstances of the individual patient. This is done through a close working relationship between the patient and specialist doctors in this clinic.

Your treatment plan

Chemotherapy (chemo) is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells, and can be given: as tablets; into a vein (‘intravenously’); or as an injection under the skin (‘subcutaneously’). You may be given just one type of chemotherapy drug or you may be given two or more such drugs together (combination chemotherapy), typically including the monoclonal antibody Rituximab. The selection of treatment is determined by the nature of the problems you are facing as a result of your WM and your own state of health, which will impact on your ability to tolerate different treatments. Some treatments (such as Fludarabine and Cladribine) can affect the stem cells in your bone marrow and should be avoided if there is a chance of needing a stem cell transplant in the future.

Increasingly, biological therapies such as BTK inhibitors, PI3K inhibitors and other novel agents are being employed in the fast-moving filed of WM therapy. You may be offered the chance to participate in a clinical trial, if you are eligible and this is felt to be in your best interest.

Your specialist will explain which treatment is appropriate for you, but if ever you feel unsure of what is being offered or why, you can consider seeking a second opinion. It is important to feel comfortable with the options that have been recommended and to have a good understanding of what is to follow.

Some people with WM may have treatment involving the use of their own stem cells (autologous stem cell transplant, ASCT) or stem cells from a donor (allogeneic stem cell transplant, allo-SCT). Stem cells (in this context a specific type of stem cells called ‘haematopoietic cells’ or ‘HPCs’, i.e. “blood-producing cells”) are primitive cells found in the bone marrow that can develop into mature blood cells. They are found in the bone marrow and can be collected from the patient or donor before high dose chemotherapy is given to the patient. ASCT is sometimes called “high-dose chemotherapy with stem cell support”.

There are potentially serious side effects associated with these treatments and they are not suitable for everyone. In the current era, where access to novel therapies is increasing, careful consideration is given when recommending a stem cell transplant. Stem cell transplants are only performed after chemotherapy has been given to reduce the burden of the disease and put it into a remission. These treatments serve to consolidate that remission, and if performed, are done early on during the course of the disease, in order to gain maximal benefit.

You might be asked if you would like to take part in a clinical trial, a research study that tests new medical treatments. Clinical trials are very important in improving future treatments for people with your type of lymphoma. Also, some of the newer treatments are only available for people who are taking part in trials. There may not be a clinical trial open, or you may choose not to take part in a trial, in which case you will be offered the best treatment available at that time.

The UK trial of Bortezomib, Cyclophosphamide and Rituximab vs. Fludarabine, Cyclophosphamide and Rituximab has recently been completed although it is too early to know the results of the trial.

Because WM develops slowly, sometimes with no symptoms at all, some people will not need any treatment at the beginning. Some people with WM are on watch and wait for over 10 years and a few people will never require treatment.

If the doctor decides that no treatment is needed, you will have regular check-ups to assess how you are feeling and to take blood tests to measure the blood cell counts and the IgM levels. This kind of follow-up with check-ups but without treatment is quite common in people with a low-grade non-Hodgkin lymphoma.

If you have no symptoms of WM you will be seen in the clinic every 3–6 months.

You are usually started on treatment for WM if:

  • you develop symptoms of WM (see pages 3 and 4) or your symptoms become more troublesome;
  • or if your blood IgM levels increase;
  • or if your blood cell counts change (eg when the red blood cell count or platelet count fall).

The treatment you will be given will depend on your particular circumstances and the
medical team will prescribe the most suitable drugs for you on the basis of:

  • the results of all the tests
  • your symptoms – for example how severe they are and whether or not you have neuropathy
  • your age and general health.

Treatment is aimed at improving your quality of life and keeping you well for as long as possible, with the least possible side effects.

If your doctor thinks that you need treatment, you might have one or more of these treatments:

  • chemotherapy drugs
  • steroids
  • monoclonal antibodies
  • biological treatments
  • stem cell transplant

The UCH Macmillan Cancer Centre is well equipped with state-of-the-art facilities for plasma exchange which is available around the clock, depending on clinical need. Should you require plasma exchange for HVS, this will be arranged and carried out either as a day case or inpatient, as a bridge to definitive therapy.

In addition to the Macmillan Information and Support Centre in the Cancer Centre, the WM Service at UCLH has a close alliance with the patient organisation WMUK, the UK point of contact for WM, and patients and their carers are encouraged to make contact.