A team of specialists (a multi-disciplinary team or MDT) will meet to discuss your treatment, and your doctor or nurse will discuss and explain the options available to you.
Some people do not need any treatment when they are first diagnosed. WM usually develops slowly, the term to describe this gradual behaviour is 'indolent'. This means some people may not need treatment for many months, often years. During this time you will have regular check-ups in the outpatients clinic. This active monitoring is also known as being on 'watch and wait' or 'watchful waiting'.
Clinical guidelines help healthcare professionals decide on your treatment options throughout your care. You can read more about the clinical guidelines here.
Treatment options for Waldenstrom's macroglobulinaemia
Active Monitoring
If your doctor decides no treatment is needed you will have regular check-ups, to assess how you are feeling and to take blood tests to measure your blood cell counts and IgM levels. This kind of follow-up, with check-ups but without treatment, is quite common in people with WM. If you have no symptoms you will typically be seen in the clinic every 3-6 months for review.
Active monitoring t may feel difficult but can often be the best treatment for WM initially. There is no evidence that starting treatment early is advantageous. It can be hard to wait for symptoms to develop or for things to get worse before anything is done. It can make you feel anxious and unable to enjoy the relative good health you have. If this happens, it is important to talk about this with your doctor, specialist nurse and family and friends as there is support available, including psychological support.
Active monitoring is also known as 'watch and wait' or 'watchful waiting'.
When treatment starts
At the moment, there isn't a cure for WM. Instead, your treatment for Waldenstrom's macroglobulinaemia is aimed at improving your quality of life and keeping you well for as long as possible, with the least possible side effects.
Your treatment may start if:
- You begin to get symptoms that are due to your WM
- The level of IgM protein in your blood is increasing at a rapid rate or you experience hyperviscosity (thickening of the blood)
- Your blood count changes - for example, you develop anaemia (low levels of red blood cells)
- You develop other complications, such as a progressive neuropathy, cryoglobulinaemia or Cold Agglutinin Disease, that is felt to be due to the effects of the abnormal IgM levels.
The treatment you have will depend on your personal situation. Your medical team will assess you based on:
- The results of all your tests.
- Your symptoms - for example, how severe they are and whether you have neuropathy.
- Your age and general health.
There are a range of treatments available for WM. The main treatment has for many years been chemotherapy. However, as a result of research and clinical trials, many new therapies are becoming available to treat WM patients, often known as 'biological treatments'.
Common treatment regimes
Most patients with symptomatic WM will received a combination of rituximab (a biological therapy), plus chemotherapy. The exact choice of regimen depends on multiple factors, including the level of bone marrow involvement, whether there is hyperviscosity or neuropathy, the age and fitness of the patient, and if autologous stem cell transplantation is planned.
Biological treatments
A great deal of international collaboration and effort in recent years means that there are new therapies becoming available for patients with WM. This includes treatments which target chemical pathways within the lymphoplasmacytic (LPL) cells and also affect the way LPL cells work with their environment (in this case, the bone marrow).
Other biological treatments include ‘immunomodulatory’ drugs which modify the function of the immune system, such as thalidomide.
Supportive treatments
Supportive treatments are designed to counteract some of the symptoms of the lymphoma and the side effects of the treatments. In WM, these supportive treatments include antibiotics that are given to prevent infections (which may occur during chemotherapy cycles), blood transfusions and plasma exchange.
Clinical trials for Waldenstrom's macroglobulinaemia
Clinical trials are research studies that test new medical treatments and you may be asked if you would like to take part in one. Clinical trials are very important in improving future treatments for people with WM and also provide you with a chance to access new treatments that aren’t available elsewhere.
Getting second opinion
Many people are happy with their treatment plan, but some people aren’t as sure about their diagnosis or treatment recommendations and seek a second opinion.
A second opinion means seeing another GP or specialist doctor to get their view on your diagnosis and/or treatment. Although seeking a second opinion isn’t a legal right, most healthcare professionals are happy to consider your circumstances and refer you if needed.
You can read more about how to get a second opinion and whether it's the right option for you here.
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