Waldenstrom's macroglobulinaemia responds well to treatment. What type of treatment you have, and when you have it, will depend on your individual circumstances. There are lots of different factors that help your doctor decide the best treatment for you, so you may not have the same treatment as someone else with WM.
Waldenstrom's macroglobulinaemia is caused by abnormal cells produced in your bone marrow. The aim of any treatment is to get rid of these WM cells and send the disease into remission. Remission is when the cells that cause your WM have either gone away entirely or have been reduced.
At the moment there isn’t a cure for Waldenstrom's macroglobulinaemia. This means that the aim of treatment is to greatly reduce the number of WM cells in your body so that there are as few cells remaining as possible. WM responds well to treatment, which means many people feel much better after they finish a course of treatment.
Your healthcare team will monitor how well your treatment is working, by taking blood tests and talking to you about your symptoms. The amount of abnormal cells treatment kills differs from person to person and treatment to treatment.
Waldenstrom's macroglobulinaemia is likely to come back, known as ‘relapsing’. However, because WM is slow-growing, it can take many years for it to relapse. Your healthcare team might pick up that your WM relapses before you develop symptoms. When it does come back, there are still treatment options available, and your doctor will talk these through with you.
How does my doctor decide I need treatment?
Your doctor will use your blood test results, together with any symptoms and how they’re affecting your life to decide whether you need treatment or not. For some people, this will mean they need treatment as soon as they’re diagnosed with Waldenstrom's macroglobulinaemia.
If you’re diagnosed with WM and don’t need treatment right away, you’ll be regularly monitored by your healthcare team through consultations and blood tests. This is called active monitoring, and it helps your doctor to understand how your WM is behaving. Because WM is a low-grade form of lymphoma, it grows very slowly and some people will remain on active monitoring for years.
However, the abnormal cells that cause your Waldenstrom's macroglobulinaemia may gradually increase over time. When this happens, symptoms related to WM will become more noticeable, and you may get new symptoms and start to feel more unwell.
By monitoring your symptoms and looking at the levels of certain cells in your blood tests, your doctor can see whether your WM has grown to a point that it needs to be treated.
Although blood test levels can indicate to your doctor that you might need treatment, the decision is very individual. Two people can have the same blood test result, but one person may feel well, whilst the other feels unwell. The second person may go on treatment, with the first staying on active monitoring. This is why it’s important to talk openly about your symptoms and how you’re feeling with your doctor.
When looking at treatment options, your doctor will take into account many different factors to make sure you’re getting the best therapy for your individual circumstances. These include:
Your general health
Your symptoms and any related conditions you may have e.g. neuropathy, Bing Neel Syndrome
Whether you have had treatment before and what response you had.
What treatments are available?
There are different treatment options available to you, depending on your personal circumstances. In the UK, your doctor will also use the British Society for Haematology’s guidelines for the diagnosis and management for Waldenstrom's macroglobulinaemia, which provides them with the best practice and information on the treatment options available.
If you are having treatment for the first time, this is known as ‘first-line treatment’. If your Waldenstrom's macroglobulinaemia has come back, you might be offered ‘second-line’ treatment. Some drugs are only available as second-line treatments in the UK.
Why not start treatment straightaway?When you’re first diagnosed with WM, being told you don’t need immediate treatment may surprise, or even worry, you. You might think that it must be better to kill the cancer cells before they can increase more. However active monitoring is a safe and recommended way to care for people with slow-growing cancers like WM. There isn’t any evidence to show that being treated earlier has any benefits. Treatment itself can have some harsh side effects, which can be long lasting. By putting you on active monitoring, your doctor is saving treatment for when it can have the maximum impact. If your doctor sees signs that your WM is worsening, they will discuss treatment options with you immediately. However, many people stay on active monitoring for years, meaning they can lead full lives without the side effects of needless treatment.
What happens on active monitoring?You’ll have regular check-ups with your healthcare team, where you’ll have blood tests and a chance to talk about how you’re feeling and any symptoms or concerns you have. Normally these are face-to-face at the hospital, but since the COVID-19 pandemic, many check-ups have moved to video call or telephone. This doesn’t affect how you are monitored, just the way you speak to your healthcare team. Your blood tests and symptoms will help your doctor understand how your WM is behaving, and whether it’s time to start treatment or not. The check-ups also mean your doctor can pick up on any other conditions, for example anaemia, and ensure you get the right treatment for this. It’s important to raise concerns or mention any symptoms, however minor, at your check-up as your healthcare team might want to investigate these further. When you’re first diagnosed, these check-ups may be more frequent – for example, every 3 months – but as time goes by and if your WM remains stable, the check-ups may become less frequent. Some people who have been on active monitoring for years might have one check-up a year.
Is active monitoring safe?Yes. It is the recommended way to care for people with WM that isn’t growing and who either don’t have symptoms or whose symptoms are mild.