WM the Basics
You might hear people use other terms when they talk about your Waldenstrom's macroglobulinaemia:
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Non-Hodgkin Lymphoma (NHL) – this is a term used for a big group of blood cancers, to which WM belongs
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B-cell lymphoma – this is a term used to describe blood cancers like WM that affect a type of white blood cell called a B-cell
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Lymphoplasmacytic lymphoma (LPL) – WM and LPL are often used interchangeably but they are slightly different diseases. If you’ve been diagnosed with LPL, you can find out more below.
What causes WM?
Your blood is made up of different cells: red blood cells, white blood cells and plasma cells. These cells are made inside your bones, in what’s known as your bone marrow. Sometimes, the process goes wrong, and the cells develop incorrectly, or abnormally.
With Waldenstrom's macroglobulinaemia, it is a type of white blood cell called B-cells that develop abnormally. Even though these abnormal B-cells aren’t of any use to your body, they keep getting produced and crowd out the other, healthy, cells.
This means the healthy cells can’t do their jobs properly, causing many of the symptoms people with WM feel like fatigue, unexplained bruising or increased infections.
Newly diagnosed FAQ's
When you’ve just been diagnosed, you’re likely to have lots of questions. To help support you, we’ve answered some of the most common questions here. if you still have questions you can always contact our Support Line or our Community Support Manager.
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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.
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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.
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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.