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What is WM?

What is Waldenstrom's macroglobulinaemia?

Waldenstrom’s macroglobulinaemia (WM) is a rare type of blood cancer. If you or a loved one has recently been diagnosed, you might have some questions. We’re here to to help.

What is WM?

What is Waldenstrom's macroglobulinaemia?

Waldenstrom’s macroglobulinaemia is a rare type of blood cancer.
 

  • It is slow growing and doesn’t always need treating right away
     

  • Symptoms can vary from person to person, here are the most common
     

  • It is a form of non-Hodgkin lymphoma and is sometimes referred to as lymphoplasmacytic lymphoma (LPL) or B-cell lymphoma
     

  • There are around 4,000 people living with WM in the UK, you can meet some of them here
     

  • Don’t worry, you’re not alone in struggling to pronounce it – most of us call it WM or simply Waldenstrom’s.

WM patient, Jane, with her arms outstretched while hiking on clifftops above the sea
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What causes Waldenstrom’s macroglobulinaemia?
 

WM is caused when a certain type of white blood cell – called B-cells – develops incorrectly. Even though these abnormal cells aren’t of any use to the body, they keep on multiplying and can crowd out the other useful blood cells. This build-up of abnormal B-cells creates some of the common symptoms felt by people with WM, such as fatigue, increased infections and unexplained bruising. 

Understanding WM

Waldenstrom's macroglobulinaemia is caused when a certain type of white blood cell – called B-cells – develops incorrectly. Even though these abnormal cells aren’t of use to the body, they keep on multiplying until they crowd out the other useful blood cells. This build-up of abnormal B-cells creates some of the common symptoms felt by people with WM, such as fatigue, increased infections and unexplained bruising.
 

We’ll break down the science of WM so you can understand what’s happening to cause your symptoms.

  • 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.
Diagnosed

How is WM diagnosed?

There are three main types of test routinely used to diagnose Waldenstrom's macroglobulinaemia: blood tests, a bone marrow biopsy, and scans. You may have been referred for these tests following a visit to your GP with concerning symptoms.

 

However, around a quarter of people with WM are diagnosed ‘by chance’ after routine blood tests or during investigation for another unrelated condition.

  • 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.
Symptoms
Male doctor talking to senior man in surgery
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Symptoms of WM

Waldenstrom's macroglobulinaemia symptoms vary from person to person. Alongside blood results, your symptoms are an important way that your healthcare team will monitor your WM. So, it’s important to discuss any symptom you may have with your doctor so that they can determine if it’s related to WM and get you the care you need.

Glossary

Waldenstrom's macroglobulinaemia glossary

  • 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.

With a diagnosis of WM, you may be coming across new and unfamiliar words. Don’t worry, if you come across a term you don’t know when talking to your doctor, reading information or chatting with others affected by disease, just look it up in our WM glossary below.

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