Symptoms
Waldenstrom's macroglobulinaemia symptoms vary from person to person. Here we describe some of the most common symptoms experienced by people with WM, as well as how you can manage these.
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, even if it doesn’t appear on the list below. You might want to keep a diary of how you are feeling to help you explain to your healthcare team how your symptoms are affecting you, and how often. How much you’re affected by your symptoms may determine whether you need further tests or treatment.
Common symptoms
This list covers some important symptoms that may be felt by people living with Waldenstrom's macroglobulinaemia. However, you may find you are affected in other ways. It’s important to talk to your doctor about all your symptoms, not just those below.
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Fatigue
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Weakness or breathlessness
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Repeated infections
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Numbness or tingling (pins and needles) in fingers or toes
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Unexplained weight loss
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Fevers and night sweats
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Swollen glands
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Lumps or masses
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Poor concentration or confusion
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Bruising or bleeding easily
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Blurring or loss of vision
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Dizziness or headaches
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Fits or weakness in the facial muscles
Why these symptoms may develop
Over time, most people with Waldenstrom's macroglobulinaemia will develop some of these symptoms. Most are only affected by one or two – however everyone’s experience is unique.
Your blood is made up of red blood cells, white blood cells and platelets. Waldenstrom's macroglobulinaemia is a cancer of the white blood cells.
Healthy white blood cells help to fight infections. WM occurs when a certain type of white blood cell – called B-cells – develop incorrectly. These abnormal B-cells aren’t helpful to your body but continue to multiply, crowding out healthy cells. Without enough healthy blood cells, your body can’t act like it normally would, causing symptoms like fatigue, repeated infections, bruising or bleeding easily.
In people with WM, abnormal B-cells produce large quantities of a protein called IgM. This build-up of abnormal excess IgM can cause other symptoms such as headaches, shortness of breath, dizziness and confusion.
It can be hard to know what is caused by your Waldenstrom's macroglobulinaemia or not – sometimes there might be an underlying health condition causing you to feel a certain way, such as anaemia. This is why it’s important to discuss all your symptoms with your doctor, so that they can determine if it’s related to WM and get you the care you need.
If you are already on treatment for WM, your symptoms may be caused by the drugs you’re taking. Be sure to read the information you’re given about your treatment, and discuss any concerns or potential side effects that you’re having with your healthcare team.
How you can manage symptoms
You should mention all your symptoms, however mild, to your healthcare team. They’ll be able to determine whether you need further tests for related condition. If this is the case, you may be offered treatment. For example, fatigue may be caused by anaemia – a shortage of red blood cells – and you may be offered iron supplements or a blood transfusion.
Some symptoms are due to your Waldenstrom's macroglobulinaemia alone. Your symptoms and how they affect your day-to-day life are one way your healthcare team monitors your WM. Although treatment can come with side effects of its own, it can help alleviate WM symptoms in the long run.
You and your doctor may decide that your symptoms are manageable enough to stay on Active Monitoring. If this is the case, there are ways you can manage your symptoms so that you can continue leading a good quality life.
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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.
Anaemia
Anaemia is a shortage of red blood cells in your bloodstream.
Red blood cells are made in your bone marrow. They contain a protein called haemoglobin, which carries oxygen around your body. Haemoglobins contain a lot of iron.
When you have Waldenstrom's macroglobulinaemia, your body starts producing abnormal white blood cells. These abnormal cells take up the space usually taken by other, healthy cells, like red blood cells. This means that you end up with fewer red blood cells, and therefore less haemoglobin.
Anaemia can also be caused by a lack of certain minerals and vitamins that your body uses to create red blood cells, notably iron, folic acid and vitamin B12.
The lower levels of red blood cells and haemoglobin lead to the common anaemia symptoms like breathlessness and dizziness. This is because they aren’t able to deliver the oxygen your body needs to work properly.
Some treatments for Waldenstrom's macroglobulinaemia can cause anaemia, as they can also kill off healthy cells, like red blood cells, as well as the abnormal cells causing your WM.
What are the symptoms?
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Tiredness
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Lack of energy
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Shortness of breath
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Pale skin
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Fluttering in your heart (heart palpitations)
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Dizziness or fainting
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Headaches
How is it diagnosed?
Your doctor can use blood tests to tell if you are anaemic.
A full blood count (FBC) tests your levels of red blood cells and haemoglobin. Usually, doctors use haemoglobin levels to diagnose anaemia.
How can it be treated?
Your treatment will depend on what has caused your anaemia, and how it is affecting you.
If your anaemia is caused by low iron levels, you may need an iron supplement. Taken as tablets or through a drip (intravenously), the iron supplement provides your body with a key mineral needed to produce haemoglobins. You doctor will tell you if you need an iron supplement. Always talk to your healthcare team before taking any medication or supplements that haven’t been prescribed.
If your haemoglobin levels are very low or you have serious symptoms, you may need a blood transfusion. This is when you are given red blood cells from a donor through a drip. Although a red blood transfusion can make you feel better very quickly, it doesn’t treat the underlying cause of your anaemia which means you might see symptoms returning and need further treatment.