Diet
Keeping to a healthy diet can help you feel better, whether you are on active monitoring or are on treatment.
By eating a balanced diet, you can give you body all the nutrients it needs to work well. This can help you feel stronger, improve your energy levels and help your immune system.
For most people, a balanced diet is made up of:
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At least five portions of fruit and vegetables every day
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Starchy foods (carbohydrates) like pasta, bread and potatoes. Wholegrain types are better.
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Some protein-rich foods like lean meat, eggs, pulses, nuts and fish
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Some dairy products like cheese, milk and yoghurt
Limit the following foods:
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Foods that are high fat and sugar. These carry no additional vitamins and minerals
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Processed and red meats
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Foods that are high in salt
Try to drink between 2-3 litres of liquid a day. This could be water or squashes that don’t contain sugar, as well as tea and coffee that don’t have sugar in them. Limit the number of fizzy drinks, or try to choose types that are sugar-free. Fruit juice is a healthy option, but they do have high amounts of sugar, so try to limit these to one glass a day. You may want to look at how much alcohol you drink and limit this.
Maintaining a healthy weight
Some people with Waldenstrom's macroglobulinaemia find that they lose weight whilst on treatment, due to side effects. Others, find that because they have had to change their exercise regime, they have gained extra weight.
If you’re concerned about your weight – too low or too high – speak to your healthcare team. Dieticians can recommend specific diets to help you with your specific concerns, and ensure you can keep to a healthy diet and weight.
Exercise
Many people with Waldenstrom's macroglobulinaemia find that they struggle to keep as active as they once were, due to symptoms or side effects of treatment. This can be frustrating or saddening, especially if you can’t do activities you enjoy. However, it’s important to try to keep as active as you can.
Physical activity has lots of benefits. It can help to reduce fatigue, improve your mental health, control your weight and blood pressure, and reducing your risk of heart disease. It can also help to manage some treatment side effects.
You don’t need to exercise hard to feel these benefits. Mild exercise like gentle walking, gardening and household chores can really add up. The guidelines are to do 150 minutes of moderate activity every week. These can be in bursts of just 10 minutes.
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Plan your exercise – if you know you often have more energy in the morning, then schedule in a gentle morning walk
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Build up gradually – if you’re not used to exercise or haven’t exercised for a while, start in small 5-10 minute chunks and gradually build up the time from there
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Try mild exercises like household chores (gardening, hoovering), walking or yoga
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Adapt activities you enjoy doing. For example if you are a keen cyclist but can’t manage hills, swap your old bike out for an electric one to help you on the inclines
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Get expert guidance. If you’re unsure about starting a new regime, your doctor or physiotherapist will be able to help you put together a plan for your specific needs
Managing symptoms
You may have WM symptoms or related conditions that make exercising a bit more difficult, such peripheral neuropathy which can affect balance. It’s still important to keep active, but you may need extra help.
Speak to your healthcare team before starting exercise. They should be able to refer you to a physiotherapist who can advise you safe activities, exercises that might help your symptoms, and any adjustments you can make.
Mental Health
You’re not alone if you’re struggling with your feelings and emotions whilst living with Waldenstrom's macroglobulinaemia. Many WMers report that they are struggling or have struggled with their mental health because of their diagnosis. This is perfectly normal, and there is plenty of specialist help out there so you can feel more like yourself again.
There is right way to feel – you may be anxious, stressed, angry, sad, depressed or any other number of emotions. You might feel different as soon as you’re diagnosis, it or may be months or even years after your diagnosis.
Anxiety is a very common theme among people with WM, and we have a whole page dedicated to coping with anxiety here
However you feel, and whenever you feel it, here are some ways to cope:
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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.
Mindfulness resources
Getting help
If you feel very anxious or feel you might be depressed, speak to your healthcare team. There are different services and treatments available to you, and your doctor will be able to advise and refer you where necessary.
You can also find help through other charities such as:
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Mind – support and information on mental health conditions
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Maggie’s Centres – support for people with cancer, including online or in one of their centres based in hospitals
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Macmillan Cancer Support – downloadable guides for people living with cancer, or in their centres based in hospitals
WMUK is always here to help, however you’re feeling. You can call or email us on 0300 303 5870 or support@wmuk.org.uk
Vaccinations
People with Waldenstrom's macroglobulinaemia are more at risk when it comes to viruses and infection. This is because the blood cells that help fight infection in your body haven’t developed correctly. With fewer cells to fight infection, you become more at risk of developing complications from illnesses like the flu.
There are lots of ways you can help protect yourself from infections and reduce your risk of developing complications. Things like regularly washing your hands, wearing a face mask and avoiding crowded places where possible all help to protect you.
Vaccinations also play a big part in protecting you from common illnesses so that you can continue living your life.
As someone living with WM, it’s a good idea to get the vaccines you’re offered, unless you’re advised otherwise by your doctor or healthcare team. Vaccines help your body to recognise and fight infections, either preventing illness or reducing your risk of developing complications.
What vaccines can I get?
Anyone living with Waldenstrom's macroglobulinaemia in the UK should be offered:
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Seasonal flu vaccine
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COVID-19 vaccine (including all extra doses/boosters for the extremely clinically vulnerable). You can read more about COVID-19 vaccines and other ways to protect yourself here
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Pneumococcal vaccine in the form of pneumococcal conjugate vaccine (PCV13 or Prevenar 13), followed by pneumococcal polysaccharide vaccination (PPV23 or Pneumovax) at least 2 months later (these protect against pneumonia)
Generally speaking, these vaccines are safe for people living with WM, but you should always discuss any concerns you have with your healthcare team.
Are there vaccines I can’t have?
Live vaccines are not recommended for people living with Waldenstrom's macroglobulinaemia. Live vaccines use a weakened form of the germ that causes the disease. Although these types of vaccines are very effective at preventing disease, they can make people with weakened immune systems – like people with WM – ill.
This is because they contain a small amount of the germ. Live vaccines include:
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Polio
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Herpes zoster (shingles)
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Yellow fever
If you are unsure if your vaccine is live or not, speak with your healthcare team who will be able to advise you.
The shingles vaccine
Although the standard shingles vaccine is not recommended because it is live, a non-live shingles vaccine is now available in the UK. This is called Shringrix and if you’re eligible for your shingles vaccine (between the ages of 70-79), you should ask your GP or healthcare team about getting Shringrix to help protect you against shingles.
Working with WM
Everyone’s Waldenstrom's macroglobulinaemia experience is different, and this is the same when it comes to working with WM. How your WM affects your working life depends on factors like your WM symptoms, whether you’re on treatment and what your work involves. Whatever your situation, it’s important to know that as someone living with cancer you have rights in the workplace.
Some ways your diagnosis might affect you are:
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Your symptoms disrupt your work, for example your fatigue means you find it hard to work a full day
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Treatment for your WM may mean time off work, either to be given the treatment or due to recovery and side effects
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You might need time off work to attend routine check-ups at your hospital
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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.
-
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.