Waldenström's macroglobulinaemia

WM usually develops slowly. It may not cause any symptoms for a long time.

The most common WM symptoms are:

• feeling weak and tired (fatigue)
• feeling mentally slow or ‘foggy’
• anaemia – this is caused by a low number of red blood cells in the blood
• bruising or bleeding easily – this is caused by a low number of blood-clotting cells (platelets) in the blood
• repeated infections – this is caused by a lack of healthy white blood cells which help fight infection
• heavy, drenching night sweats
• weight loss.

Other symptoms may include:

• numbness or tingling in the hands and feet
• headaches
• confusion
• blurred vision
• problems with balance.

A change in how you feel or how your body works can be caused by conditions other than WM. But always ask your GP to check any ongoing, new or unexplained symptoms.

We are also here if you need someone to talk to. You can:

• call the Macmillan Support Line free on 0808 808 00 00
• chat to our specialists online.

WM often develops slowly and causes few symptoms to start with. It might be found during blood tests for some other reason.

The most important test for diagnosing WM is a bone marrow test.

You may have blood and bone marrow tests to look at the genes in the lymphoma cells. Around 9 out of 10 people with WM (90%) have a genetic change (mutation) called MYD88. Your cancer doctor or specialist nurse can tell you more about this.

You may have further tests to check how WM is affecting you. For example, you may have a scan to check your liver, spleen or lymph nodes throughout your body.

You can read more about the tests you may have in general lymphoma information.

Waiting for test results can be a difficult time. It may take up to 2 weeks for the results to be ready.

You may find it helpful to talk to family members or a close friend. Your specialist nurse can also provide support.

You can talk to one of our cancer support specialists for free on 0808 808 0000, 7 days a week, 8am to 8pm.

A team of specialists will meet to discuss the best possible treatment for you. They are called a multidisciplinary team (MDT).

After the MDT meeting, you will usually meet with your cancer doctor and specialist nurse. They will talk to you about:

• whether you need treatment straight away
• the different treatment options and their side effects
• things to consider when making treatment decisions.

WM often develops slowly. If you have no symptoms, you may not need any treatment.

Instead, you will have regular tests and appointments to monitor the lymphoma and check for signs that you need to start treatment. This is called watch and wait. It may also be called active surveillance or active monitoring. It is a way of safely delaying treatment until you need it.

You may start treatment if:

• you have symptoms that are causing problems
• the level of IgM protein in your blood is continually increasing
• your blood count changes – for example, if you have low levels of red blood cells (anaemia).

The aim of treatment is to improve your quality of life and keep you well for as long as possible, with the fewest possible side effects. You can have most treatments for WM as an outpatient. You may have some treatments as part of a clinical trial.

Cancer drug treatment

WM is often treated with cancer drugs. Treatment usually includes an immunotherapy drug called rituximab in combination with other cancer drugs. For example, combinations that may be used include:

• DRC – dexamethasone (a steroid), rituximab and the chemotherapy drug cyclophosphamide
• R-bendamustine – rituximab and the chemotherapy drug bendamustine
• R-cladribine – this is used less often and is made up of rituximab and the chemotherapy drug cladribine.

Other drugs may be used. Your cancer team will give you information about your treatment plan. Some newer drugs may only be available in some situations. If a drug is not routinely available on the NHS, there may be other ways you can get access to it.

Treatment for WM symptoms

You may also have treatments for symptoms of WM:

Treating WM relapse

Treatment for WM can be very effective. It may make all signs of lymphoma disappear for a time. But this type of lymphoma usually comes back after treatment. This is called recurrence or relapse.

If you have a relapse, you can usually have more cancer drug treatment to help control it again. This may include targeted therapy drugs such as zanubrutinib or ibrutinib. Your cancer team will explain which drugs are suitable for you.

Sometimes WM is treated with intensive treatment that involves a stem cell transplant. This treatment has a risk of more serious side effects and is not suitable for everyone. Your cancer team can give you more information.

Treating transformed WM

Sometimes WM can change from low grade into high grade lymphoma. This is called transformation or transformed WM. It is not common. But your cancer team will do tests to check for this when you are diagnosed or have a relapse of WM.

High grade lymphoma grows more quickly and is treated differently. Transformed WM is treated in the same way as another type of lymphoma called DLBCL.

People often have many different feelings during and after WM treatment. If you have finished treatment, you may feel relieved it has ended but worried about what might happen in the future.

It is important to know where to get support or information if you need it. People often need support even some time after WM treatment. But sometimes it is difficult to know who to ask for help.

You can:

• ask your GP or someone from your cancer team for advice about support in your area
• find cancer support services near you
• call the Macmillan Support Line for free on 0808 808 00 00.
• chat to our cancer information specialists online.
• visit our non-Hodgkin lymphoma forum to talk to people who have been affected by lymphoma, share your experience, and ask your questions.

You may also find the HOPE programme helpful. The programme is a free 6 week self-management course designed to help you develop techniques and strategies when living with or after cancer. Topics include goal setting, fatigue management, and wellbeing.

You can sign up for the online HOPE programme. Or to find out more about face to face programmes in your area, email ServiceOpsSupport@macmillan.org.uk

• Blood Cancer UK offers support and information to people affected by blood cancers, including lymphoma.

• Lymphoma Action provides high quality information and support for people affected by lymphoma. It provides helpline services and a range of peer support including online support meetings, educational events and webinars. Its website includes TrialsLink, a database of lymphoma clinical trials.

We know cancer can affect you physically, emotionally and financially. We have information and advice about different ways cancer might impact you, such as help with:

• eating problems and your appetite
• fertility
• how you're feeling
• improving your sexual well-being
• managing pain and discomfort
• money and work
• tiredness (fatigue)
• trouble sleeping
• uncertainty
• walking and mobility problems.