Waldenström’s MacroglobulinaemiaYour guide to best cancer care

It can be overwhelming after being told that you have or may have Waldenström’s macroglobulinaemia (WM). A lot can happen quickly, and you might have lots of questions, like 'What happens next after a diagnosis?'

This support resource can help to guide you, your family, and your friends through this experience. Other international resources are available online but may discuss approaches to testing and treatment that are not standard of care in Australia.

Information and support

For more information about WM, visit the Leukaemia Foundation website or call Cancer Council on 13 11 20 to talk to an experienced healthcare professional.

To speak with an experienced healthcare professional who can provide you with disease-specific information, answer your questions, talk through your concerns, and connect you to blood cancer support groups, call 1800 620 420 or visit the Leukaemia Foundation page. The team can also help with practical concerns such as accommodation close to treatment, transport to appointments, and financial assistance. The Leukaemia Foundation also has a WM Network Facebook support group where people can share their experiences, information, and research news.

Lymphoma Australia nurses can help patients and their families understand their diagnosis and treatment options, navigate the lymphoma journey, and connect patients with others and appropriate support networks. Call 1800 953 081 or visit the website for education, support, and awareness for lymphoma and WM.

WMozzies is an Australian community support group providing information and support for people living with WM and their caregivers. They are a national affiliate of the International Waldenström’s Macroglobulinaemia Foundation based out of USA. The associated connect group provides the opportunity to connect with other WM patients mainly in USA. WMozzies lead a global patient-derived database which you can join and publishes the collective lived experience of hundreds of patients with WM.

More information is available in the ‘Resource’ section of the optimal care pathway for Waldenström’s macroglobulinaemia.

If you need a translator, call TIS on 13 14 50 or visit the TIS National website.

Symptoms

Your general practitioner (GP) or other primary care physician will do a check-up to see if they can find out what is making you unwell. They will ask you about any symptoms you might be having such as fatigue (most common), cramps, night sweats, fevers, unexplained weight loss, headaches, shortness of breath, nose bleeds, numbness or weakness, or blurred vision. Almost half of all patients diagnosed with WM do not have any symptoms and diagnosis is made when a blood test comes back with abnormal results.

Initial tests you may have:

Referrals

If your GP thinks you may have WM, they’ll refer you to a haematologist or medical oncologist (specialist) at a public hospital or in private practice for more tests. Haematologists are highly trained in conditions that affect blood and bone marrow. Oncologists are highly trained in the diagnosis and treatment of cancers.

You can bring a family member or friend with you to your appointments.

Timeframes

The timing of your specialist appointment will depend on your initial results of tests performed by your doctor. For a small number of patients, an urgent appointment or hospital admission may be required, but for most people there is not an urgent need for a specialist appointment straight away, your doctor will discuss appropriate timeframes with you.

If you can’t get an appointment within these timeframes, follow up with your GP.

Travel to access tests, treatment and care

You may have to travel to see a specialist, undergo tests or access treatment, especially if you live in a rural or regional area. In some cases, you may have to leave home for an extended period. Accommodation and transportation support services are available, and it is encouraged to have family support with you whilst you undergo treatment. Most MPN patients require ongoing treatment and management via regular blood tests and visits to their haematologist.

See further information on Leukaemia Foundation’s accommodation and transport support by visiting their accommodation services page and transport services page.

Mental health and emotional well-being

A blood cancer diagnosis can affect your mental and emotional wellbeing. Patient support organisations, your GP, or another health professional such as a psychologist or social worker, can help you develop strategies to cope. They can help you access a mental health treatment plan if required.

There may be local cancer support groups where other people with cancer support each other in a safe setting. Cancer Council can assist with finding out if there is a group near you and you can contact them by phoning 13 11 20.

Helpful tips

Let your doctor know what is most important to you in a specialist (e.g., that they specialise in ALL, cost, location, bedside manner, expertise).

Ask your GP to recommend trusted sources of information and support — you can share these with your family and friends too.

Talk to your GP/specialist about how to manage any other health conditions you may have during your blood cancer treatment and let them know if you have any concerns.

It is very helpful to request and keep copies of your blood test results, as well as reports of any scans or biopsies, etc. You are then able to take them with you when you see any other health provider for other health conditions, so that your care may be best suited to your particular needs.

It’s a good idea to keep a written diary or digital record of treatment details and appointments with the GP and specialists. You can ask permission to record appointments. It’s also helpful to bring a list of questions and ask for a written treatment plan. This can be an important source of information for later in life.

Don’t ignore new signs and symptoms. Alert the GP or specialist. Trust yourself. It’s OKAY to be persistent.

The haematologist/specialist will do more tests to determine if you have WM to help determine the best treatment for you. This process of working out if you have a medical problem is called making a diagnosis.

You might have one test or a mix of tests:

These tests will give the specialist more information about the glioma, such as where exactly it is in your body, if the cancer is growing or has spread, and what stage it is at. This is called staging, which helps to work out the best treatment for you.

Timeframes

You should have most results back within four weeks.

Your specialist will talk to you about your treatment options for WM. You may need more than one treatment type to get the best results, and you will require monitoring and are likely to require ongoing treatment to manage your WM for the rest of your life.

Many patients newly diagnosed with WM experience no symptoms and have a slow growing disease that does not warrant treatment at this time and can avoid side-effects that treatment brings. Monitoring is through clinic appointments and blood tests every few months.

You might have one treatment or a mix of treatments:

Chemotherapy. Drugs that are used to kill cancer cells to stop the cancer growing.

Immunotherapy is a type of cancer treatment that helps the body’s immune system fight the cancer. Rituximab, an immunotherapy drug, is often used alongside chemotherapy as an in initial treatment for WM.

Targeted therapy is a drug treatment that targets specific features of cancer cells to stop them growing and spreading. Zanubrutinib is used in patients who do not respond well to or are not appropriate for immunotherapy-chemotherapy approaches.

Plasma exchange. A treatment to temporarily reduce the IgM protein from the blood.

For more information, visit Cancer Treatment. Your haematologist may also discuss participating in a clinical trial which provides you access to new treatments.

Supportive care (treatment or services that support you through a cancer experience) are also available, often delivered through a multidisciplinary team that may include nurses, pharmacists, psychologists, physiotherapists and dietitians.

Timeframes

By evaluating your symptoms and test results, your specialist will determine when your treatment should start. Once a decision has been made that you need to start treatment for WM, it will generally be started within four weeks. There may be instances where your treatment could be delayed beyond this timeframe. If this occurs your specialist will discuss this with you.

You can ask your GP for a referral to another specialist for a second opinion.

For more information on clinical trials, visit the Australian Cancer Trials page or search the Australian New Zealand Clinical Trials Register. Participation in a clinical trial is voluntary, and you can choose not to participate in a clinical trial or withdraw from a clinical trial at any point if you wish.

For relationship support and, if necessary, referral to counselling services, visit the relationships and sex page on Leukaemia Austalia. Canteen Australia also provides some helpful information on fertility options after a cancer diagnosis.

You can ask for more time to think about your treatment options, and you can ask your GP for a referral to another specialist for a second opinion.

WM is a highly treatable low-grade lymphoma but is not curable with current therapies. Patients with WM may need multiple courses of therapy over their lifetime, given the relapsing nature of the lymphoma. Discussing keeping vaccinations up to date with your haematologist, such as with the COVID vaccine, is important due to the effects of blood cancer on your immune system.

Monitoring for late effects and second malignancies, which are more common in patients with WM, is required, and primary prevention and risk minimisation strategies are encouraged. Important supportive measures include monitoring for low iron stores and nutritional support, particularly for patients with relapsed WM.

Survivorship

Current therapies mean that most people with WM will go on to live long healthy lives and you may need regular ongoing follow-up appointments and care.

Your specialist and healthcare team will talk to you about your needs and can refer you to other health professionals and community support services. Other information you get might be about:

This plan will explain:

• who your main contact person is after treatment
• how often you should have check-ups and what tests this will include
• understanding and dealing with potential side effects of treatment
• how to get help quickly if you have an urgent problem
• how to get help quickly if you have an urgent problem, e.g., blood clots and unusual bleeding
• what healthcare and community support services are available to you and how to access them

Your specialist and healthcare team will talk to you about your needs and can refer you to other health professionals and community support services. Other information you get might be about:

• the side effects of treatment and the specialists you may need to see
• how to make healthy lifestyle choices to give you the best chance of staying well

For more information, visit After Cancer Treatment.

Most patients with WM will relapse after responding to initial treatment. Access to the best available therapies, including clinical trials and treatment with a multidisciplinary team, are crucial to achieving the best outcomes for relapsed disease.

In managing people with relapsed or progressive WM, considerations include:

• the choice of second and subsequent lines of treatment – this is strongly influenced by the previous treatment regimens and duration of response
• the risk of infection rises due to the side effects of therapy on the immune system (the body’s way of fighting infection)

Advance care planning

Your GP or healthcare team may talk with you, your family, and carer about your future treatment and medical needs.

Advance care directive

Sometimes known as a living will, an advance care directive is a legally binding document that you prepare to let your family and healthcare team know about the treatment and care you might want or not want in case you become too unwell to make those decisions yourself.

For more information, visit Advance Care Planning Australia.

Palliative care

Your specialist may refer you to palliative care services, but this doesn’t always mean end-of-life care. Today, people can be referred to these services much earlier if they’re living with cancer or if their cancer returns. Palliative care can help you to live as well as you can, including managing pain and symptoms. This care may be at home, in a hospital or at another location you choose.

Speak to your GP or specialist or visit Palliative Care Australia.

Making treatment decisions

You may decide not to have treatment at all, or to only have some treatment to reduce pain and discomfort. You may want to discuss your decision with your healthcare team, GP, family and carer.

For more information, visit Advanced Cancer Treatment.

You may have to pay for some appointments, tests, medications, accommodation, travel or parking. Speak with your GP, specialist or private health insurer (if you have one) to understand what is covered and what your out-of-pocket costs may be.

If you have concerns about costs, talk to your healthcare team or a social worker about:

• being bulk-billed or being treated in the public system
• help with accommodation during treatment
• the possible financial impact of your treatment

You can call Cancer Council on 13 11 20 to speak to a healthcare professional about financial support. For more information about costs, visit Practical and financial assistance and What will I have to pay for treatment.