Multiple myelomaYour guide to best cancer care

It can be overwhelming after being told that you have or may have multiple myeloma (also known as myeloma). 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.

Information and support

For more information and support, call Cancer Council on 13 11 20 to talk to an experienced healthcare professional.

To speak with an experienced health professional who can provide you with disease-specific information, answer questions, talk through concerns and connect you to blood cancer support groups, call 1800 620 420 or visit the Leukaemia Foundation website. The team can also help with practical concerns such as accommodation close to treatment, transport to appointments and financial assistance.

Call 1800 693 566 to speak to a myeloma specialist nurse for up-to-date information and support to take control of your situation and work together with your specialists. You can also visit the Myeloma Australia website.

For information about lymphoma and support from a healthcare professional, call 1800 953 081 or visit the Lymphoma Australia website.

More information is available in the ‘Resource’ section of the optimal care pathway for multiple myeloma.

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 about any symptoms you might be having such as feeling very tired and weak, having bone pain, frequent infections, unintentional weight loss or new onset back pain or other otherwise unexplained symptoms.

Initial tests you may have

Referrals

If your GP thinks you may have multiple myeloma, you will be referred to a haematologist or medical oncologist (specialist) at a public hospital or in private practice for more tests. Haematologists are doctors highly trained in conditions that affect blood and bone marrow.

It can help to have a family member, carer or friend attend appointments with you.

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

Timeframes

The timing of your specialist appointment will depend on the initial results of tests performed by your GP. If you have no or mild symptoms, an appointment within four weeks is appropriate. If you have urgent symptoms, you should see a specialist as soon as possible, ideally not more than one week.

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 of time. Accommodation and transportation support services are available and it is encouraged to have family support with you whilst you undergo treatment.

Mental health and emotional well-being

A blood cancer diagnosis can affect your mental and emotional well-being, and you may experience stress, anxiety, sadness, anger or depression. Patient support organisations, your GP or another health professional (e.g. a psychologist or social worker) can help you develop strategies to cope and can help you access a mental health treatment plan if required.

Helpful tips:

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 other health conditions you may have during your blood cancer treatment and let them know if you have any concerns.

It’s a good idea to keep a written diary or digital record of treatment details and appointments with your GP and specialists. You can ask permission to record your appointments. It’s also helpful to bring a list of questions and ask for a written treatment plan.

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

The haematologist/specialist will do more tests to see if you have multiple myeloma, to check how advanced it is and 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:

Timeframes

You should generally have results within two weeks.

Multiple myeloma is an incurable cancer. Your specialist will talk to you about your treatment options. You may be treated by a team of experts, and you may need more than one treatment type to get the best results. The team will work with you and your family or carer to plan your treatment.

You might have one treatment or a mix of treatments:

Chemotherapy uses drugs to kill cancer cells and stop the cancer growing.

Corticosteroids (steroids). These are drugs that help change your immune response by reducing inflammation.

Targeted therapy uses drugs to attack specific features of cancer cells and stop the cancer growing.

Immunotherapy is a type of cancer treatment that helps the body’s immune system to fight the cancer.

Autologous stem cell transplant. This involves collecting some of your blood before you have chemotherapy. Cells called stem cells are taken out of this blood. These stem cells are cells that help the body grow new healthy blood cells. When your chemotherapy is finished, the stem cells that were collected are injected back into your bloodstream though a drip into a vein.

Radiation therapy uses x-rays to kill cancer cells and stop the cancer growing. It might be used with chemotherapy or before a stem cell transplant.

For more information, visit Cancer Treatment. Supportive care (treatment or services that support you through a blood 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 treatment should start. Treatment for multiple myeloma should ideally begin within two weeks after staging is complete or sooner depending on the urgency of your condition.

You can ask for more time to think about your treatment options.

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.

Multiple myeloma is an incurable blood cancer and so you will need ongoing support, treatment and specialist care.

Transitioning from active treatment and a survivorship care plan

In some cases, you may need ongoing hospital-based care. In other cases, a shared follow-up care arrangement with your GP may be appropriate. Your specialist and healthcare team will work with you to make a plan. 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 side effects of treatment
• how to get help quickly if you think the blood cancer has returned or is worse
• how to look after your overall health and wellbeing
• what healthcare and community support services are available to you and how to access them.

Your specialist and healthcare team will talk with you about your needs and can refer you to other healthcare professionals and community support services.

Other information you may get:

• signs and symptoms to look out for if the cancer returns
• late effects of treatment and the specialists you may need to see
• how to make healthy lifestyle choices to give you the best chance of recovery and staying well

For more information, visit After Cancer Treatment.

In most cases multiple myeloma will return after treatment. This is known as relapsed or progressive disease.

You may be referred to the specialist or the hospital where you were first treated, or to a different specialist.

Treatment will depend on how far the blood cancer has progressed, how fast-growing it might be and the symptoms you are experiencing.

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 haematologist/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.

Decisions about cost

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.