Chronic myeloid leukaemiaYour guide to best cancer care

It can be overwhelming after being told that you have or may have chronic myeloid leukaemia (CML). 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

If you need additional information or would like support, you can visit the leukaemia page 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 homepage. The team can also help with practical concerns such as accommodation close to treatment, transport to appointments, and financial assistance.

For more information about CML, visit the CML page from Leukaemia Foundation.

More information is also available in the ‘Resources’ section of the optimal care pathway for ALL.

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 feeling very tired and weak, unexplained weight loss, bone pain, bruising or bleeding and night sweats. Some people experience symptoms, such as feeling very full after only eating a little/unable to finish meals or having abdominal discomfort, but it is common to have no symptoms at all.

Initial tests you may have:

Referrals

If your GP thinks you may have CML, 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.

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

Timeframes

The timing of your specialist appointment will depend on the initial results of tests performed by your GP. For a small number of patients an urgent appointment or hospital admission may be required, but for most people with no urgency, an appointment between four to six weeks is appropriate.

If you can’t get an appointment within this timeframe, 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.

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 well-being. Many people being treated for a blood cancer experience a range of feelings and it is not uncommon to feel low, depressed, or anxious. Patient support organisations such as the Leukaemia Foundation or Cancer Council, 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.

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’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 see if you have CML. 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 cancer, 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.

CML has three phases called chronic, accelerated and blast. More than 90 per cent of people who are diagnosed, and with ongoing (potentially life long) treatment, remain in chronic phase CML, which is the least advanced phase.

Timeframes

You should generally have results within two weeks.

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

You might have one treatment or a mix of treatments:

Targeted therapy. This uses drugs that attack specific features of cancer cells and stop the cancer growing. The standard treatment for most people with CML is called a tyrosine kinase inhibitor (TKI). TKIs are oral medications that work by specifically blocking the signals CML cells need to divide and grow so the CML cells can’t survive.

Chemotherapy. Drugs are used to kill cancer cells and stop the cancer growing. Your doctor may recommend a mild form of chemotherapy before you start a TKI.

Supportive therapies. These are treatments that support you through a cancer experience. These can help you manage side effects that you might experience while undergoing treatment.

For more information, visit Cancer Treatment. 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. For most people this will generally be within four weeks of this decision being made. 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 Australia. Canteen Australia also provides some helpful information on fertility options after a cancer diagnosis.

There are several types of TKI therapy, so it is important you take the time to discuss your options with your specialist and understand the advantages and disadvantages of each drug before making a decision.

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.

Recovery

Lifelong TKI treatment for your CML may be required, and this can affect your physical, psychological, nutritional and general wellbeing. Comprehensive support and side effect management should be part of your routine ongoing care.

Survivorship care plan

Current therapies mean that most people with CML are expected to have a normal life expectancy. You may need regular ongoing follow-up appointments and care, so your specialist and healthcare team will work with you to make a survivorship care plan for you and your GP. Your survivorship care plan may need to be updated over time if your needs change. 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 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 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.

If your CML isn’t responding well to treatment (refractory), or advances into the more aggressive accelerated or blast phases of disease (progressive), 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.

Options may include one or more of:

• treatment with another TKI
• chemotherapy
• a clinical trial
• an allogeneic stem cell transplant

Advance care planning

Your GP or healthcare team may talk with you, your family, and carer about future treatment and medical needs. It is important to have this conversation so that you can make your wishes and decisions about your treatment and care known to your doctors and family.

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

Palliative care can help you to live as well as you can including managing pain and symptoms, psychosocial support, and assistance in identifying care goals. This care may be at home, in a hospital, or at another location you choose. 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 blood cancer or if their blood cancer returns.

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.

Survivorship

Many people are living longer with cancer, and it is important that people receive ongoing care and support in finding a ‘new normal’, managing general health, the effects of the cancer and/or treatment, and coping with the emotional impact of cancer and fear of recurrence.

Life is not exactly the same as it was before a blood cancer diagnosis. A ‘new normal’ is about living with your blood cancer or living in remission, and creating and maintaining your ‘new normal’ to live as good a life as possible while facing changes such as, but not limited to:

• physical/mental/spiritual changes
• emotional/relationships/identity/sexuality
• financial, ability to work/return to productivity

Seeking information, tools, and support, and accepting help to manage challenges that arise throughout a person’s cancer experience is very important. Having this support can enable individuals to have a high quality of life and it is important to remember that everyone handles it and is affected differently when diagnosed and treated for a blood cancer.

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.