Acute myeloid leukaemia

What causes acute myeloid leukaemia (AML)?

Doctors do not know exactly what causes AML, though research is ongoing to learn more.

Certain things may raise a person's risk of developing it.

Age

AML is more common in people aged 60 and over.

Diagnosing acute myeloid leukaemia (AML)

Some people are diagnosed with AML after being taken to hospital with symptoms that developed quickly. Others see their GP about symptoms.

If it’s possible you have leukaemia, you’ll see a doctor (haematologist) who specialises in treating blood problems. At the hospital, the haematologist and specialist nurse will talk to you about the tests you need.

If you think you may be pregnant, let your doctor know. Some tests can be harmful to an unborn baby. It’s important to talk to your doctor so they can plan your care safely.

To diagnose AML, your haematologist will arrange tests your blood and bone marrow to check for signs of leukaemia cells. Further tests are done to find out more about the leukaemia cells.

Types of tests

Tests for AML include the following.

Blood tests

You’ll have blood tests to check the numbers of the different types of cells in your blood (full blood count), and to look for leukaemia cells.

Bone marrow biopsy

A bone marrow biopsy is when a doctor or nurse takes a small sample of bone marrow, usually from the back of the hip bone (pelvis). The sample is sent to a laboratory to be checked for abnormal cells.

Immunophenotyping

Immunophenotyping looks for specific proteins on the surface of leukaemia cells. It helps identify the type of leukaemia and the type of blood cell (B or T cell) that has become abnormal.

This test can also be used to look for very small numbers of leukaemia cells during, and at the end of treatment.

Cytogenetics and molecular tests

Different tests look for gene changes (mutations) inside the leukaemia cells. Cytogenetics studies chromosomes, which carry the genetic information for each of our cells.

The results tell your doctor the AML subtype you have and which drug treatments are likely to work well for you.

Further tests

You may have the following tests.

G-banding

G-banding is when genetic material from a leukaemia cell is coloured using a dye that stains the chromosomes. The chromosomes are then examined using a special microscope.

FISH (fluorescence in situ hybridisation)

FISH looks for specific gene changes that may not be seen with G-banding. FISH looks at about 200 cells.

PCR (polymerase chain reaction)

PCR is a very sensitive test that looks for specific gene changes that can’t be seen under a microscope. It looks at a million or more cells.

This test can also be used to look for very small amounts of leukaemia during, and at the end of treatment.

Next-generation sequencing (NGS)

NGSs are techniques that allow doctors to quickly test for many different gene changes in the leukaemia cells at the same time.

It can help doctors find different markers or proteins that are helping the leukaemia cells grow and find drugs to block this. NGS looks at about a million or more cells.

Tests after diagnosis

After your diagnosis you may have further tests.

Tests to check your general health

Tests to check your general health will include:

• X-rays – to check your lungs and heart health
• heart tests – like an ECG (echocardiogram)

You may also have blood tests to check how your liver and kidneys are working, or to tests for infections, like HIV and hepatitis.

Tissue (HLA) typing

If you might need a donor stem cell transplant as part of your treatment, you’ll have a blood test to find out your tissue type. The doctors use this to look for a person whose stem cells will be a suitable match for you (a donor).

Lumbar puncture

A lumbar puncture checks for leukaemia cells in the fluid around the brain and spinal cord.

The doctor will put a thin needle into the lower spine and remove a sample of this fluid to send to the laboratory for testing. You don’t usually need a lumbar puncture at diagnosis but some people may have it done later.

Previous chemotherapy and radiotherapy

Having had certain types of chemotherapy or radiotherapy in the past may increase the risk of AML. This is called secondary leukaemia or treatment-related AML (t-AML).

Other blood cancers

People with certain other blood cancers that affect the bone marrow have a higher risk of developing AML. This includes:

• myelodysplasia – also called MDS or myelodysplastic syndrome
• myeloproliferative neoplasms (MPNs) – which include essential thrombocythaemia (ET), polycythaemia vera, and myelofibrosis

Rarely, chronic myeloid leukaemia (CML) may change into AML.

Genetic conditions

People with certain genetic conditions have a higher risk of developing leukaemia. These include Down’s syndrome and Fanconi’s anaemia.

High levels of radiation

Being exposed to very high radiation levels increases the risk of developing AML. For example, this might be after a nuclear accident. In the UK, it’s very unlikely anyone would be exposed to radiation levels high enough to increase their risk.

In certain parts of the UK, a natural gas called radon can pass from the soil into the foundations of buildings. Exposure to high levels of radon isn’t common. It’s not a risk factor for AML.

Exposure to chemicals

Rarely, AML is diagnosed in people who have had long-term exposure to certain chemicals. This is usually people who have worked in jobs that involve the chemical benzene.

In the UK, exposure to benzene in the environment and at work is now regulated to minimise its risk to health.

Smoking

Smoking can increase the risk of AML. This may be because there is benzene in tobacco.

Family history

Sometimes AML or another blood cancer affects several relatives in a family. If you’re worried about leukaemia in your family, talk to your GP or specialist doctor.

Treatment for acute myeloid leukaemia (AML)

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

The aim of treatment for AML is to get rid of the leukaemia cells as quickly as possible, so your bone marrow can work normally again.

Treatment usually starts as soon as possible after diagnosis. You may have your treatment as part of a clinical trials.

Your doctor will explain the different treatments and their advantages and disadvantages. They’ll also talk to you about things to think about when making treatment decisions.

Your treatment plan

Your treatment plan can depend on the type of AML you have and your general health. You may have intensive or non-intensive treatment.

Intensive treatment uses higher doses of chemotherapy to try to cure AML. You have it in 2 phases:

• intensive treatment – to get rid of the leukaemia cells in your blood and bone marrow (called remission)
• non-intensive treatment – to get rid of any remaining leukaemia cells and reduce the risk of the leukaemia coming back

You have some treatment as an inpatient in hospital, usually during induction.

If you have acute promyelocytic leukaemia (APL) you have different drugs. They may be given on their own or with chemotherapy.

Non-intensive treatment uses lower doses of chemotherapy or other drugs to control AML for as long as possible. It has less risk of serious side effects. You may have some treatments as an outpatient.

Before treatment starts, you’ll have a central line or PICC line put in to give you chemotherapy and other treatments.

Your fertility

Your doctor will explain if your treatment may affect whether you can get pregnant or make someone pregnant. Some people may be able to have fertility preservation before treatment. As treatment needs to start quickly, this isn’t always possible.

Tests during treatment

During treatment you’ll have blood tests and samples of your bone marrow taken to check for leukaemia cells. The results tell your doctor how well your treatment is working. It also helps them decide what treatment you may need next to give you the best chance of a cure.

If your test results show very small numbers of leukaemia cells (minimal residual disease) or none, your doctor will say you’re in remission.

Treatment options for AML

Treatments for AML include the following.

Chemotherapy

Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy the leukaemia cells. This is the main treatment for AML.

You’ll usually have 2 or more chemotherapy drugs, sometimes along with a targeted therapy drug.

Targeted therapy

Targeted therapy drugs target something that’s helping leukaemia cells grow and survive. Different drugs may be used.

You might have gemtuzumab ozogamicin if tests show the leukaemia cells make too much of a protein called CD33. It’s given with chemotherapy as part of the first treatment for AML.

These drugs may be used if tests show the leukaemia cells have a gene change called an FLT3 mutation.

Midostaurin (Rydapt®) is given between cycles of chemotherapy. You may also have it on its own for up to a year

Gilteritinib (Xospata®) might be given if AML doesn’t respond to other treatments or comes back.

Another drug called venetoclax might be used if the leukaemia cells make too much of protein called BCL2. You usually have it with less intensive chemotherapy.

Other targeted drugs might be used if AML doesn’t respond to other treatments or comes back

ATRA or arsenic trioxide

If you have a type of AML called acute promyelocytic leukaemia (APL), your treatment will include drugs called:

• ATRA (All Trans-Retinoic Acid)
• arsenic trioxide (ATO, Trisenox®)

You may have them on their own or with chemotherapy.

A stem cell transplant

A stem cell transplant using donor stem cells may be done to reduce the risk of AML coming back, or if AML comes back. You have this when you are in remission depending on:

• the risk of AML coming back
• whether a donor is available

This treatment isn’t suitable or necessary for everyone. It can have serious risks.

Supportive treatments

Leukaemia and its treatment causes symptoms and side effects. Your doctor and nurses will monitor these.

They’ll give you supportive treatments to prevent or manage them. This may include having:

• drugs – like antibiotics, antiviral and antifungal drugs to treat or prevent different types of infections
• a blood transfusion – if your red blood cells are low this will increase your energy levels and reduce breathlessness
• a platelet transfusion – if your platelets are low this will reduce your risk of problems with bleeding
• drugs called growth factors – may be given to encourage the bone marrow to make white bloods cells

Macmillan Cancer Support have more information about treatment for AML.

Managing side effects and recovery

It’s important to look after yourself during treatment and while you recover. Some side effects may take months to improve.

While your blood cells are still recovering, you’ll need to avoid possible risks of infection.

After treatment, you’ll also be advised to avoid some vaccines that aren’t safe to have until your immune system recovers. Your doctor will explain more about this.

How quickly you get back to doing the things you did before, like socialising, work or college, depends on how your blood cell levels recover.

Macmillan Cancer Support have more information about looking after yourself during treatment and recovery.

Sex

Leukaemia and its treatments may mean you feel too unwell or tired for sex.

If you have low platelets, your doctor may advise you to avoid penetrative sex until they recover.

Changes, like hair loss, may also affect how you think and feel about your body (body image). Usually, difficulties slowly improve as you recover.

Even if your treatment may cause infertility, it’s important to use contraception during treatment and for several months after it.

Macmillan Cancer Support have more information about sex during and after treatment.

After acute myeloid leukaemia (AML) treatment

After your treatment, you’ll have regular check-ups which continue for several years. Your doctor will ask you how you have been feeling and if you have any new or ongoing side effects.

You’ll have regular blood tests to check the number of normal cells in your blood. You may also have bone marrow samples taken to check for signs of leukaemia. Sometimes you may need other tests, such as X-rays or scans.

Many people find that they get very anxious before these appointments. This is normal. It may help to get support from family and friends.

If you have any problems, or notice any new symptoms between appointments, talk to your doctor or specialist nurse as soon as possible. Don’t wait for your next appointment.

Macmillan Cancer Support have more information on coping with treatment for acute leukaemia (leukemia).

If AML comes back

If AML comes back after treatment, it may be possible to have more treatment with chemotherapy and targeted or immunotherapy drugs. The aim is to get a second remission.

Some people go on to have a stem cell transplant when they are in remission again.

Possible long term effects of treatment

AML treatment can sometimes cause side effects that are permanent or happen months or years later. They may include:

• infertility
• early menopause
• an increased risk of heart problems later in life

These will not happen to everyone. Your doctor or nurse can explain how likely they are to affect you. They may give you advice about ways to prevent or manage long-term effects.

Macmillan Cancer Support have more information about possible long-term or late effects of AML treatment.

Wellbeing and recovery

Even if you already have a healthy lifestyle, you may choose to make some positive lifestyle changes after treatment.

Making small changes like eating well and keeping active can improve your health and wellbeing and help your body recover.

Getting support

Everyone has their own way of dealing with illness and the different emotions they experience. You may find it helpful to talk things over with family and friends or your doctor or nurse.

Macmillan Cancer Support also has further information to support you. You can:

• phone the Macmillan Support Line on 0808 808 00 00
• chat to Macmillan specialists online
• use the acute myeloid leukaemia (AML) forum – you can talk to others affected by AML, ask questions and share your experience

Other organisations who offer information and support include:

• African Caribbean Leukaemia Trust (ACLT) – offers support for people from ethnic minorities affected by leukaemia and related illnesses
• Anthony Nolan –the UK’s largest stem cell and bone marrow register
• Blood Cancer UK –a blood cancer research charity that provides information and support on any type of blood cancer

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