Acute myeloid leukaemia

Acute myeloid leukaemia (also called AML or AML leukemia) is a cancer of the blood cells.

If you have leukaemia, your body makes some abnormal blood cells. These leukaemia cells don't behave like healthy blood cells.

"Acute" means the illness develops quickly and needs to be treated straight away.

AML is rare. Around 3,200 people in the UK are diagnosed with it each year. It can develop at any age, but it's more common in people aged 60 and over.

Macmillan Cancer Support, a UK charity, has separate information about other types of leukaemia.

Your blood cells are made in the bone marrow, the soft tissue inside your bones. Every one of them grows from a stem cell in the bone marrow.

There are 2 types of blood stem cell:

• myeloid stem cells, which make red blood cells, platelets and other types of white blood cell. Acute myeloid leukaemia (AML) affects these myeloid stem cells
• lymphoid stem cells, which make a type of white blood cell called lymphocytes

The stem cell divides to make an early stage of the blood cell, called a blast. Blasts usually stay in the bone marrow until they have fully developed. Once that happens, they move into your blood and do different jobs, including:

• white blood cells help fight and prevent infection
• red blood cells carry oxygen from your lungs to all the cells in your body
• platelets help the blood to clot and prevent bleeding and bruising.

Normally, myeloid stem cells make blasts, and these develop into healthy blood cells. In acute myeloid leukaemia (AML), though, some of the blast cells are abnormal and don't develop fully. These are the leukaemia cells.

Leukaemia cells can't do the job of a normal blood cell. They also fill up the bone marrow, so there isn't enough space to make the usual numbers of healthy white blood cells, red blood cells and platelets your body needs.

The levels of these cells in your blood are measured in a test called a full blood count (FBC).

Macmillan Cancer Support have more detailed information about the blood and bone marrow. This includes what the levels of different blood cells usually are.

Acute myeloid leukaemia (AML) isn't just one disease. Doctors group it into different subtypes, and to do that they run several tests on the leukaemia cells, both to find the type and to look for gene changes inside them.

The subtype depends on a few things:

• the type of blood cells affected
• gene changes inside the leukaemia cells
• whether you had a blood disorder called myelodysplasia before developing AML
• whether the AML is linked to previous chemotherapy treatment (called treatment-related AML or t-AML)

Knowing the subtype of AML may affect the treatment you have. That said, most types of AML are treated in a similar way.

Most symptoms of acute leukaemia come from leukaemia cells filling the bone marrow. There isn't enough space left to make the usual numbers of healthy blood cells your body needs to support it.

It's important to contact your doctor if you notice any of the following:

• swollen lymph nodes (lumps in your neck, armpits or groins), especially if they remain swollen for 6 weeks or more
• fatigue
• drenching night sweats
• rash or itchy skin that's unexplained
• paleness
• bruising or bleeding with no obvious cause
• losing weight without trying
• new shortness of breath
• infections that are persistent or keep coming back after treatment
• pain in your bones or abdomen (tummy)

In most cases these symptoms are a sign of something less serious than cancer. Still, if you have unusual or persistent symptoms, it's always best to see your doctor and get checked as soon as possible.

Doctors don't know what causes acute myeloid leukaemia (AML), though research is still going on to learn more about it. There are some things that may raise the risk of developing AML.

Acute myeloid leukaemia (AML) is more common in people aged 60 and over.

If you have had certain types of chemotherapy or radiotherapy in the past, your risk of acute myeloid leukaemia (AML) may be higher. Doctors call this secondary leukaemia, or treatment-related AML (t-AML).

People who have certain other blood cancers that affect the bone marrow are at higher risk of developing acute myeloid leukaemia (AML). These include:

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

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

Some people are born with a genetic condition that raises their risk of leukaemia. Down's syndrome and Fanconi's anaemia are two examples.

Being exposed to very high levels of radiation raises the risk of acute myeloid leukaemia (AML). This could happen after a nuclear accident, for example. Most people are very unlikely to be exposed to radiation high enough to raise their risk.

In some places, a natural gas called radon can pass from the soil into the foundations of buildings. Exposure to high levels of radon isn't common, and it's not a risk factor for AML.

Acute myeloid leukaemia (AML) is only rarely diagnosed in people who have been exposed to certain chemicals over a long time. Usually these are people who have worked in jobs that involve the chemical benzene.

Smoking can raise your risk of acute myeloid leukaemia (AML). The reason may be the benzene found in tobacco.

Acute myeloid leukaemia (AML) or another blood cancer can sometimes affect several relatives in the same family. If you're worried about leukaemia in your family, talk to your doctor or a specialist doctor.

Some people are taken to hospital because their symptoms came on quickly, and that is how they learn they have acute myeloid leukaemia (AML). Others notice symptoms and go to see their doctor.

If leukaemia is possible, you'll be seen by a haematologist, a doctor who specialises in treating blood problems. At the hospital, the haematologist and a specialist nurse will explain which tests you need.

If you think you may be pregnant, tell your doctor. Some tests can harm an unborn baby, so your doctor needs to know and can plan your care safely.

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

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

In a bone marrow biopsy, a doctor or nurse takes a small sample of bone marrow, usually from the back of the hip bone (pelvis). The sample goes to a laboratory, where it is checked for abnormal cells.

Immunophenotyping is a test that looks for specific proteins on the surface of leukaemia cells. In acute myeloid leukaemia, it helps your doctors identify the type of leukaemia, and the type of blood cell (B or T cell) that has become abnormal.

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

Several tests look for gene changes (mutations) inside the leukaemia cells in acute myeloid leukaemia (AML). One of them, cytogenetics, studies the chromosomes, which carry the genetic information for each of our cells.

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

G-banding is a test used in acute myeloid leukaemia. A sample of genetic material is taken from a leukaemia cell and coloured with a dye that stains the chromosomes. The chromosomes are then looked at under a special microscope.

FISH is a test that looks for specific gene changes in acute myeloid leukaemia that may not show up with G-banding. It looks at about 200 cells.

PCR is a very sensitive test used in acute myeloid leukaemia. It looks for specific gene changes that can't be seen under a microscope, and it checks a million or more cells to do so.

Doctors can also use PCR to pick up very small amounts of leukaemia during treatment and at the end of it.

Next-generation sequencing (NGS) lets doctors test the leukaemia cells for many different gene changes quickly, and all at the same time.

This can help doctors find the markers or proteins that are helping the acute myeloid leukaemia cells grow, and then find drugs that block them. NGS looks at about a million or more cells.

Your general health will be checked with a few tests, including:

• 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 test for infections, like HIV and hepatitis.

If your treatment for acute myeloid leukaemia might include a donor stem cell transplant, you'll have a blood test to find out your tissue type. The doctors use the result to look for a person whose stem cells will be a suitable match for you (a donor).

A lumbar puncture is a test that checks for leukaemia cells in the fluid around your brain and spinal cord. The doctor puts a thin needle into your lower spine and takes out a small sample of this fluid. The sample then goes to the laboratory for testing.

If you have acute myeloid leukaemia, you don't usually need a lumbar puncture when the diagnosis is made, but some people may have it done later.

A team of specialists will meet to discuss the best treatment for you with acute myeloid leukaemia (AML). This team is called a multidisciplinary team (MDT).

The aim of treatment 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 trial.

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

Your treatment plan for acute myeloid leukaemia (AML) 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 (this is 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 of this 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 carries 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. This is how you'll be given chemotherapy and other treatments.

Your doctor will tell you whether the treatment for acute myeloid leukaemia could affect your chance of getting pregnant or making someone pregnant. Some people can have fertility preservation before treatment starts. But treatment has to begin quickly, so this isn't always possible.

During treatment for acute myeloid leukaemia, you'll have blood tests, and samples of your bone marrow will be taken, to check for leukaemia cells. The results tell your doctor how well the treatment is working. They also help the doctor decide what treatment you may need next, so that you have the best chance of a cure.

If your tests show none of these cells, or only very small numbers of them (this is called minimal residual disease), your doctor will say you're in remission.

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

You'll usually be given 2 or more chemotherapy drugs, and sometimes a targeted therapy drug as well.

Targeted therapy drugs work on something that helps acute myeloid leukaemia (AML) 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. You have it together with chemotherapy as part of the first treatment for AML.

Other 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, venetoclax, might be used if the leukaemia cells make too much of a 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.

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

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

You may have them on their own or with chemotherapy.

Doctors may suggest a stem cell transplant using donor stem cells to lower the risk of acute myeloid leukaemia (AML) coming back, or to treat it if it does come back. You have the transplant when you are in remission, and whether you have it depends on:

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

This treatment isn't suitable or necessary for everyone, and it can carry serious risks.

Acute myeloid leukaemia (AML) and its treatment cause symptoms and side effects. Your doctor and nurses will keep a watch on 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, because if your red blood cells are low, this will increase your energy levels and reduce breathlessness
• a platelet transfusion, because if your platelets are low, this will reduce your risk of problems with bleeding
• drugs called growth factors, which may be given to encourage the bone marrow to make white blood cells

Macmillan Cancer Support, a UK charity, has more information about treatment for AML.

Acute myeloid leukaemia and its treatments may leave you feeling too unwell or tired for sex. If your platelets are low, your doctor may advise you to avoid penetrative sex until they recover. Changes like hair loss can also affect how you think and feel about your body (your body image). Usually these 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 has more information about sex during and after treatment.

After your treatment, you'll have regular check-ups for several years. Your doctor will ask how you've been feeling and whether 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 look for signs of leukaemia. Sometimes you may need other tests, such as X-rays or scans.

Many people get very anxious before these appointments. This is normal, and 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 has more information on coping with treatment for acute leukaemia (leukemia).

If acute myeloid leukaemia (AML) comes back after treatment, more treatment may still be possible. This can include chemotherapy and targeted or immunotherapy drugs. The aim is to get a second remission.

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

Even if you already live a healthy life, you may want to make a few positive changes once your treatment for acute myeloid leukaemia is over. Small things, like eating well and staying active, can improve your health and wellbeing, and they can help your body recover.