Acute myeloid leukaemia: Teenagers and young adults

This section is for teenagers and young adults and is about a type of cancer called acute myeloid leukaemia (AML). The other main type of leukaemia that can affect teenagers and young adults is acute lymphoblastic leukaemia.

For information about AML in people of all ages, please see our general AML section.

Leukaemia is a cancer of the white blood cells. In leukaemia, the process for making new white blood cells gets out of control.

Immature white blood cells (called blasts) keep being made and build up in the bone marrow until there isn’t enough room for the bone marrow to make healthy white blood cells, red blood cells and platelets. The body needs these cells to:

• help us fight infection (white cells)
• carry oxygen from the lungs around our body (red blood cells)
• stop us bleeding when we cut ourselves by clotting our blood (platelets).

Symptoms

Many of the symptoms of AML are caused by having fewer than normal healthy blood cells in the body. Symptoms can include:

• looking paler than usual and feeling tired - because of too few red blood cells (anaemia)
• bruises or bleeding - you may bruise more easily and it could take longer for bleeding to stop, if you have less blood clotting cells (platelets) than normal
• infections - because there are too few mature white blood cells to fight infection
• aches and pains in your bones
• swollen glands (lymph nodes) in your neck, under your arm or in your groin
• feeling unwell and run down
• fever and sweats - you may have a high temperature without any obvious cause, such as an infection
• headaches and blurred vision - because of too many white blood cells
• breathlessness - because of too many white blood cells.

Causes

We don't know exactly what causes AML, but research is going on to try to find out. We do know some things might increase the risk of AML:

• Some genetic conditions, like Down's Syndrome. A genetic condition is something you are born with.
• Some non-cancerous conditions of the bone marrow, such as aplastic anaemia or myelodysplastic syndromes.

If you're worried about AML

If you think you might have any of the symptoms of AML, you should go to your GP. They'll talk to you about your symptoms, examine you and can arrange tests or refer you to see a specialist. Remember that the symptoms can be caused by other things, but it’s important to go and get checked if you are worried. 

To help you understand leukaemia, it can help to know a little about the blood and bone marrow.

Leukaemia is a cancer of the white blood cells. Knowing a bit about how blood cells are made in the body can help you to understand leukaemia and how it’s treated.

All blood cells are made in the bone marrow, which is like a blood cell factory inside our bones. A type of cell in the bone marrow, called a stem cell, can make any kind of blood cell your body needs.

There are three main types of blood cells:

• white blood cells – which help us fight infection
• red blood cells – which carry oxygen from the lungs around our body
• platelets – which clot our blood to stop us bleeding when we cut ourselves

The bone marrow normally makes millions of blood cells every day. To begin with, these new blood cells, called blasts, are not fully developed (they’re immature).

The main job of blast cells is to make more blood cells like themselves. They can’t do any of the jobs that mature blood cells can do, like carrying oxygen or fighting infection. Blast cells normally stay inside the bone marrow until they’ve matured into fully-developed blood cells.

Once blood cells are mature, they’re ready to do their jobs. They leave the bone marrow and go into the bloodstream, where they can be carried to wherever they’re needed.

How leukaemia develops

In leukaemia, the process for making new white blood cells gets out of control and immature white blood cells (blasts) keep being made.

They build up in the bone marrow until there isn’t enough room for the bone marrow to make healthy white cells, red cells and platelets.

Types of leukaemia

Leukaemia is a cancer of the white blood cells. Healthy white blood cells are made from two types of blood cells:

• lymphoblasts that make lymphocytes
• myeloid cells (myeloblasts) that make other types of white blood cells such as neutrophils.

Leukaemias are named after the type of white blood cell that has become abnormal and started growing out of control. The most common types in teenagers and young adults are AML and ALL:

• leukaemia that starts from abnormal myeloid cells is called acute myeloid leukaemia - or AML for short.
• leukaemia that starts from abnormal lymphoblasts is called acute lymphoblastic leukaemia (ALL).

There are other types of leukaemia that are more common in older people.

The information in this section is about ALL, but if you have a different type of leukaemia and want to know more, contact Macmillan.

We also have more info about:

• symptoms and causes of AML 
• having tests for AML 
• being treated for AML 

If you're looking for information about ALL in people of all ages, please see our general AML section.

You should see your GP as soon as possible if you think you have some of the symptoms of AML. But remember that the symptoms of AML can be caused by other things.

Visiting your GP

Your GP (family doctor) will examine you and arrange for you to have blood tests. There can be different reasons for your symptoms, so you’ll need to have a blood test to help diagnose acute myeloid leukaemia (AML). If you have AML, a blood test will usually find leukaemia cells and you'll be referred to a specialist at the hospital.

This specialist is called a haematologist and is a doctor who treats people with blood disorders.

At the hospital

The haematologist will examine you and ask you about your symptoms and any recent illnesses. They will also arrange for you to have some more tests. These may include:

• blood tests - you’ll need more blood tests even if you’ve had some already. These tests look at the changes in the leukaemia cells. This helps the doctors decide on the best treatment for you. You might hear the doctors calling these tests cytogenetics and immunophenotyping.
• bone marrow test - you’ll have samples taken from your bone marrow. The doctors will count the numbers of leukaemia cells in the bone marrow. They will also send samples for cytogenetic and immunophenotyping testing.
• lumbar puncture - a small sample of the fluid that surrounds your brain and spinal cord is taken to check for leukaemia cells.
• chest X-ray – this may also be done to see if there are any swollen lymph nodes (glands) in your chest.

Macmillan has more information on these and other tests.

If you have AML, you might need a few more tests to check how your body is working in general. These could be blood tests, an ultrasound scan of the tummy (abdomen) to look at your liver, spleen and kidneys, or an echocardiogram (which is an ultrasound of the heart).

This may seem like a lot of tests, but they give the doctors important information that will help them give you the right treatment.

Waiting for test results can be a scary time, but understanding a little about them - what will happen, how you'll feel and when you'll get the results - can help you cope. Thinking about how you feel and getting support from family, friends or your specialist nurse and doctor can also make it a bit easier. You could also talk to a cancer support specialist on Macmillan's free helpline.

We also have more info about:

• symptoms and causes of AML 
• being treated for AML
• leukaemia, blood cells and bone marrow  

If you're looking for information about AML in people of all ages, please see our general AML section.

The main treatment for acute myeloid leukaemia (AML) is chemotherapy (chemo). This means having anti-cancer drugs to destroy the leukaemia cells. You’ll also have drugs called steroids, which help the chemo to work.

The treatment for AML is pretty intensive at times and can cause unpleasant side effects. But you'll be in hospital when you’re most likely to feel unwell, and the staff can help if things get tough. Don’t feel you have to be brave. Be honest about how you're feeling with your doctors and nurses, and they can give you medicines to help you feel better.

There are different phases of treatment for AML:

• getting rid of the leukaemia - remission induction
• keeping the leukaemia away - consolidation and delayed intensification therapy
• central nervous system (CNS) therapy (mainly for teenagers under 16)

Very often, treatment is given as part of a clinical trial or research study, but it will be your decision whether to take part in the trial or not. Clinical trials help doctors to keep improving treatment for leukaemia.  

You usually start chemo pretty quickly after finding out that you have AML.

You'll be in hospital for your treatment to begin with. If you're 18 or younger, you'll be treated in a specialist Principal Treatment Centre (PTC) for teenage and young adults (TYA). If you're 19 or older, you'll be offered the choice of having treatment at the PTC or another hospital closer to home called a TYA designated hospital.

Most chemo for AML is given into the bloodstream (intravenously). So you’ll have a ‘line’ put into one of your main veins to make it easier for you to have intravenous chemo. There are different kinds of lines. You might have a central line (Hickman® or Groshong®), an implantable port (portacath), or a PICC line.

You’ll also be given chemo into the fluid around your spinal cord and brain. This is to get rid of any leukaemia cells that might be hiding there. This type of treatment is called central nervous system (CNS) therapy.

Having chemo can be hard, but the staff looking after you will give you medicines to help you cope with any side effects so you can stay strong enough to have treatment. And you’ll be given medicines to help you feel less sick and antibiotics to help prevent infections.

There will probably be times when you feel rough and other times when you’ll feel better. You might also feel upset, down or irritable. Talking to someone you trust can help you cope with these feelings.

Being in hospital for long periods can be frustrating, especially when you miss out on stuff happening at school, college, university or work or on things your friends are doing. You could try talking to your friends and family about this and see what they can do to help you.

Getting rid of the leukaemia (remission induction)

The first phase of your treatment is about getting rid of the leukaemia. You’ll be given chemo to kill as many leukaemia cells as possible. Remission means there is no sign of leukaemia cells in your blood or bone marrow.

You have chemo over a few days, then you have a few weeks off so that your body can recover from any side effects. The days you have the chemo and the rest period afterwards is called a cycle. You’ll usually have four cycles of chemotherapy overall with two courses in the induction phase. Some people might also need to have a bone marrow transplant. This normally happens after 2 cycles of chemotherapy.

You'll probably need to stay in hospital most of the time that you’re having remission induction. This is so that the doctors can check how things are going.

Chemo drugs

Drugs you may have include:

• cytarabine (Ara-C)
• daunorubicin, doxorubicin or idarubicin
• etoposide
• thioguanine

Side effects

Different chemo can cause different side effects. There is information about the specific ones in Macmillan's chemotherapy section.

As well as the chemo drugs, you’ll be given other drugs to:

• Help prevent you from feeling sick or being sick.
• Help prevent infections.
• Protect your kidneys. Sometimes, when lots of leukaemia cells are destroyed at once, it can cause kidney problems. You may have a drug called allopurinol or one called rasburicase.

You’ll probably also need blood and platelet transfusions to top up the numbers of red cells and platelets in your blood.

Chemo can cause side effects. Most of them are short-term (temporary) and gradually disappear once treatment stops. The most common side effects are:

• being more at risk of infections
• feeling sick
• hair loss
• a sore mouth

Sometimes side effects can be long-term. For example, some chemo treatments can affect fertility (your ability to have a baby). If you are a young man, you will be offered the chance to store sperm before chemotherapy is started. There may be other late effects of treatment and your specialist can talk to you about this.

Remission induction is pretty intense treatment and you’ll probably feel a bit wiped out sometimes. You’ll need to stay in hospital for most of the time and you might not have the energy to do much. You might feel fed up, tearful or irritable. It’s normal to feel like this. It's hard to be in hospital and you might worry about losing touch with your friends or falling behind at school or college. It can help to talk about this with a friend, doctor, nurse or counsellor.

Keeping the leukaemia away (post-remission treatment)

This phase of treatment is sometimes also called consolidation or intensification treatment. It’s given to prevent the leukaemia from returning (known as a relapse).

When you’re in remission, it means the doctors can’t see any leukaemia cells in your blood or bone marrow samples under the microscope. But there may still be leukaemia cells hiding in your body, so further treatment is needed to get rid of these cells.

You start post-remission treatment soon after you complete remission induction. You’ll usually have two courses of treatment. You might be given the same chemo drugs you’ve had before (perhaps at similar or higher doses) or you might be given different chemo drugs.

When your doctors decide what chemotherapy treatment plan to give you, they will take into account:

• how well your leukaemia responded to the first lot of treatment (remission induction)
• the results of the tests that were done when you were diagnosed

The following drugs may be used to treat you:

• cytarabine (ara-C)
• methotrexate

Central nervous system therapy (CNS)

You usually won’t need this treatment if you’re 16 or over. But if you’re under 16, you’ll probably have it.

CNS therapy is given to get rid of any leukaemia cells that might be in the brain or spinal cord. (The CNS or central nervous system is the name for the brain and spinal cord.)

CNS therapy involves giving chemotherapy into the fluid, called cerebrospinal fluid or CSF, around the spinal cord and brain.

It’s a bit like having a lumbar puncture but with chemo added. A doctor puts a needle into the space between two small bones (vertebrae) near the bottom of your spine. Then they inject chemo into the CSF. The CSF will carry the chemo around your CNS so it can reach any leukaemia cells that might be there.

You’ll have a lumbar puncture before you start treatment to check for leukaemia cells in the CSF.

If there is no sign of leukaemia cells, you’ll have two lots of CNS therapy, one after each cycle of remission induction therapy.

If there are leukaemia cells in the CSF, you’ll have CNS therapy twice a week until all traces of leukaemia cells in your CSF have gone. You’ll then have two more lots of CNS therapy just to make sure.

For CNS therapy for AML, you’ll have chemo drugs called methotrexate and cytarabine and a steroid called hydrocortisone.

Side effects

The most common side effect is feeling sick but you can be given anti-sickness treatment to help this. Rarer side effects include a headache, dizziness, tiredness or blurry vision for a few hours afterwards.

We also have more info about:

• symptoms and causes of AML 
• having tests for AML 
• leukaemia, blood cells and bone marrow 

If you're looking for information about AML in people of all ages, please see our general AML section.