Acute lymphoblastic leukaemia: Teenagers and young adults

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

If you’re looking for information about ALL in people of all ages, please see our general ALL 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 fight infection (white cells) 
• carry oxygen from the lungs around the body (red blood cells) 
• stop cuts bleeding by clotting blood (platelets)

Symptoms

Many of the symptoms of ALL 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 – 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 visual disturbance

There can be other reasons you may have these symptoms. But if you are worried that you may have ALL, you should speak to your GP. They'll examine you and refer you to a hospital if they think you need to see a specialist doctor.

Causes

It's not known exactly what causes ALL. Research is going on to try to find out.

Young people with some genetic conditions, such as Down's syndrome or Li-Fraumeni syndrome, are at an increased risk of developing ALL. A genetic condition is something you are born with.

If you're worried about ALL 

If you think you have some of the symptoms of ALL you should speak to your GP. They can talk to you about your symptoms and arrange any tests they think you might need.

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

Leukaemia is a cancer of the white blood cells. 

All blood cells are made in the bone marrow, which is like a blood cell factory inside 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 3 main types of blood cells:

• white blood cells – which help fight infection
• red blood cells – which carry oxygen from the lungs around the body
• platelets – which clot blood to stop cuts bleeding

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:

• acute myeloid leukaemia (AML) is leukaemia that starts from abnormal myeloid cells
• acute lymphoblastic leukaemia (ALL) is leukaemia that starts from abnormal lymphoblasts

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 information about:

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

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

It’s important to remember that the symptoms of ALL can be caused by lots of different things. But you should go to your GP if you’re worried. They can talk to you about your symptoms and arrange any tests they think you might need.

Visiting your GP

Your GP will examine you and arrange for you to have blood tests. There can be different reasons for your symptoms, so you’ll need a blood test to help diagnose acute lymphoblastic leukaemia (ALL). If you have ALL, 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 problems.

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 to look at the changes in the leukaemia cells and help the doctors decide on the best treatment for you
• bone marrow test – to count the numbers of leukaemia cells in the bone marrow and get 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

If you have ALL, you might need a few more tests to check how your body is working in general. These could be blood tests, or an ultrasound scan of the tummy (abdomen) to look at your liver, spleen and kidneys, and an echocardiogram (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 Macmillan cancer support specialist on their free helpline.

We also have more information about:

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

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

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

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

ALL is treated in 3 phases:

• getting rid of the leukaemia – remission induction
• keeping the leukaemia away – consolidation and delayed intensification therapy
• keeping the leukaemia away long-term – continuing or maintenance therapy

You usually start chemotherapy pretty quickly after finding out that you have ALL.

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 teenagers 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.    

You’ll be given chemotherapy as tablets, by injection and into your bloodstream (intravenously). You’ll also be given chemotherapy into the fluid around the spinal cord to make sure the leukaemia cells can’t hide there. This is called central nervous system (CNS) therapy. It's also known as intrathecal therapy.

You’ll have a ‘line’ put in to one of your main veins to make it easier for you to have intravenous treatment. Your nurses and doctors can also use the line to take blood samples for blood tests. There are different kinds of lines.

Having chemotherapy 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 stop you feeling 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 or coming up to hospital for clinics and treatment 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. It can also help to talk to any new friends you’ve made who are going through similar experiences to you.

We have more information about chemotherapy that has been written for people of all ages, not just teens and young adults. 

Getting rid of the leukaemia (remission induction)

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

This type of treatment involves:

• chemotherapy to kill the leukaemia cells (including CNS therapy)
• steroids to help the chemotherapy work
• drugs (allopurinol or rasburicase) to help protect your kidneys from problems that can happen when lots of leukaemia cells are destroyed at once
• another tablet (for example ranitidine or lansoprazole) to stop indigestion or ulcers

You need to stay in hospital during this phase of your treatment so the doctors can check how things are going.

Treatment to get you into remission takes about 5 weeks, sometimes a bit longer. Being in hospital that long can be really difficult at times. If you're struggling to cope, try and talk to your friends, family, doctors and nurses. It’s important not to bottle up your feelings otherwise your might end up finding it hard to cope. Drugs you may be given include:

• vincristine
• asparaginase
• daunorubicin
• mercaptopurine
• methotrexate

Side effects

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

Central nervous system therapy

Chemotherapy given as tablets or into the blood can reach most places in your body. But it isn’t good at getting into the brain or spinal cord (called the central nervous system or CNS). So you’ll be given treatment into the fluid that goes around the CNS to target any leukaemia cells that might be hiding there. This is called CNS therapy.

CNS therapy is given during remission induction treatment (to get rid of the leukaemia) and continues right until the end of maintenance therapy.

Chemotherapy is given into the fluid, called cerebrospinal fluid or CSF, around your spinal cord. Drug treatment given into the CSF is called intrathecal therapy.

It’s a bit like having a lumbar puncture but with chemotherapy added. A doctor puts a needle into the space between 2 small bones (vertebrae) near the bottom of your spine. Then they inject chemotherapy into the CSF. The CSF will carry the chemotherapy around your CNS so it can reach any leukaemia cells that might be there.

The chemotherapy drug used for CNS therapy is called methotrexate.

Side effects

Most people don’t have side effects after having intrathecal methotrexate. But occasionally it can cause headaches, dizziness, tiredness or blurry vision for a few hours. Rarely other side effects like seizures (fits), weakness of your arms or legs and changes in how awake you are can happen. But these almost always go away completely and you can still have the intrathecal injections in the future.

Keeping leukaemia away

This treatment is called consolidation and delayed intensification therapy. When you’re in remission, it means the doctors can’t see any leukaemia cells in your blood or bone marrow samples when they check them under the microscope. But there may still be leukaemia cells hiding in your body, so you need further treatment to get rid of these cells.

You’ll be given different types of chemotherapy drugs. This is so the leukaemia cells don't have a chance to get used to them (which is called drug resistance).

This phase of treatment takes about 5 to 6 months. Most of the treatment can be given as an outpatient but you might need to stay in hospital for some parts of it.

Drugs you may be given include:

• cyclophosphamide
• cytarabine (ara-C)
• mercaptopurine
• methotrexate
• vincristine
• asparaginase
• doxorubicin

Side effects

Chemotherapy does cause side effects. There is information about the specific ones in Macmillan's chemotherapy section.

Keeping the leukaemia away long term (maintenance therapy)

This treatment is given to prevent the leukaemia from returning (known as relapse). The chemotherapy is given in low doses. You have it as an outpatient so you can keep doing all your normal, everyday activities when you’re having maintenance therapy.

Maintenance therapy is given in 12-week cycles.

You’ll have:

• mercaptopurine tablets each day
• methotrexate tablets once a week
• steroid tablets for 5 days every 4 weeks
• vincristine chemotherapy every 4 weeks
• methotrexate chemotherapy into your cerebrospinal fluid (CSF) every 12 weeks

At the moment, boys have just over 3 years of maintenance therapy and girls have just over 2 years. This is because it takes a bit longer in boys to get rid of any remaining leukaemia cells.

During this time, you'll have regular check-ups – usually every week or two – to check if your drug doses need to be adjusted and to make sure you're OK. Very often, things like blood tests can be done at your GP practice or at home by a district nurse. Ask your doctor or nurse about arranging this.