Acute lymphoblastic leukaemia (ALL)

We do not know what causes ALL, but there is research happening to try to find out. Like other cancers, ALL is not infectious. You cannot catch it from someone and you cannot pass it on.

Some young people with genetic conditions have a higher risk of ALL. A genetic condition is something you are born with, such as Down’s syndrome. Children of parents who smoke in the home also have a higher risk of ALL. Having chemotherapy or radiotherapy as a child can also increase your risk of developing ALL when you are older.

Most ALL symptoms are caused by:

• too many immature cells in the bone marrow
• too few normal blood cells in your blood.

Symptoms can include:

• Looking paler than usual, feeling tired or becoming breathless easily. This is due to having too few red blood cells (anaemia).
• Having regular headaches or feeling generally unwell, perhaps with a sore throat or mouth.
• Bruising or bleeding more easily, without any obvious cause. You may have bleeding gums, nosebleeds or heavy bleeding during your period. This is caused by a lack of platelets.
• Having lots of infections. This is because of a lack of healthy white blood cells to fight infection.
• Having painful joints and bones.
• Having swollen glands (lymph nodes) in your neck, under your arm or in your groin.
• Having a fever and sweats. You may have a high temperature without any obvious cause, such as an infection.

Some people find out they have leukaemia through a routine blood test, before they have any symptoms.

Symptoms may appear very quickly over a few weeks. If you have any of these symptoms you should ask your doctor to check them. But remember that other illnesses could be causing them. The cause could be less serious than leukaemia.

If you are worried about ALL

If you think you have any of the symptoms of ALL, you should go to your GP. They will talk to you about your symptoms, examine you and arrange tests or refer you to a specialist. Remember that other things may be causing the symptoms. But it is important to get checked if you are worried.

It is important to remember that lots of different things can be causing symptoms of leukaemia. But you should visit your GP if you are worried. They can talk to you about your symptoms and arrange any tests you might need.

Visiting your GP

Your GP (family doctor) will examine you and arrange a blood test for you. The blood test might show that you could have leukaemia. If this happens, your GP will refer you to a specialist doctor at the hospital. The specialist doctor is called a haematologist. They treat people with blood problems.

At the hospital

The haematologist will examine you and ask you about your symptoms. They will also arrange for you to have some more tests. You may have:

• Blood tests. You have probably already had blood tests. But you will need more once you have seen the haematologist. These tests look at the number and type of leukaemia cells you have, and any changes in them. This helps doctors decide the best treatment for you.
• Bone marrow test. The doctors may take samples from your bone marrow. This shows the type of leukaemia you have. It gives doctors information they need to plan the best treatment for you.
• Lumbar puncture. The doctors may need to take a small sample of the fluid that surrounds your brain and spinal cord. This is called cerebrospinal fluid. They check the fluid for leukaemia cells.
• Chest x-ray. The doctors may need to see if there are any swollen lymph nodes (glands) in your chest.

If you have leukaemia, you might need more tests to check how your body is working generally. These could be:

• An ultrasound or CT scan of the tummy (abdomen). This is to check if leukaemia is affecting other parts of your body such as your liver, spleen and kidneys.
• An echocardiogram. This is an ultrasound of the heart to check how well your heart is working.

These may seem like lots of tests. But the tests give doctors important information that helps you get the best treatment.

Waiting for test results can be scary. But understanding more about tests can help you cope. It can also help to get support from your family and friends or your specialist nurse and doctor.

We have more information about tests and scans.

The main treatment for acute lymphoblastic leukaemia (ALL) is chemotherapy (chemo). This means you have anti-cancer drugs to destroy the leukaemia cells. You will also have drugs called steroids. These help the chemotherapy to work.

The aim of treatment for ALL is to get rid of leukaemia cells. This is so the bone marrow can work normally again.

The treatment can cause unpleasant side effects, so sometimes it may feel hard to deal with. But you will be in close contact with the hospital when you are most likely to feel unwell. The staff can 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 to help.

ALL treatment has three phases:

• getting rid of the leukaemia – this is called remission induction
• keeping leukaemia away – this includes three blocks of treatment called consolidation, interim maintenance and delayed intensification therapy
• stopping leukaemia from coming back long term – this is called continuing or maintenance therapy.

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

Sometimes, you may have the option of treatment for ALL as part of a cancer research trial. Cancer research trials try to find new and better treatments for cancer. The trials test new treatments, such as new chemotherapy drugs or targeted therapies. Or they may look at new ways of giving existing treatments.

Whether or not you take part in a cancer research trial is your decision. If you decide not to, you do not have to give a reason. But it can help to talk to the hospital staff about any questions or worries you have. This means they can give you the best advice. There will be no change in the way the staff treat you. They will offer you the usual treatment for your situation.

To begin with, you will be in hospital for your treatment. If you are 18 or younger, you will have treatment in a specialist Principal Treatment Centre (PTC) for teenagers and young adults (TYA). If you are 19 or older, you can go to a PTC. Or you can choose to go to another hospital called a TYA designated hospital, if it is closer to home.

More information about chemotherapy

You can have chemotherapy by:

• injection or a drip directly into a vein (intravenous chemotherapy)
• mouth, as tablets or capsules (oral chemotherapy)
• injection into the spinal fluid (intrathecal chemotherapy)
• injection into muscle (intramuscular)
• injection under the skin (subcutaneous).

Central lines

You might have a central line put into one of your main veins to make it easier for you to have treatment. A central line can stay in until the chemotherapy is over. This means you will not have a needle put into your arm every time you have chemotherapy. Your nurses and doctors can also use the central line to take blood samples for blood tests.

There are different kinds of central lines. The most common type is called a skin tunnelled central line. You may hear them called Hickman or Groshong lines.

Other types of central line include:

• an implantable port (portacath)
• a PICC line (peripherally inserted central catheter).

Intrathecal chemotherapy

In some people, leukaemia cells may travel into the cerebrospinal fluid (CSF). This is the fluid that surrounds the spine and brain. It is harder for chemotherapy drugs in the bloodstream to reach the brain and spinal cord. To treat these areas, it is more helpful to inject the drugs directly into the CSF. This is done through a lumbar puncture. Having chemotherapy in this way is called intrathecal chemotherapy.

You have a local anaesthetic in your lower back. This numbs the area so you don’t feel any pain. The doctor gently puts a needle into the fluid in the spine. They take a sample of the fluid. This can be checked to see if there are any leukaemia cells in it. The doctor then injects the drugs into the space around the spine. The drugs help destroy any leukaemia cells in the fluid.

Some people get a headache after this treatment. Your doctor or nurse will give you painkillers for this. It can help if you lie flat for a short time afterwards.

Getting rid of the leukaemia (remission induction)

In the first phase of treatment, you have chemotherapy to kill as many leukaemia cells as possible. The aim is to get you into remission. 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
• steroids to help the chemotherapy work
• other drugs to help treat or prevent side effects from the chemotherapy.

You need to stay in hospital during this phase of your treatment. This is so doctors can check you closely and help with side effects.

Treatment to get you into remission takes about 5 weeks, sometimes a bit longer.

After remission induction treatment, doctors use blood and bone marrow tests to check for leukaemia cells. If the tests cannot find any leukaemia cells, the doctor will say you are in remission.

Keeping leukaemia away (consolidation, interim maintenance and delayed intensification)

Sometimes very small amounts of leukaemia cells may still be in your body. But they cannot be found by checking blood or bone marrow samples. So if you are in remission, you still need further treatment to destroy as many leukaemia cells as possible.

This phase of treatment takes about 5 to 6 months. You can have most of the treatment as an outpatient. But you might need to stay in hospital for some parts of it.

Stopping leukaemia from coming back long term (maintenance therapy)

You have this treatment to stop the leukaemia coming back (relapsing). You will have low doses of chemotherapy as an outpatient. So you can keep doing all your usual day-to-day activities.

Maintenance therapy is given in 12-week cycles and lasts 2 to 3 years.

Young men have about 3 years of maintenance therapy. Young women have about 2 years. This is because it takes longer to get rid of any remaining leukaemia cells in men.

During this time, you will have regular check-ups with your doctor. You will usually have one a month. This is so they can make sure you are okay and check if they need to change your drug dose. Often, you can have things like blood tests at your GP surgery. Or a district nurse can come and do them at your home. Ask your doctor or nurse about arranging this.

The following chemotherapy drugs are used to treat ALL. They are used in different combinations. Your doctors and nurses can give you more information:

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

Side effects

Different chemotherapy drugs cause different side effects. Some people have a few side effects. Others may have more. Everyone is different.

Most side effects are short-term (temporary) and gradually stop after treatment finishes.

The most common short-term side effects are:

• risk of getting an infection
• bleeding and bruising
• losing your hair
• feeling sick
• tiredness.

Chemotherapy can also lower the number of red cells and platelets in your blood. Low numbers of red cells (called anaemia) can make you feel breathless and tired. Low numbers of platelets may cause bleeding and bruising. You will probably need blood and platelet transfusions to help stop this from happening.

Some people may have the option of having a stem cell transplant as part of their treatment. A stem cell transplant is when your bone marrow is replaced with bone marrow from a donor. This will give you a new, healthy bone marrow and your immune system can fight any remaining cancer cells.

You will usually only have this option if doctors think there is a high risk of the leukaemia coming back after chemotherapy.

More information about stem cell transplants

Treatment for ALL can affect your ability to get pregnant or make someone pregnant (your fertility). This is more likely if you have a stem cell transplant.

Before your treatment starts, your doctor and nurses will talk to you about how it might affect your fertility. They will explain what they can do to help preserve your fertility.

Young men may be able to store sperm before starting treatment. This is so it can be used later if they want to have children. Rarely, young women can store eggs or fertilised eggs (embryos) before chemotherapy. This is so they may be able to have children after treatment.

But treatment for leukaemia needs to start as soon as possible. Sometimes, there is not enough time to store sperm. Storing eggs or embryos is more complicated, so usually there isn’t enough time to store either of these.

We have more information about fertility in young men and women.

Having chemotherapy can be hard. But the staff looking after you will give you medicines to help you cope with any side effects. Being able to cope with side effects will mean you can stay well enough to have treatment. You will have medicines to stop you feeling sick and antibiotics to help prevent infections.

Being in hospital for long periods of time is sometimes difficult. Even when you are home, there will probably be times when you feel rough and times you feel better. If you are struggling to cope, try talking to your friends, family, doctors and nurses. It is important not to hide your feelings.

Being in hospital or coming to hospital for treatment can be frustrating. It is especially difficult when you miss out on school, college, university or work, or things your friends are doing. You could try talking to friends and family and see what they can do to help. It can also help to talk to any new friends you’ve made, who are going through similar experiences to you.