Acute lymphoblastic leukaemia

What causes acute lymphoblastic leukaemia (ALL)?

Doctors don't know the exact cause of ALL, but research is ongoing to learn more about it.

Different things called risk factors may increase the risk of developing ALL.

Some people may have a change in a gene that makes them more likely to develop ALL. More research is needed to understand this.

Genetic conditions

People with certain genetic conditions have a higher risk of developing ALL. These include:

• Down's syndrome
• Fanconi's anaemia
• Bloom's syndrome
• Ataxia-telangiectasia

ALL doesn't run in families (it's not inherited), so other people in your family are not at increased risk of getting it.

High levels of radiation

Being exposed to very high radiation levels, for example after a nuclear accident, increases the risk of developing ALL.

Exposure to high levels of a gas called radon, which can pass from the soil into buildings, isn't a risk factor for ALL.

Diagnosing acute lymphoblastic leukaemia (ALL)

Some people are diagnosed with ALL 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 ALL, your haematologist will test your blood and bone marrow to check for signs of leukaemia cells. Further tests are done to find out more about the leukaemia cells.

Tests for ALL 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. This is 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.

The 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

Cytogenetics and molecular tests look for gene changes (mutations) inside the leukaemia cells. This includes the Philadelphia chromosome (Ph+ ALL). Tests may include the following.

G-banding

G-banding is when the 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)

PRC 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.

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

Further tests

After your diagnosis, you may have further tests including the following.

Tests to check your general health

Tests to check your general health may 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.

Lumbar puncture

A lumbar puncture checks for leukaemia cells in the fluid around the brain and spinal cord. The doctor puts a thin needle into the lower spine and removes a sample of this fluid to send to the laboratory for testing.

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).

Treatment for acute lymphoblastic leukaemia (ALL)

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 ALL 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 things to think about when making treatment decisions.

Your treatment plan

Your treatment plan depends on:

• the type of ALL
• any gene changes (mutations) in the leukaemia cells
• if the leukaemia cells produce certain proteins

You usually have treatment in 3 phases:

• induction treatment – to get rid of the leukaemia cells in your blood and bone marrow (remission)
• consolidation treatment – to get rid of any remaining leukaemia cells in areas like the brain or spinal cord
• maintenance treatment – you take as tablets for 2 to 3 years to help prevent the leukaemia coming back

If you have other health problems, you can have less intensive treatment. It has less risk of serious side effects and may be easier to cope with.

To have your induction treatment, you’ll usually have a short thin tube called a cannula put into a vein.

Before you start consolidation treatment, you’ll have a central line or PICC line put in. These are 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 are in remission.

Treatment options for ALL

The main treatments for ALL include:

Chemotherapy

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

You’ll have most of the drugs through your line into a vein (intravenously). You take others by mouth as tablets.

You’ll also have chemotherapy into the fluid around your spine and brain (called intrathecal chemotherapy). You have it to prevent leukaemia cells spreading to the spine or brain, or to treat any leukaemia cells that may be there.

Steroids

Steroids are an important part of your treatment for ALL. They help destroy the leukaemia cells and make chemotherapy more effective.

You’ll start taking them a few days before your chemotherapy starts.

Steroids can cause side effects. But these will gradually disappear as the dose is reduced.

Targeted and immunotherapy drugs

Targeted therapy drugs target something in or around the leukaemia cell that’s helping it to grow.

If you have Ph + ALL, you’ll have a targeted drug called a tyrosine kinase inhibitor with chemotherapy.

Other drugs called monoclonal antibodies, which are a type of immunotherapy treatment, may be used depending on the type of ALL.

If you have B cell ALL you may have a drug called rituximab along with chemotherapy.

A treatment called CAR-T therapy is occasionally used in young people with B cell ALL.

A stem cell transplant

A stem cell transplant using donor stem cells may be done to reduce the risk of ALL coming back, or if ALL comes back.

You have this when you are in remission depending on:

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

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.

Supportive treatments 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 treating ALL.

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 in their information about looking after yourself during treatment and recovery.

After acute lymphoblastic leukaemia 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, like 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 (leukaemia).

If ALL comes back

If ALL comes back after treatment, you may have further treatment with chemotherapy. The aim is to get a second remission. Some people may be able to have a stem cell transplant from a donor.

Targeted or immunotherapy drugs may also be used. If you have Ph+ ALL, you’ll be offered a different TKI.

Occasionally CAR-T therapy could be a possible treatment option.

Possible long term effects of treatment

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

• infertility
• bone thinning
• 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 ALL 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.

Macmillan Cancer Support have more information on finishing cancer treatment.

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 lymphoblastic leukaemia (ALL) forum – you can talk to others affected by ALL, ask questions and share your experience

Other organisations who offer information and support include:

• ACLT (African Caribbean Leukaemia Trust) – 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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