Decisions about treatment for childhood acute lymphoblastic leukaemia (ALL)

Doctors plan your child’s treatment in one of the major children’s cancer centres. This is called the principal treatment centre (PTC). Your child has some of their treatment in this specialist centre, but some care takes place at a hospital closer to home. This hospital is called your:

• shared care hospital

• paediatric oncology shared care unit (POSCU)

Blood tests, dressing changes or other aspects of care might take place in your home.

After diagnosis children start treatment for ALL quickly. This is because ALL can cause serious problems quickly if it’s not treated as soon as possible.

Children's cancer centres have teams of specialists who know about childhood ALL and the best way to treat it. More than 90 out of 100 children (more than 90%) now survive childhood ALL.

The main treatment for ALL is chemotherapy.

Clinical trials

Most children having treatment for ALL have it as part of a clinical trial when one is available.

Chemotherapy usually works well for children and young adults with ALL. But we know from research that it is important to look at the risk of the leukaemia coming back after treatment (relapse) and plan treatment based on this risk. This means giving less treatment to people with a low risk of their leukaemia coming back. And giving more treatment to people with a higher risk of the leukaemia coming back.

To do this most children, teenagers and young adults have treatment as part of an international trial. The current study is called AllTogether-1.

Your child does not have to take part in the trial. They will still get standard treatment for ALL which we know works very well for most children.

AllTogether-1 will run for up to 6 years, so until about the middle of 2027.

How long does treatment last?

Treatment lasts just over 2 years after your child has finished the induction part of the trial. Induction lasts about 4 weeks.

For a small number of children the length of treatment will be different for those who have leukaemia that is at a very high risk of coming back after treatment. These children may need to have different treatments such as a stem cell transplant or CAR-T cell therapy. 

Your child will have most of their treatment as an outpatient. For their first treatment (induction) they will stay in hospital until they have recovered and it’s safe for them to go home. This might be after a couple of weeks. It’s hard to be precise but your child is likely to be in and out of hospital depending on how they cope with the treatment.

Your child will be an inpatient at certain points later on in their treatment if they are having:

• a stem cell transplant

• CAR-T cell therapy

• blinatumomab a type of targeted drug

• high dose methotrexate (a particular phase of chemotherapy)

Decisions about treatment

The specialist team make a treatment plan depending on a number of factors. These help your child’s doctors to decide on the best treatment group for your child based on the risk of their leukaemia coming back after treatment.

Some of these factors include:

• your child’s age (if they are under 12 months old or over 10 years old)
• the level of white blood cells in the blood when your child is diagnosed (doctors call this the white cell count)
• the type of cell the leukaemia started in
• if there are leukaemia cells in the fluid around the brain or spinal cord (cerebrospinal fluid)
• any genetic changes in the leukaemia cells themselves - rather than those inherited from parents
• if your child has a condition that makes them more susceptible to ALL such as Li-Fraumeni syndrome . However, Down syndrome is an exception to the rule with this current trial.
• if they have had cancer before

Doctors look for changes to chromosomes within the leukaemia cells themselves. One change leads to a type of leukaemia called Philadelphia positive (Ph +ve ALL). Around 3 to 5 out of every 100 children (around 3 to 5%) who get ALL have the Philadelphia chromosome change.

Children with Philadelphia positive ALL have slightly different treatment than we talk about here. They usually have a targeted cancer drug called Imatinib from day 15 of the start of their treatment. Your child’s doctor will go through in detail the treatment plan with you.

Below is a short video to explain what Philadelphia positive leukaemia is.

Measuring if treatment is working

Your child’s doctors will check how well treatment is working by doing another bone marrow aspirate . They do this on day 15 after starting treatment. Monitoring is then continued at different points through treatment. One way of measuring this is by looking for measurable residual disease (MRD).

Measurable residual disease (MRD)

Measurable residual disease is a sensitive test. It can see if there are leukaemia cells still in the bone marrow, even if it looks like the ALL has gone away (remission) using other tests.

Doctors expect to see some MRD early on in treatment. It doesn’t mean your child’s leukaemia won’t go away with further treatment. It looks at how well your child is responding to the treatment they are getting.

Depending on the results of the MRD test, and other tests, your child might have changes to their treatment. This is to make sure they are getting the best treatment they need.

Treatment phases

ALL treatment is in blocks (phases). Not all children have the same phases and these can differ depending on the risk group your child is in. It depends on your child’s risk group as to:

• how much chemotherapy your child has
• how strong the chemotherapy treatment is

Your child is monitored carefully to check that they are managing any side effects of treatment before the next phase of chemotherapy.

Below is an overview of the different phases of treatment for AllTogether-1 trial. You can find more detailed information about each phase further down the page.

The trial researchers are making other changes to treatment in the study. This will affect fewer children. The aim of these changes are to try and improve treatment by adding newer drugs, or newer ways of treating leukaemia to standard treatment.

Your child’s team will talk to you in detail if they think this part of the trial is suitable for them. Some of the changes Include:

Nelarabine

Your child might have nelarabine if they have high risk T-cell ALL. Nelarabine is a chemotherapy drug.

Blinatumomab

Your child might have a drug called blinatumomab if they have:

• Down syndrome (this part of the AllTogether-01 clinical trial is not currently recruiting)
• really bad side effects to standard treatment with chemotherapy
• B cell precursor ALL (BCP ALL) that is high risk

Having blinatumomab will also depend on:

• the result of your child’s measurable residual disease (MRD) test
• if your area or NHS trust provide this treatment

Inotuzumab ozogamicin

Researchers are looking at adding this drug before maintenance treatment, as some children might benefit from more treatment. Inotuzumab ozogamicin is also type of monoclonal antibody with a substance attached. It finds the leukaemia cells by targeting a certain protein on them. This protein is called CD22. It then delivers the substance directly into the leukaemia cells and kills them.

CAR T-cell therapy

Some people with high risk ALL might need a lot of chemotherapy and sometimes a stem cell transplant to get their leukaemia under control.

This trial would like to find new ways of treating high risk ALL, which are safe and work well. One potential new treatment is CAR T-cell therapy.

The study researchers are interested in finding people with high risk ALL who are able to join a different CAR T-cell study.

Your doctor will talk to you about different treatment options if CAR T-cell therapy is not available to you.

Induction treatment

The aim of the induction phase is to try and get rid of as many leukaemia cells as possible. It's also called remission induction. In remission means that there is no sign of the leukaemia in your child’s blood or bone marrow when looked at with a microscope.

The main treatments are:

• chemotherapy

• steroids

• targeted cancer drug (imatinib) for patients with certain genetic changes

Almost all children respond to induction chemotherapy. Children usually stay in hospital on the children’s cancer ward for the first couple of weeks while they start induction treatment. One carer can usually stay with them while they have this treatment.

Staying in hospital means their team can keep an eye on them for any problems or side effects of treatment. It also allows you to ask lots of questions and become more familiar with the team and treatment plan.

Your child has an MRD test at two points during the induction phase to check the response of the leukaemia to the treatment.

Consolidation 1

The aim of consolidation 1 treatment is to:

• lower the amount of any residual leukaemia – these are the cells that the doctors looked for using the MRD test
• prevent any leukaemia cells from spreading to the brain or spinal cord

The main treatment is chemotherapy. Consolidation 1 treatment takes about 6 weeks. Most children have consolidation treatment as an outpatient or on the daycare ward.

Consolidation 2 and 3

Consolidation 2 and 3 treatment aims to get rid of any remaining leukaemia cells. The main treatment for consolidations 2 and 3 is chemotherapy. It contains high amounts (doses) of a chemotherapy drug called methotrexate. This means your child stays in hospital for a few days for this part of the treatment.

Consolidation 2 and 3 treatment lasts about 7 weeks. 

Depending on your child's risk group a small number of children might not have consolidation 2 and 3. This is because they might go onto have a stem cell transplant or CAR T-cell therapy instead.

Delayed Intensification

Intensification treatment aims to use strong chemotherapy drugs when there are very few leukaemia cells left in the blood or bone marrow. This is to try and further reduce the amount of leukaemia left after the previous phases of treatment.

The main treatments are:

• chemotherapy
• steroids

The drugs your child has during the intensification phase are usually the same as in induction and consolidation. Your child has most of their treatment as an outpatient. But they might have to stay in hospital for some parts.

Maintenance

Maintenance is the longest phase of treatment and finishes 2 years after the end of induction. The treatment is much less intensive. It aims to keep the leukaemia away and prevent it from coming back (relapse). It mops up the few leukaemia cells that the other phases of treatment haven’t got rid of.

Your child has their maintenance treatment as an outpatient. The treatment is mainly chemotherapy. And treatment is tailored to your individual child’s blood counts.

High risk blocks

The high risk blocks use strong chemotherapy treatment. Your child has them after consolidation 1 if they have:

• a high number of leukaemia cells
• a high MRD result
• T-cell acute lymphoblastic leukaemia and do not respond to a chemotherapy drug called nelarabine

There are 3 high risk blocks and these last a total of around 10 weeks. Your child may have 2 rounds of high risk treatment.  

Stem cell transplant for childhood ALL

Your child might have a stem cell transplant as part of their treatment for ALL. This is the most intensive treatment that is available for children with ALL. It can cause severe side effects. Doctors only recommend a transplant for children where they think the benefits outweigh the risks of having a transplant.

A transplant means destroying as many leukaemia cells as possible and replacing these with healthy stem cells . 

Your child first has chemotherapy and other treatments such as radiotherapy. This prepares their body for the healthy stem cells. Your child then has the stem cells back (transplant). These stem cells make their way to the bone marrow. Here they make the blood cells they need to recover.

Supportive treatment

Your child will need other treatments and medicines to support them while they are treated for ALL. Supportive care helps to prevent infections and relieve the side effects of treatment. These can include:

• anti sickness medicines
• antibiotics, antifungals and antivirals to help prevent or treat infection
• red blood cell transfusions and platelet transfusions
• medicines to protect their kidneys from a condition called tumour lysis syndrome
• fluid through a drip to keep them hydrated
• mouth washes and painkillers to help with the any side effects of ulcers and sores in the mouth
• medicine to stop their periods if they have started them

Treating ALL that comes back or resists treatment

Sometimes tests still find leukaemia cells in the bone marrow while your child is having treatment. This means the leukaemia isn’t responding to the drugs they’re having. It’s called resistant or refractory leukaemia.  

Leukaemia that comes back after treatment is called relapsed leukaemia. 

Your child’s doctor may recommend they have one or more of the following:

• chemotherapy
• a stem cell transplant
• targeted cancer drug such as blinatumomab. Less commonly they might have inotuzumab  ozogamicin
• treatment as part of clinical trial
• CAR T-cell therapy
• radiotherapy to the testicles or surgery to remove them

Your child’s consultant will talk to you about the treatment available for your child.

Side effects

Immediate side effects happen while they are having treatment or very soon after it finishes. The side effects depend on the treatments your child has. Some side effects of acute lymphoblastic leukaemia treatment include:

• low resistance to infection due to low number of white blood cells

• breathless and looking pale due to a low number of red blood cell

• risk of bruising and bleeding due to a low number of platelets

• tiredness (fatigue)

• a sore mouth and tummy

• taste changes

• increased appetite while on steroids

• poor mobility and balance

• hair loss

• feeling or being sick

• mood problems

• constipation

• blood clots in the head usually causing headaches

• fits (seizures)

Your child might need to go into hospital to manage these side effects. This can happen when your child is mainly having outpatient treatment. The nurses will tell you what to look out for and when to call the hospital.

Their leukaemia treatment might be put on hold until they are well enough to start treatment again. This is common, but this change to family life and interruption to your child’s treatment can be difficult to cope with.