Childhood ALL treatment and side effects

Updated 10 Aug 2017

Acute lymphoblastic leukaemia (ALL) is one of the most treatable cancers in children. The aim of treatment for ALL is to get rid of the leukaemia cells and help your child’s bone marrow to work normally again.

Your child will follow a treatment plan involving chemotherapy drugs, steroids and other medicines. The exact treatment your child has will depend on their individual condition, their health and your wishes.

Throughout your child’s treatment, your healthcare team will always discuss your child’s treatment options with you. You’ll be able to give your opinions and preferences and ask questions.

Treatment planning

It’s very important that your child starts treatment soon after being diagnosed, because ALL can be a fast-growing disease. Fortunately, most children respond very well to treatment and survival rates are high.

Most children in the UK who are diagnosed with any type of cancer enter what is known as a clinical trial. A clinical trial is where two or more treatment options are compared to see which brings the best results. They help researchers and doctors find new treatments and improve current ones.

The current trial for childhood ALL is called UKALL 2011. The treatment explained in this section is the same whether your child is taking part in the trial or not.
The standard treatment explained in this section isn’t used for children under one year old. If your child is under one year old, your consultant will discuss your child’s treatment options with you.

The aim of treatment for ALL is to get rid of the leukaemia cells and help your child’s bone marrow to work normally again. Chemotherapy is the main treatment for ALL. Your child will have a combination of chemotherapy drugs according to a treatment plan (your healthcare team may call this a ‘protocol’ or ‘regimen’).

The treatment is divided into five phases, or ‘blocks’. Some children will need more chemotherapy than others, and your healthcare team will adjust your child’s treatment based on test results. Any time there’s a change in your child’s treatment plan, your healthcare team will discuss this with you.

Treatment regimens

Based on the results of tests your child had when they were diagnosed, their age and their white cell count, your child will have one of three treatment plans, or regimens.

  • Regimen A uses the lowest intensity of treatment. This is the initial treatment plan offered to children under 10 years old and children with a low white cell count at diagnosis.
  • Regimen B is intermediate intensity. This is the initial treatment plan offered to children over 10 years old and children with a higher white cell count at diagnosis.
  • Regimen C uses the highest intensity of treatment. It isn’t used at the start of treatment, but children may be moved onto this regimen later if not enough leukaemia cells have been cleared following the first part of treatment on regimen A or B, or if the cytogenetic tests show that there are certain genetic abnormalities present in their cells. If a child needs to be moved onto regimen C, they won’t be moved back to a lower intensity regimen.

Treatment types and phases

In each phase of treatment your child will have a combination of several different drugs. The drugs may be given in different ways:

  • by mouth (oral) – as a tablet or solution
  • into a blood vessel (intravenous or IV) – this may be as a single injection or by a ‘drip’ (infusion)
  • into a muscle (intramuscular or IM) – as an injection
  • into the fluid around the spine and brain (intrathecal or IT) – as an injection; this type of treatment uses the same procedure as the lumbar puncture.

The following chemotherapy drugs are used in various combinations in treatment for childhood ALL:

  • cyclophosphamide – intravenous
  • cytarabine – intravenous
  • daunorubicin – intravenous
  • dexamethasone (a steroid) – tablets or liquid
  • vincristine – intravenous
  • intrathecal methotrexate – injected into the fluid around the spine and brain
  • mercaptopurine – tablets or liquid
  • oral methotrexate – tablets or liquid
  • pegaspargase/crisantaspase – intramuscular.

Phases of treatment

The total length of treatment is just over two years for girls and just over three years for boys. Treatment length is different for each because it’s been found that if boys stop treatment at two years, it’s more likely that their disease will return (this is known as a relapse).

This section gives an overview of the different phases of treatment. Your healthcare team will explain to you in detail which drugs your child will have and when, and can give you a chart to show this.

The treatment schedule is quite complicated and you’ll need to follow it carefully during the outpatient stages of treatment. If you’re having difficulty making sure your child receives all of the treatment at the right time, talk to your healthcare team – there are a number of different ways they can offer support.

Phase 1: induction

The first phase of treatment is called induction. For the first five weeks of treatment, your child will have intensive chemotherapy treatment to get rid of as many leukaemia cells as possible.

Your child will need to stay in hospital for at least the first week or two because the doctors will need to monitor them closely for any complications from treatment.

The doctors will do further bone marrow tests during and at the end of this first phase to see how your child is responding to the treatment. After two weeks, some children on regimen A will move onto regimen C. This will happen if the results of your child’s cytogenetic tests suggest that they need stronger treatment.

After four weeks, your child will have an MRD test to find out how many leukaemia cells are still in their bone marrow. If there are a low number of leukaemia cells present (this is called MRD low risk), your child will stay on the same treatment (regimen A or B). If there are a higher number of cells (this is called MRD risk), the treatment will move to the stronger regimen C.

Phase 2: consolidation

When the induction phase is complete, your child will have further chemotherapy to clear remaining leukaemia cells from the blood and bone marrow, and also to prevent leukaemia cells from spreading into the brain and spinal cord (the central nervous system or CNS).

For most of this time your child will be able to stay at home and only visit hospital for treatment or checkups (this is known as outpatient treatment). If your child has an infection or becomes ill at any stage during their treatment, they may need to return to hospital to stay in overnight or longer so doctors can monitor them closely.

The length of this phase and the type of chemotherapy your child will have is based on the results of the MRD test at the end of the induction phase.

  • If your child is MRD low risk, then consolidation will last for either three weeks (regimen A) or five weeks (regimen B).
  • If your child is MRD risk at the end of induction, then they’ll move onto regimen C and consolidation will last for 10 weeks.
  • If your child is on regimen B for induction, but the results of their cytogenetic tests during induction suggest that they need stronger treatment, then they’ll move onto regimen C at the start of consolidation.

If your child is MRD risk, your doctors will carry out extra MRD tests halfway through and at the end of consolidation. If these show that the disease isn’t responding to the treatment, then your consultant will talk to you about which alternative treatment options might be most effective.

Phase 3: interim maintenance

For children on regimen A and B, this third phase lasts for about two months and gives a break of less intensive treatment between consolidation and delayed intensification (phase 4). The main treatment during this period will be oral chemotherapy, and your child will be able to stay at home for most of the time.

Children on regimen C will have a more intensive course of chemotherapy involving methotrexate. Your child’s doctor will explain to you exactly how this treatment is given because this will depend on whether your child is taking part in the UKALL 2011 clinical trial or not.

Phase 4: delayed intensification

Delayed intensification will last for seven or eight weeks depending on whether your child is MRD low risk or MRD risk. The aim of this phase is to give intensive chemotherapy at a time when the number of leukaemia cells is very low, to clear as many of them as possible. Your child will mainly be an outpatient for this phase of treatment.

Phase 5: maintenance

This is the longest but gentlest phase of treatment. It lasts for just under two years for girls and just under three years for boys. It reduces the risk of the disease coming back. Your child will mainly be an outpatient for this phase of treatment.

By the time your child has moved onto maintenance therapy they may be well enough to resume their normal activities, including attending school regularly. However, recovery time varies a lot in children and some may take a little longer to get back to their normal activities, even if they’re feeling much better physically – this is normal too.

Supportive care

As well as the phases of treatment described, your child will need care to prevent and treat infections, and to deal with the side effects of treatment.

Preventing and treating infections

If your child gets an infection, they may need intensive treatment with intravenous antibiotics or antifungal drugs. They’ll also take an antibiotic for two days each week throughout their treatment, to reduce the risk of a particular type of pneumonia which can sometimes happen in patients with a weakened immune system.

Transfusions

The drugs used in your child’s treatment will reduce the number of normal blood cells made by their bone marrow. This means they’re likely to need red blood cell transfusions and platelet transfusions at times during their treatment.

Central line

Your child will usually have a tube, known as a central line, inserted into a large blood vessel. The central line can be used for taking blood as well as giving treatment and other medicines, and means the doctors won’t have to use a needle each time your child has their treatment.

There are various types of central lines used, and your healthcare team will show you how to care for the central line.

Feeding tube

Sometimes a child may find it difficult to eat or drink because of the side effects of chemotherapy. If this is particularly difficult, your child may need to be fed through a tube going directly into their stomach. In this case, your healthcare team will show you how to give feeds and how to care for the tube.

UKALL 2011 clinical trial

Today, around 90% of children with ALL can be cured. One of the most important reasons we’ve made this progress has been because of the information gathered from clinical trials. A clinical trial is when two or more treatment options are compared to see which brings the best results. They help researchers and doctors find new treatments and improve current ones.

Most children in the UK diagnosed with ALL are eligible to enter the UKALL 2011 trial. In most ways, the treatment children in the trial get isn’t very different from the standard treatment outlined in the treatment section of these pages. The same drugs are used to treat children whether or not they’re taking part in the trial; it’s important to understand that your child will be receiving effective treatment whether they’re taking part in the trial or not.

The study is comparing slightly different ways of using these drugs, to see whether the same results can be achieved with fewer side effects and also to prevent the disease from returning in children whose ALL responds slowly to treatment.

Your healthcare team can support you and answer any questions that may help you decide whether to enter your child into the trial. You can change your mind about your child being in the trial at any time, and your child’s safety and wellbeing is always the first priority.

Who is eligible for the UKALL 2011 trial?

Only a small number of children aren’t eligible for the trial.

These are:

  • children who are less than one year old at the time of their diagnosis
  • children who have a type of ALL called FAB L3 – these children will have a different course of treatment that’s more effective for this type
  • children who have a particular chromosome abnormality called Philadelphia positive ALL, which means they may be more likely to experience a relapse. If your child has started on the trial and their cytogenetic tests show that they have this abnormality, they’ll be withdrawn from the trial and your consultant will talk to you about which alternative treatment options might be most effective
  • children who have received previous treatment for leukaemia, because this trial is looking at how to treat newly diagnosed children.

How the trial works

The UKALL 2011 trial is what’s known as a randomised trial. This means that patients are randomly assigned to different treatments (known as treatment arms), usually by a computer.

This method means that neither the parents nor doctors influence which treatment any child gets. This helps make sure that the results aren’t biased in any way. Equal numbers of children are treated on each treatment arm, and at the end of the trial the results are compared.

The trial is investigating changes to the standard treatment used in phase 3 (interim maintenance) and phase 5 (maintenance) of your child's treatment.

In the interim maintenance phase, the trial is testing whether a higher dose of the chemotherapy drug methotrexate is better at preventing ALL from returning than the standard dose.

In the maintenance phase, the trial is studying whether part of the standard maintenance treatment (known as ‘pulses’) can be safely removed. These pulses involve doses of the chemotherapy drug vincristine and the steroid dexamethasone. They can cause some of the unpleasant side effects of standard maintenance.


 

 

 

 

 

 

 

 

> Find out more about clinical trials

For more information about the UKALL 2011 clinical trial, please see the trial parent information sheet, which your team will be able to provide.

At the end of your child’s induction treatment, your healthcare team will give you an information sheet which explains the treatment in more detail.

Side effects

There are some potential short term and long term side effects from treatment for childhood ALL.

Children have different responses to their treatment. Even if two children are having the same treatment, they may have a different experience. So your child might not get all of these side effects – try to bear this in mind when you read about them. You may also like to talk about potential side effects with your healthcare team.

Short term side effects from chemotherapy

Your child may experience some short term side effects from their chemotherapy treatment. They include:

  • an achy feeling
  • constipation
  • diarrhoea
  • extreme tiredness
  • hair loss
  • infections
  • rashes
  • sore mouth/mouth ulcers
  • nausea and vomiting
  • increased risk of bleeding/bruising.

Your child is unlikely to have all of these, and it’s important to remember that they are only temporary, but they can occur regularly. If your child does have side effects, tell your healthcare team as they may be able to help with them – there are medicines your child can take to help with nausea and vomiting, for instance.

Short term side effects from steroids

Steroid treatment can also cause side effects, such as:

  • increased appetite
  • mood changes and irritability
  • weight gain (especially around the face and stomach)
  • muscle weakness (especially in the legs)
  • high blood sugar levels, which may require medication.

Again, if your child has any of these side effects it’s worth discussing this with your healthcare team as they may be able to help with them.

Long term side effects from chemotherapy

A small number of children may develop health problems later in life as a result of treatment for ALL. The current clinical trial is looking for ways to reduce the long term side effects of treatment.

The long term effects of chemotherapy depend on the intensity of your child’s treatment and, in some cases, the total amount of drugs your child takes. It’s difficult to know exactly which drugs are responsible for which long term effects in situations like childhood ALL, where combinations of drugs are given over long periods of time. Your specialist will offer you detailed advice before your child begins their treatment.

Infertility

You may be worried about the effect of treatment on your child’s fertility. It’s a concern that many parents have, and your specialist will be able to discuss this with you before your child begins their treatment.

Lots of research has suggested that the overall risks to fertility are very low. The majority of children who are treated for ALL won’t go on to have any problems with their fertility.

It’s also natural to worry about the effects of treatment on any children your child may have later in life. A number of large studies in Britain and abroad have shown there’s no increased risk of cancer or other health problems in children whose parents received treatment for this type of cancer during childhood.

Relapse

Sometimes the condition can return after remission has been achieved: this is called relapse. This can happen either during treatment or after treatment has finished.

Although relapse is often harder to treat, especially if it happens early during treatment, there are still effective treatment options. Your child’s consultant will discuss these in detail with you in the event that your child experiences a relapse. When a relapse happens late in treatment, or after treatment is complete, there’s a good chance that your child can be treated successfully again.

Relapse sometimes happens in the fluid around the brain and spinal cord (this is called a CNS relapse) or in the testis in boys. This is called an extramedullary relapse.

In the near future, there’ll be a clinical trial to determine the best treatment for relapsed ALL.

Stem cell transplant

Most children with ALL will respond very well to chemotherapy and won’t need a stem cell transplant. However, a stem cell transplant is sometimes used to treat ALL which hasn’t responded well enough to initial chemotherapy, or in children who have relapsed. Stem cells can be taken from a brother or sister, or an unrelated donor.

In the unlikely event that your child needs a stem cell transplant, your consultant will give you detailed advice on what’s involved and the risks and benefits.

Remission

The aim of the first phase of treatment (the induction phase) is to achieve remission.

This means your child has had a good initial response to treatment, and no leukaemia cells can be seen in their blood or bone marrow when looked at under a microscope.

Children will still need further treatment after first going into remission. The amount and intensity of treatment depends on how well they’ve responded. This is based on the results of the MRD test, which shows how many leukaemia cells are still in their bone marrow.

If your child has been in remission for five years it’s likely that doctors will consider them cured.

Outlook

The outlook for most children with ALL is good, with a very high chance of long term survival, despite the small chance of the disease coming back.

In the most recent UK trial to be completed (UKALL 2003), around 90% of children aged under 16 who were treated for ALL were considered cured.

Some rare types of childhood ALL are more difficult to treat, so the outlook may vary. Your consultant will be able to tell you how these factors affect your child’s outlook.

Talking about your child’s prognosis

Even though the chance of survival is high, you may find it hard to ask or talk about your child’s prognosis. Sometimes those close to you may want to know your child’s prognosis, even if you prefer not to know. However, your healthcare team aren’t allowed to give this or any other information to anyone – not even family members – without you and/or your child’s permission. Try to decide early on who you and your child want to know about your child’s condition, then tell your healthcare team – you can change your mind any time.

Your child's healthcare team

If your child is diagnosed with ALL, your hospital should give you the names and contact details of their consultant, clinical nurse specialist and other members of their healthcare team – it's a good idea to write them down. You can then contact the team if you have any questions when you’re not at the hospital.

Your child’s consultant

Most children with leukaemia, or blood cancer, are treated by a paediatric haematologist (a doctor who specialises in treating children with blood disorders) or a paediatric oncologist (a doctor who specialises in treating children with cancer). Either way, your hospital consultant will be an expert in treating your child’s condition.

Your child’s clinical nurse specialist

All children with ALL will be given a key worker, usually a clinical nurse specialist (CNS). This nurse will be your point of contact with the rest of your child’s healthcare team. The CNS will care for your child as they go through their treatment; they’ll become important to you and your family and they’ll be a key link with the rest of your child’s healthcare team. You might like to arrange a meeting with your child’s CNS when your child is first diagnosed, to discuss their condition.

Your child’s multidisciplinary team

When your child is diagnosed with ALL, their condition is discussed at a multidisciplinary team (MDT) meeting. An MDT brings together doctors, nurses and any other specialist staff who’ll be looking after your child. A senior consultant usually leads these regular meetings. The team will discuss the best treatment for your child and every aspect of their care, including any changes in their condition.

Talking to other parents and patients

You might like to ask your child’s consultant or key worker if you can talk to other parents whose child has had the same diagnosis and treatment as yours. If you do, remember that someone else’s experience may differ from yours. For example, some children have side effects from a drug and others don’t.

You may also want to contact a support organisation – many provide meetings or further online support.

> A list of organisations who can offer support

Your child’s other healthcare professionals

You should tell other healthcare professionals your child sees – like their dentist or optician – about their diagnosis and any medication they’re taking.

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