Childhood leukaemia treatment and side effects

Updated 10 Aug 2017

The 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.

To find out more about treatments for different types of childhood leukaemia, see our information on childhood acute lymphoblastic leukaemia (ALL) and childhood acute myeloid leukaemia (AML)

Treatment planning

Your doctor will recommend a treatment plan for your child and talk to you about what it will involve. The treatment your child has will depend on the exact type of leukaemia they have, as well as on the results of tests they have after their diagnosis and during treatment.

It’s very important that your child starts treatment soon after being diagnosed, because childhood leukaemia can be a fast-growing disease.

Your child’s treatment plan may need to change along the way. If this happens, your healthcare team will explain why, and talk to you about the different options available to you.

Types of treatment for childhood leukaemia

Your child will have the treatment that’s right for them – the treatment will be different depending on which type of leukaemia they have and their individual needs. Even children who have the same type of leukaemia won’t always have the same treatment.

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 types

Below are some of the types of treatment your child might have if they have leukaemia.

Chemotherapy

Chemotherapy is the main form of treatment for childhood leukaemia.

Chemotherapy is used to kill cells and stop them dividing. Although this type of treatment is aimed at the cancer cells, the treatment also affects normal cells which divide quickly, like the hair and gut.

Your child will have a combination of different drugs. Sometimes these will be given in your child’s vein (intravenously) or sometimes they might need to take tablets. Your child will usually have several courses (sometimes called blocks or cycles) of chemotherapy during their treatment.

Stem cell transplants

Most children with leukaemia will respond well to chemotherapy and won’t need a stem cell transplant. In rare cases, childhood leukaemia may be best cured by having a stem cell transplant. This is where a patient receives chemotherapy to reduce the leukaemia in their bone marrow, then receives blood stem cells from another healthy individual (a donor).

Supportive care

Supportive care is a term used to describe the many ways in which your child’s healthcare team will protect them from infection and minimise discomfort from either the side effects from treatment, or leukaemia symptoms.

> Find out more about different types of treatment for blood cancer

Side effects of childhood leukaemia treatments

Many cancer drugs cause unwanted effects (side effects) because they damage normal cells as well as killing the cancer cells.

These might be short term side effects, which just last for the duration of your child’s treatment, or long term side effects, which might have an impact for weeks, months or years after your child’s treatment.

Different children have different responses to their treatment. Even if two children are having the same treatment, they may have a different experience. Your child might not get all, or even any, 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.

Potential side effects from chemotherapy

Specific types of chemotherapy drugs might have different side effects. It’s best to talk to your healthcare team about any potential side effects of any chemotherapy drugs your child might be having.

Short term side effects from chemotherapy

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

  • an achy flu-like feeling
  • constipation
  • diarrhoea
  • bruising and bleeding
  • extreme tiredness (fatigue)
  • hair loss
  • infections
  • rashes
  • a sore mouth or 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

Your child’s treatment may also include steroids, which 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

With any type of chemotherapy, there’s always, at least, a small risk of long term side effects. These could include problems with the thyroid, heart or lung. 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 leukaemia, where combinations of drugs are given over long periods of time. Your specialist will offer you detailed advice before your child begins their treatment.

Potential impact on your child’s fertility

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.

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.

Remission

If your child has a good initial response to treatment, meaning no leukaemia cells can be seen in their blood or bone marrow when looked at under a microscope, this is called remission.

Children will still need further treatment after first going into remission. The amount and intensity of treatment depends on how well they’ve responded, and the type of leukaemia they have.

Follow-up after treatment

Your child’s follow-up will mostly look out for signs of relapse and treatment complications.

At the end of treatment, your child will have a bone marrow test to check that the bone marrow has been cleared of leukaemia cells. During the first year after your child finishes their treatment, they’ll normally have a check-up every two to three months.

Your child will have blood tests at these check-ups, but no further bone marrow tests will be done during follow-up if your child’s blood test results are normal. After one year, your child’s check-ups will get less and less frequent, until they’re given every year at five years and onwards.

Telling your GP and other healthcare professionals

It’s very important to make sure that your child’s GP is aware of the treatment they’ve had for leukaemia. If your child becomes ill later in life, it’s important to make sure that the doctors looking after them are aware of their medical history. Even for unrelated conditions, the diagnosis and choice of treatment may be more difficult if your child’s medical history isn’t available.

If you wish, you can complete a treatment diary with a full record of your child’s diagnosis, the types of treatment and the total amount of treatment they’ve had. Your healthcare team should also give you an ‘end of treatment summary’ containing all of this information when your child finishes their treatment.

Relapse

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

Treatment in relapse

Although relapse is often harder to treat, there are still effective treatment options. Your child will likely have further courses of chemotherapy. This will sometimes be followed by a stem cell transplant, although this is only done rarely. Your child’s consultant will discuss the treatment options in detail with you in the event that your child experiences a relapse.

Outlook

Every child is different, so your consultant and healthcare team are the best people to ask about your child’s likely outlook (prognosis).

The prognosis for children with leukaemia is improving all the time. Your child’s outlook depends on lots of factors, including the specific type of leukaemia they are being treated for. Your consultant is the best person to talk to about your child’s prognosis.

Some people might not want to find out more about their child’s prognosis. Whatever works for you is fine, and you can tell your child’s healthcare team if this is something you’d rather not talk about. You can change your mind at any time. It might be the case that other people want to know your child’s prognosis, but your healthcare team aren’t allowed to tell them this information without your permission.

Your child's healthcare team

If your child is diagnosed with leukaemia, 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 leukaemia 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 leukaemia, 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.

> Find 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.

Questions to ask

When you’re with your child’s healthcare team, trying to take in lots of new information, it’s easy to forget what you wanted to ask. Some people find it useful to write down the questions beforehand.

Here are some questions you might like to ask at different times.

Tests

  • What tests will my child have?
  • What will these tests show?
  • Where will the tests be done?
  • Are there any risks associated with the tests?
  • Will any of the tests be painful?
  • Do I need to know anything about preparing my child for the tests, for example not giving them anything to eat beforehand?
  • How long will it take to get the results?

Treatment – general

  • Will my child need to have treatment?
  • What does the treatment do?
  • Is there a choice of treatments?
  • Is there a clinical trial that my child could join?
  • What’s likely to happen if I decide I don’t want my child to have the treatment my healthcare team recommend?
  • Who do I contact if my child takes a turn for the worse?

Type of treatment

Chemotherapy, biological therapies and steroids

  • What type of drug combinations will my child have?
  • Will my child have to stay in hospital?
  • If my child doesn’t stay in hospital, how often will he or she need to go to hospital as an outpatient?
  • What chemotherapy will they be given?
  • Will they be given it by mouth, injection or drip (into a vein)?
  • Will their treatment be continuous or in blocks of treatment (with a break in between)?
  • How long will their treatment last?
  • What side effects could they get from treatment?
  • Can side effects be treated or prevented?
  • Will side effects affect them all the time or only while they’re being given certain drugs?
  • What effect is the treatment likely to have on their daily life?
  • Will they be able to carry on at school?
  • Will we need to take special precautions, for example against infection?

Stem cell transplant

  • Is a transplant an option for my child?
  • How long will he or she be in hospital for?
  • Does he or she have to be in isolation?
  • How long will it be before they get back to normal?

Radiotherapy

  • Will my child need radiotherapy?
  • How often will they need radiotherapy and over what time period?
  • How long will each session take?
  • What are the side effects?
  • Can side effects be treated or prevented?
  • Do we need to take any special precautions?

Choosing the right treatment for you

If you’re asked to choose between treatments, you might like to ask your consultant these questions about each one:

  • What’s the best outcome I can hope for?
  • How might the treatment affect my child’s quality of life?
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