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Maintenance treatment for childhood acute lymphoblastic leukaemia (ALL)

The maintenance treatment phase for childhood acute lymphoblastic leukaemia (ALL) usually takes 2 years from the start of consolidation 1 treatment.

Maintenance means your child has a more gentle chemotherapy compared with the other treatment phases. They spend most of their time at home and have treatment as an outpatient.

Why does my child need maintenance if their leukaemia is in remission?

The aim of maintenance treatment is to get rid of the few remaining leukaemia cells. As well as keep the leukaemia away and prevent it from coming back (relapse).

What does maintenance treatment involve?

Chemotherapy is the main treatment. Some children also have blocks, called pulses, of steroids together with intravenous chemotherapy. The exact treatment they have depends on their risk group.

Remember this is just a guide, your child’s consultant and clinical nurse specialist will give you a copy of the specific treatment plan for your child.

Chemotherapy by mouth

Your child takes chemotherapy as tablets or a liquid every day during maintenance. This chemotherapy drug is called mercaptopurine, also known as 6 - MP. They take it once a day, at the same time each day. Your child should not take the mercaptopurine at the same time as milk or dairy products. They can take them 1 hour before or 2 hours after milk or dairy products.

Once a week they have the chemotherapy drug methotrexate. It comes as a tablet or liquid. Many children take this on the same day each week to make it easy to remember.

Other drugs

Your child also might have:

  • vincristine chemotherapy as an injection into a vein

  • steroid tablets or liquid for 5 days when they are having the vincristine injection

  • methotrexate chemotherapy as an injection into the spinal fluid (intrathecal injection)

  • a targeted cancer drug such as imatinib. Your child takes this every day if they have specific changes in their cancer cells.

Side effects of maintenance treatment

Not everyone gets side effects from chemotherapy. But all children having chemotherapy are at risk of getting an infection. This is because chemotherapy can lower the number of white blood cells in the blood. 

Other side effects of chemotherapy treatment might include:

  • constipation
  • jaw pain
  • numbness and tingling in the fingers or toes
  • aches and pains in the limbs
  • a red rash to the face – moisturiser or gentle steroid cream can help with this
  • feeling or being sick
  • tiredness or weakness
  • hair loss
  • mouth sores and ulcers
  • headaches
  • dizziness
  • diarrhoea
  • yellowing of the skin and whites of the eyes
  • loss of appetite
  • anaemia due to low levels of red blood cells in the blood
  • increased risk of bleeding due to a low number of platelets in the blood

Your child’s doctors and nurses monitor them closely for any side effects of treatment. They can adjust treatment doses or give other medications and supportive care to help.

Steroids also have their own side effects. Your child might have one or more of the following when they have steroid blocks (pulses)::

  • changes in their blood sugar levels
  • your child might be more restless, emotional or irritable
  • some children might get very low in mood
  • increased in their appetite

Eating and drinking

Ask your child’s specialist team if you and your child can see a dietician if you are worried they aren’t eating enough or are putting on weight because of steroids. They can give you and your child information and support including tips about eating during treatment.

You might start by making a food diary of what your child eats for a few days. This can give you a starting point when talking to a health professional about