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. They need to swallow the tablet whole if possible with plenty of water.
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.
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 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:
- 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
- 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 food and nutrition. You might be surprised to see they are eating more, or less, than you thought at first. It might also give you an idea of what time of day they most feel like eating. You might be able to plan meals around this.
The Children’s Cancer and Leukaemia Group (CCLG) have a practical guide to helping your child eat, written for parents and carers of children with cancer. It has lots of helpful hints and tips.
The World Cancer Research Fund have a booklet aimed for adults, but it explains about how to eat well during cancer treatment and cope with common side effects.
During their maintenance treatment your child will have regular blood tests. Depending on the results, the doses of the maintenance chemotherapy might change. Your team will tell you how much to give and when to change.
Your child might still have their central line, so it’s easier to take blood. Older children might have cannulas for chemotherapy and have blood tests from a vein or a finger prick rather than keeping their line.
Every child is different. Many children are back to school before maintenance starts and are playing normally and taking part in the activities they enjoy. It takes some children slightly longer.
It can be difficult for children and parents to keep to the daily schedule of chemotherapy, while trying to live a more ‘normal’ family life. It can be hard for children to understand why they need to have more chemotherapy, if they feel well and their leukaemia is in remission. It’s also easy to forget.
Try anything that works for your family. You might want to try:
- giving the chemotherapy at the same time very evening
- putting an alarm on your phone to remind you
- rewarding your child using a sticker chart for every day they take their medicine, with something they enjoy to collect stickers for
Your treatment team will give you a plan and numbers to call if your child becomes unwell on maintenance treatment.
Support for you
This can be quite a challenging time. Perhaps you feel that everyone expects you to all be back to normal. And you are having to make time for work and school alongside the tests and treatment your child is having. It’s still okay and important to ask for help and support at this stage.
Your clinical nurse specialist would be a good person to talk to at first. They might suggest local support groups or other professionals that could help.
Your child will see their specialist team in clinic for at least 5 years after they have finished treatment for childhood leukaemia.