Chemotherapy for children’s brain tumours

Chemotherapy uses anti cancer (cytotoxic) drugs to destroy cancer cells. The drugs circulate throughout the body in the bloodstream.

Chemotherapy can work well for some types of brain tumour. But it can be difficult to treat some brain tumours with chemotherapy drugs. This is because the blood brain barrier protects the brain. This is a natural filter and only lets certain substances pass through from the blood to the brain tissues.

Children with a brain tumour might have chemotherapy treatment for up to 18 months.

Will my child have chemotherapy?

Your child might have chemotherapy:

• after surgery for some types of brain tumour, to try and stop it coming back
• with radiotherapy and for some months afterwards
• if they have a brain tumour that has come back after treatment

Chemotherapy drugs

The type of chemotherapy your child has depends on several factors including:

• the type of brain tumour
• the age of your child
• if the tumour is low or high grade
• if they’re having an autologous transplant

Children less than 3 years old might have chemotherapy without radiotherapy. It depends on their type of brain tumour. This is to try and avoid radiotherapy to the whole brain and spine when they’re very young. This is to lower the risk of them developing long term side effects. Once they are over 3 years, radiotherapy is used in most children. 

Your child’s specialist will discuss the best treatment options for your child with you.

Your child usually has a combination of a few chemotherapy drugs. Here is a list of common chemotherapy drugs used to treat brain tumours:

• cyclophosphamide
• ifosfamide
• vincristine
• cisplatin
• etoposide
• carboplatin
• high dose methotrexate
• vinblastine
• procarbazine
• topotecan
• dactinomycin
• temozolomide
• lomustine
• thioguanine
• irinotecan
• methotrexate

We have information about each of these drugs on our cancer drugs A to Z list. The information is based on adults having these drugs. However it can give you a feel of what the side effects may be. If your child has more than one drug, the side effects may be different.

How often will my child have chemotherapy?

Your child usually has chemotherapy in cycles. This means they have the drugs for a few days every few weeks. There is a time with no treatment when they recover from the side effects.

How often they have treatment depends on the particular drug or drugs they’re having.

Having chemotherapy

Your child might have their chemotherapy as liquid or tablets (oral chemotherapy). Or they might have it through a vein into the bloodstream (intravenous chemotherapy).

Your child usually has treatment through a long flexible plastic tube. This is called a central line. There are different types, including a PICC line or port-a-cath . They’re called central lines because they end up in a central blood vessel close to the heart. They run up under the skin to a large vein by the collarbone.

These lines can stay in for much longer than cannulas . Sometimes for over 2 years. This means your child doesn’t have to have a cannula each time they have treatment. The nurses can also take blood from these more permanent lines.

We have more information about the different types of central lines. This information is written for adults with cancer, but some of the information and pictures might be helpful.

Some children might have their chemotherapy through a cannula, but this is rare. A cannula is a small tube that is put into your child’s hand or arm.

When they aren’t having treatment, your child’s nurse wraps it up with a soft bandage. This is to keep it covered, and prevent your child from taking it out.

Chemotherapy into the brain

During surgery, your treatment team might put a plastic dome under the skin of your child’s scalp. It's called a ventricular access device or an Ommaya reservoir.

Your child’s doctor or nurse gently puts a small needle through your child’s skin into the reservoir. And they give chemotherapy straight into the fluid filled spaces in the brain. So, it goes straight into their cerebrospinal fluid (CSF). This bypasses the blood brain barrier, which means doctors can give smaller doses of chemotherapy.

Chemotherapy into the spine (intrathecal chemotherapy)

Chemotherapy travels through the bloodstream to most parts of the body. But, most chemotherapy doesn’t reach the area around the brain and spinal cord well. So, it’s injected into the cerebrospinal fluid to destroy cancer cells in that area.

This is called intrathecal chemotherapy.

Your child’s doctor injects the drug into the fluid around the spinal cord during a lumbar puncture. This diagram shows a girl having a lumbar puncture.

Most children and young people have this test under general anaesthetic . Or they might have a medicine to make them feel sleepy and relaxed (sedative ). This helps them lie still on the couch for the test.

Side effects

Side effects vary from one child to another. It is difficult to predict how your child will be and what side effects they will have. Some children have only mild side effects, but for others the side effects are more severe.

Your child’s consultant goes through the benefits and potential side effects of treatment with you. And with your child if they are old enough.

The doctors and nurses looking after your child do everything possible to prevent and treat any side effects that come up. The side effects usually go away quite quickly after treatment stops. But some last longer or start after treatment has finished.

The side effects your child gets might be immediate or long term.

Immediate side effects

Immediate side effects happen whilst your child is having treatment or very soon after they finish. The side effects depend on which treatments they have. Some common side effects of chemotherapy treatment include:

An increased risk of getting an infection

Increased risk of getting an infection is due to a drop in white blood cells. Symptoms include a change in their temperature, aching muscles, headaches, feeling cold and shivery, and generally unwell. Your child might have other symptoms depending on where the infection is.

Infections can sometimes be life threatening. You should let your child’s doctor or nurse know urgently if you think they have an infection.

Low red blood cell counts (anaemia)

Your child might be tired, breathless and look pale due to a drop in red blood cells. This is called anaemia.

Bruising, bleeding gums or nose bleeds

This is due to a drop in the number of platelets in their blood. These blood cells help the blood to clot when we cut ourselves. Your child may have nosebleeds or bleeding gums after brushing their teeth. Or you may notice lots of tiny red spots or bruises on their arms or legs (known as petechiae).

Hair loss

Your child might lose all their hair. This includes their eyelashes, eyebrows, and if they have any, under their arms or on their legs. Their hair will usually grow back once treatment has finished, but it is likely to be softer. It may grow back a different colour or be curlier than before.

Constipation

Constipation is easier to sort out if it’s treated early. If you notice your child isn’t going to the toilet like they were before, let the nurse or doctor know. Try to encourage them to drink plenty and eat as much fresh fruit and vegetables as they can. The doctor may prescribe a laxative to help them.

Tiredness and weakness

Your child is likely to feel very tired and lack energy. Work at their pace. Try to get a structure to the day so they don’t nap too often, or they will get their days and nights mixed up. Encourage them to get dressed. Get the play specialist on the ward to help you with a gentle day plan that allows rest.

Feeling or being sick

Your child might feel or be sick. The doctors and nurses usually try to keep it well controlled with regular anti sickness medicines. Try avoiding giving your child fatty or fried foods. Get them to eat small meals and snacks. Encourage them to drink plenty of water and try relaxation techniques to help.

It is important to encourage your child to take anti sickness medicines as prescribed, even if they don’t feel sick. It is easier to prevent sickness rather than treating it once it has started. Some children might need a feeding tube, known as a nasogastric tube.

Your child’s healthcare team will talk you through the medicines they need to take, and if they need a feeding tube.

Sore mouth

Chemotherapy treatment can cause mouth sores and ulcers. This can be painful and you might find your child won’t drink or eat normally.

Try to keep  their mouth and teeth clean; get them to drink plenty; avoid giving them acidic foods such as oranges, lemons and grapefruits; keep their mouth moist and tell your child’s doctor or nurse if you notice any ulcers or they are struggling to eat and drink.

Allergic reactions

Some children might have an allergic reaction to some of the chemotherapy drugs. This reaction is likely to happen during treatment or when they first have the treatment. Symptoms of an allergic reaction include high temperature (fever), chills, feeling or being sick and difficulty breathing. 

Tell your child’s nurse straight away if you think they have any symptoms of an allergic reaction. They can give them medication to stop this happening.

Long term side effects

Some children with a brain tumour develop longer term effects of treatment. These might be from chemotherapy or from a combination of treatments. Long term side effects might develop weeks, months or years after treatment has ended.

These are different for every child. But some possible long term side effects of chemotherapy include:

• not being able to have children (fertility problems)
• thinning of the bones (osteoporosis )
• changes in how the kidneys and heart work
• growth problems
• a risk of developing a second cancer
• hearing problems

Your child’s doctor will talk to you about the possible risks depending on the treatment your child has had. They will continue to keep a close eye on your child, so that any problems can be treated early.