Childhood AML treatment and side effects

Updated 10 Aug 2017

The aim of treatment for AML is to get rid of the leukaemia cells and help your child’s bone marrow to work normally again.  Thanks to modern treatment, the majority of children with AML go into remission - meaning there’s no evidence of leukaemia in their body.

The main form of treatment for childhood AML is chemotherapy, which simply means drug therapy. 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

AML can develop rapidly, so it’s vital your child receives effective treatment soon after diagnosis. Before treatment begins, it’s very important that diagnosis is confirmed, as this allows doctors to choose the best treatment.

Risk groups

Your child will be classified into a risk group according to the results of the tests they had when they were diagnosed:

  • good/low risk (a greater chance of treatment being successful)
  • standard risk
  • high risk.

Risk grouping estimates how likely it is that conventional treatment will be successful. For children with a good or standard risk, conventional treatment is usually successful. Children at high risk may need another type of therapy if they’re to achieve remission. Remission means that there’s no evidence of leukaemia cells left in the body, or 5% or less of leukaemia cells are left.

Be aware that these are just generalisations: a child at high risk may respond well to treatment, while at times children with standard or good risk may not.

Your child’s risk group may change, depending on their response to initial treatment.

Pre-treatment

Some children can be quite ill when their condition is first diagnosed. Doctors may need to get them better before they can tolerate the drugs used to treat AML. They may have:

  • infections, due to low numbers of white blood cells
  • bleeding, because they don’t have enough platelets and substances in the blood needed for clotting
  • anaemia, due to low numbers of red blood cells.

Your child may be given antibiotics and blood or platelets to correct these problems.

Treatment types

AML will usually be treated with chemotherapy, or cancer-killing drugs. Most children respond very well to initial treatment. If leukaemia cells can no longer be seen in their blood or bone marrow under a microscope, their leukaemia is said to be ‘in remission’. Some children with higher risk cancers may need high-dose chemotherapy and a stem cell transplant. Radiotherapy (radiation therapy) is rarely used.

Over the course of your child’s treatment, conventional chemotherapy should take about five or six months and involves four courses of treatment, each lasting four to six weeks.

Your child will initially have two courses of treatment to try to bring about remission (you might hear this called the ‘induction phase’ or ‘remission induction phase)’. Then after remission has been achieved, your child will have two more courses of similar chemotherapy drugs (a consolidation phase) to try to kill remaining leukaemia cells and prevent relapse.

The first course uses intensive treatment to destroy as many leukaemia cells as possible.

Although children may be able to go home for a few days between courses, they might need to stay in hospital for supportive care. The intensity of the treatment and strength of the drugs means your child is likely to need blood transfusions or treatment for infections.

All children, regardless of whether the lumbar puncture tests show leukaemia cells in the cerebrospinal fluid (CSF), will have drugs injected into it. They usually receive two injections: one with their first course of chemotherapy and one with the second, to stop the cancer spreading to the CSF. Drugs given intrathecally (into the CSF) are more effective in doing this than drugs your child could take intravenously (into a vein).

Consolidation treatment

Most children will be in remission at the end of the induction phase but if they then stop treatment, there’s a high chance that the disease will return (relapse). So at the end of induction treatment they move onto what’s known as consolidation therapy.

The purpose of consolidation is to destroy any remaining leukaemia cells and to prevent relapse. Usually, children have two courses of chemotherapy which are very similar to the first two courses they had as part of their remission induction treatment. They then have a further two courses of different, usually higher dose, drugs. One called cytarabine is normally used.

Children may then have a stem cell transplant (rarely) or more typically have two further courses of treatment.

Chemotherapy

The main form of treatment for childhood AML is chemotherapy, which simply means drug therapy. The drugs used are cytotoxic, meaning they are toxic to cells. Unlike normal cells, cancer cells are out of control – they divide and reproduce rapidly.

Cytotoxic drugs interfere with cell division so a cell that’s dividing is killed. As cancer cells divide more often than normal cells, drugs that prevent cell division kill more cancer cells than normal cells.

Most children with AML respond very well to chemotherapy and don’t need a stem cell transplant as part of their initial treatment.

How drugs can be given

Chemotherapy drugs can be given in a number of ways:

  • by mouth (oral) as a tablet or capsule, although this is more rare
  • by injection into the spinal fluid (intrathecal)
  • by injection into the bloodstream through a vein (intravenous infusion, or drip).

For intravenous infusion, drugs will usually be given directly into a tube, known as a central line, inserted into a large blood vessel. This line is kept in over the whole period that your child is having treatment, so there’s no need for repeated needle-pricks and there’s less risk of infection. Your child shouldn’t feel any discomfort from the line, although some children find the idea of them difficult at first.

You might hear these words mentioned:

  • Hickman line – there are a few types of central line that can be put under the skin in your child’s chest; this is the name of one of the most common ones.
  • PICC line – a central line that’s put into your child’s arm.

Below are some drug names you may hear mentioned. These drugs are used in various combinations to treat childhood AML:

Drugs given by intravenous drip:

  • daunorubicin
  • etoposide
  • fludarabine
  • G-CSF (this drug is only used rarely)
  • idarubicin
  • mitoxantrone.

Drugs given by intravenous drip and intrathecal injection:

  • cytarabine.

Drugs given by intrathecal injection:

  • hydrocortisone
  • methotrexate.

Radiotherapy

It’s very unusual for cancer cells to remain in the CSF after chemotherapy drugs have been injected into the spinal fluid. But if this is the case, your child may be given radiotherapy to kill any remaining leukaemia cells. If your child is affected, you’ll have a chance to discuss this with their specialist.

Stem cell transplant

Stem cell transplants are rarely done in AML, unless

  • a child is considered high risk
  • their cytogenetic tests have pointed to a particular type of genetic fault
  • they haven’t responded to treatment as well as hoped, or
  • they’ve had a relapse.

Before a stem cell transplant sometimes large doses of chemotherapy and radiotherapy are given, with the aim of destroying existing stem cells and introducing new, healthy blood-producing stem cells to your child’s body – so curing the disease.

Stem cells are given to your child through a drip into a vein (intravenous transfusion); there’s no need for surgery.

Stem cells are collected from the bone marrow or blood of a matched donor – someone who has been tested to make sure their cells are compatible with your child’s. The donor may be a brother or sister but can be unrelated.

Stem cell transplants can only be done if there’s a well-matched donor available. Your child’s consultant will give you detailed advice on the risks and benefits of this type of treatment. It’s an intensive treatment aimed at cure but it can come with side effects, and it’s important that you understand what these are.

> To find out more about stem cell transplants, download or order our booklet The seven steps: blood stem cell and bone marrow transplants

Supportive care

Supportive care is an umbrella term 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 of treatment, or leukaemia symptoms.

Your child may need:

  • antibiotics to prevent and treat bacterial infections
  • an antibiotic twice a week to reduce the risk of a particular pneumonia
  • antifungals to prevent and treat fungal infections
  • prednisolone eye drops to prevent conjunctivitis, which may be caused by high doses of cytarabine
  • red blood cell and platelet transfusions, because the drugs used to treat AML damage the bone marrow’s ability to produce normal blood cells
  • a heart scan (echocardiogram ultrasound) before chemotherapy, because anthracycline drugs (such as daunorubicin and idarubicin) may affect the heart muscle if given in high doses, and your child’s doctor will want to monitor this.

> Find out more information about treatment decisions

You can find out more detailed information on how these drugs are given and their side effects on the  Cancer Research UK website​.

Side effects

Many cancer drugs cause unwanted effects (side effects) because they damage normal cells as well as killing the cancer cells. These side effects are mostly temporary and vary with each drug.

Your child may experience:

  • hair loss (this almost always happens)
  • nausea and vomiting (sickness)
  • low appetite and weight loss.

The low number of red blood cells and platelets being produced by the bone marrow may cause:

  • bruising
  • bleeding
  • breathlessness.

The low number of white blood cells being produced by the bone marrow may cause symptoms of an infection, such as:

  • a sore throat, mouth and stomach
  • a high temperature (a normal temperature is 37° centigrade or 98.4 fahrenheit)
  • redness around the site of their drip or central line.

You’ll see your healthcare team regularly, so if your child is having any side effects you should tell your team, as they might be able to help.

Long term effects of treatment

Unfortunately, chemotherapy can lead to long term problems. The effects depend on the type and amount of drugs used. Your child’s consultant or specialist nurse will advise you on possible unwanted effects before your child begins treatment. It can be hard to establish which drugs are responsible for which long term effects in childhood AML, as high doses of a number of drugs may be given over a short period of time.

Fertility

Of course, you’re likely to be concerned about the effect of the AML and the treatment on your child’s fertility. Chemotherapy for AML may affect your child’s ability to conceive in the future.

Your child will have a chance to discuss any concerns with their healthcare team, as they reach puberty. You should also take time to discuss this with your team, if you’d like to.

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

Most children respond very well to initial treatment. If leukaemia cells can no longer be seen in their blood or bone marrow under a microscope, their leukaemia is said to be ‘in remission’.

Once your child’s blood counts have recovered from their first course of chemotherapy, doctors will carry out a bone marrow test to assess their response and to see if your child is in remission.

If your child has had a good response to treatment they’ll proceed to consolidation therapy, which aims to achieve a lasting remission.

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

Follow-up

For the first year after your child’s chemotherapy, they’ll have a check-up every two to three months to monitor for signs of relapse (the AML coming back) or treatment complications. Checks will then gradually become less frequent, until they are just once a year after five years.

Although most children will achieve remission (display no evidence of disease), your child may relapse if their leukaemia cells have become resistant to drug treatment. This can happen with all anti-leukaemia drugs and is known as multidrug resistance (MDR). They’ll be considered for a stem cell transplant if they haven’t already had one.

In general, children who relapse a long time after their treatment has finished have a better chance of responding to further treatment.

Relapse

Sometimes the condition can return after remission has been achieved: this is called relapse.

Although most children will achieve remission (display no evidence of disease), your child may relapse if their leukaemia cells have become resistant to drug treatment. This can happen with all anti-leukaemia drugs and is known as multidrug resistance (MDR). They’ll be considered for a stem cell transplant if they haven’t already had one.

In general, children who relapse a long time after their treatment has finished have a better chance of responding to further treatment.

With the MRD test increasingly being used for children with AML, doctors hope to be able to identify children who may relapse much sooner, and intensify their treatment to reduce the risk of this happening.

Outlook

The chance of long term survival for children with AML has improved. Your child’s consultant will know their condition in depth and can talk to you about what their likely outlook will be, if this is something you want to discuss.

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.

We’ve included some general statistics here because some people say they find them useful. You don’t have to read any further if you’d prefer not to.

Statistics on remission and relapse

Around 90% of children will go into remission and if your child responds very well to their initial treatment, their outlook could improve.

Around 20–25% of children relapse. For these children the outlook may not be as good but generally speaking, the longer they’ve been in remission, the more positive the outlook. It’s important to remember that each child’s disease is individual and these statistics just provide general guidance.

With the MRD test increasingly being used for children with AML, doctors hope to be able to identify children who may relapse much sooner, and intensify their treatment to reduce the risk of this happening.

More than 60% of children live for at least five years after diagnosis. This doesn’t mean they only live for five years, this is just the measure that doctors commonly to use to look at how well people with a particular disease do in a broad sense.

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

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