AML treatment and side effects

Updated 10 Aug 2017

The treatment you have for acute myeloid leukaemia (AML) will depend on your age, medical fitness and the type of AML you have.

Treatment is divided into intensive and non-intensive approaches. Intensive treatment is aimed at curing the disease and involves two phases of chemotherapy called remission induction therapy and consolidation therapy, which may or may not involve a stem cell transplant.

Non-intensive treatment is given to patients who might not be able to tolerate the stronger treatment in intensive therapy. Non-intensive treatment involves gentler chemotherapy, given either in hospital or at home. This option is not aimed at curing the disease – instead it aims to control the disease and give patients an excellent quality of life for as long as possible.

Throughout your treatment, your medical team will always discuss your treatment options with you. You’ll be able to give your opinions and preferences and ask questions at any point.

Planning your treatment

Treatment planning

Treatment planning looks at whether a certain treatment would cause you more harm than good. The most important factors in treatment planning are:

  • whether you’re fit and well enough to receive intensive chemotherapy and whether you’d benefit from this
  • whether doctors think there’s a high risk that the AML will return (a relapse) following standard treatment
  • your opinion on which treatments you want to receive.

Everyone is different, so your doctor will consider these factors – factors which determine your ‘fitness for treatment’ – on an individual basis.

Age and fitness

The biggest factor in determining your fitness for treatment is your age. If you’re over 60, some extra factors might affect how the AML is treated.

Doctors are more cautious about giving more intensive treatment to people over 60 because your age can affect how well your body responds to treatment or deals with toxic drugs. As each person is different, doctors can’t always say how age will affect your fitness for treatment. For example, a younger person with other medical problems might be less suitable for intensive treatment than a very fit but much older patient. Your healthcare team will bear all of this in mind when discussing your treatment options with you.

Risk of relapse

Your healthcare team will monitor your risk of relapse carefully throughout your treatment. The likelihood of you relapsing might change depending on which treatments you have.

A relapse is when the amount of leukaemia is reduced through treatment but not completely removed, and after a period of time the leukaemia comes back. Patients with a higher chance of relapse at diagnosis are more likely to have a stem cell transplant earlier in their treatment.

Many factors determine the risk of relapse. This will be assessed by your healthcare team initially when you’re diagnosed, and it’s often reassessed after each course of treatment.

Reviewing treatment planning

Throughout your treatment, decisions will be continuously reviewed with you. Your healthcare team will make sure they give you as much information as you want and need about the advantages and disadvantages of all available treatments and how long term side effects can be treated.

> Find out more information on clinical trials

Watch Professor Paresh Vyas, Consultant Haematologist at John Radcliffe Hospital, Oxford, talk about treatment planning for patients with AML.

Types and phases of treatment

The most important decision about your treatment is whether you have intensive treatment or non-intensive treatment.

Intensive treatment involves strong chemotherapy with the aim of cure, and this approach is split into two parts called remission induction therapy and consolidation therapy.

Non-intensive treatment usually involves gentler chemotherapy. The aim of non-intensive treatment is not to cure the patient but to give them the best quality of life for as long as possible.

Supportive care

As well as the active treatment you’ll receive to reduce the leukaemia, all patients receiving both intensive and non-intensive therapy will have a type of treatment called supportive care.

Supportive care is treatment to reduce infections, provide blood and platelet transfusions, and, in some cases, medicines to reduce bruising and bleeding.

Some people offered non-intensive treatment might decide not to go ahead with chemotherapy. This would mean you’d only receive supportive care, which will focus on helping your body to deal with the difficulties it’s having in making functioning blood cells.

Palliative care

Throughout your treatment, you might have contact with a palliative care team – they’re also known as a support care team.

They’re experts in managing your symptoms and improving your quality of life.

They’ll be able to support both you and family members. You’ll also need to take care of your general health – your palliative care team will be able to help here.

Outlook

Each patient with AML will have a different outlook (prognosis), which will depend on a range of factors. These include your age and medical fitness, whether your disease is low or high risk, and whether the cancer is primary or secondary.

Your prognosis

Patients in the low risk group who are treated with just chemotherapy, without a stem cell transplant, have about a 70–90% chance of long term survival (surviving to five years after remission). High risk patients tend to have a poorer prognosis, although some of these patients do particularly well with a stem cell transplant. For people who aren’t medically able to have intensive treatment, the goal is not to achieve a cure, but to improve the length and quality of life.

Both AML you’ve got because of previous treatment for another cancer and secondary AML are usually more difficult to treat with standard chemotherapy. This means that they have a poorer overall prognosis compared with patients with primary AML.

Talking about your prognosis

You may find it hard to ask or talk about your prognosis. Sometimes those close to you might want to know your prognosis even if you don’t. However, your healthcare team aren’t allowed to give this or any other information to anyone – not even family members – without your permission. Try to decide early on who you want to know about your condition, then tell your healthcare team – you can change your mind any time.

Remember that your outlook might change, for example, if you respond well to treatment. If there’s a change in your condition, or if you’ve finished all or part of your treatment, you might want to consider asking if your prognosis is still the same.

Intensive treatment

Although each patient is treated on an individual basis, intensive chemotherapy treatment is normally appropriate if you’re under 70–75 years of age and you have good medical fitness.

You’ll have intensive treatment in two phases called remission induction therapy and consolidation therapy. This treatment involves strong chemotherapy which often successfully kills the leukaemia cells, but it’s associated with more severe side effects. You’ll usually have three to four courses (sometimes called blocks or cycles) of chemotherapy over four to six months. Each course of chemotherapy lasts a few days, and you’ll normally recover from each course in about three to six weeks.

You’ll have most of your remission induction and consolidation treatment as an inpatient in hospital, but nearly all patients will get some time at home, even if it’s just for a few days.

Most patients get to go home for a week or so in between courses, usually just after chemotherapy has finished. During this time you’ll be monitored closely a couple of times a week. If you need them, you’ll be given blood and platelet transfusions, to support your body and reduce some of the symptoms you may be getting.

> For more information, download or order our booklet: Chemotherapy

Remission induction therapy

The remission induction phase aims to clear leukaemia cells from your blood and bone marrow and quickly get your bone marrow working normally again. This treatment involves a combination of chemotherapy and other drugs – you’ll usually have two courses of chemotherapy in this phase of your treatment. The chemotherapy will be given to you by intravenous (IV) infusion, into a large vein in your arm via a long, flexible tube. There are two types of lines that may be used:

  • a PICC line, which will go through a vein in your arm at the end of your elbow
  • a central line (also known as a Hickman line), which will go through a vein under your skin on the upper part of your chest.

Consolidation therapy

After you’ve finished remission induction therapy, you’ll start on consolidation therapy. The aim of this phase of treatment is to reduce your risk of relapse. Without consolidation therapy, there’s a higher risk of relapse in the year after your initial treatment.

During consolidation therapy, you’ll have more chemotherapy – usually one or two courses. You might also have a stem cell transplant. If you do have a transplant, you might not have any more chemotherapy after your remission induction treatment, or you just might just have one more course.

There are lots of different options for consolidation therapy, which are chosen on an individual basis. You’ll get to discuss this with your consultant.

Remission after intensive treatment

Your doctors will measure how well you’ve responded to treatment. During treatment you’ll have blood tests to see if your blood looks normal and if your blood cell count is normal. You’ll then have another bone marrow sample taken, to see if this looks normal too. You’ll have other genetic tests, similar to the ones you had when you were diagnosed, to look for any changes treatment has caused.

If your intensive treatment is a success, this is called remission. In remission, your bone marrow produces blood cells normally and you’ll have fewer than 5% of blast cells in your bone marrow. The DNA in your cells will also be back to normal.

Non-intensive treatment

Non-intensive treatment involves low doses of chemotherapy. Non-intensive treatment can be less effective in guaranteeing long term remission but it’s much less toxic. This may be a better option if you’re older or have other medical problems.

There are lots of different options for non-intensive treatment which vary from person to person, and no one treatment is better or worse than any other. A number of different drugs can be used and most people will be offered the chance to take part in a clinical trial.

Your treatment, and the way it’s given, will usually be tailored to your individual circumstances and aims for you to be able to spend as much quality time outside of the hospital as possible.

You’ll have most of your treatment as an outpatient, but you’ll have regular assessments with your hospital healthcare team.

Watch Professor Paresh Vyas, Consultant Haematologist at John Radcliffe Hospital, Oxford, talk about treatment for patients with AML.

Treatment to prevent central nervous system relapse

Very rarely, patients have problems with how their nervous system is working. This happens because the leukaemia cells pass into the fluid that surrounds the brain and spinal cord (cerebrospinal fluid, or CSF). If this is the case for you, some of the symptoms you may get include loss of strength and problems with your vision or senses.

On these rare occasions, your doctors will take a sample of fluid to be tested. This is done through a procedure called a lumbar puncture. During a lumbar puncture, the doctor will take a small sample of your CSF. A very fine needle is carefully inserted between the bones of the lower spine (backbone) under local anaesthetic.

If the tests show that you have leukaemia cells in your CSF, you’ll need a series of regular lumbar punctures. The process will be very similar to the procedure for getting a sample, but instead of fluid being taken from your CSF, a chemotherapy drug will be injected into your CSF to help treat and kill the leukaemia cells. Your doctor will talk to you about this type of treatment if you need it.

Stem cell transplants

In some people, leukaemia is 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).

Stem cell transplants in intensive treatment

You may be offered a stem cell transplant if you’re having intensive treatment, but only if the benefit of having a transplant outweighs the risk. This is usually based on your risk grouping.

  • In low risk patients, the benefit doesn’t normally outweigh the risk, so you won’t usually be offered a transplant. In the small number of low risk patients that do have one, or for those who relapse, the transplant will usually happen later on in your treatment schedule.
  • For intermediate risk patients the situation is more complex, and an individual decision will be made between you and your healthcare team.
  • In high risk patients, the benefit often outweighs the risk, and these patients are usually considered for a transplant early on, after consolidation chemotherapy.

Stem cell transplants as a relapse option

You may have the option of having a stem cell transplant as part of your relapse treatment. Patients who are under 70 in second remission (the leukaemia has gone for the second time) will be considered for a stem cell transplant, but this depends on your individual fitness and the consultant you’re seeing.

Patients over the age of around 70 may be able to have a reduced intensity transplant if they’re medically fit enough. These types of transplants have been developed to make the transplant more manageable with fewer long term side effects. If a transplant may be too risky for you, you’ll be able to discuss this with your healthcare team. It might be that you could take part in a clinical trial.

> For more information on stem cell transplants download or order our booklet The seven steps: blood stem cell and and bone marrow transplants

Side effects

There are many long term and short term side effects of treatment. Different people have different responses to their treatment. Even if two patients are receiving the same course of treatment, they might have a different experience. So you might not get all, or even any, of these side effects – try to bear this in mind when reading about them. If you have any questions, you might like to discuss it with your healthcare team.

Short term side effects of intensive treatment

Short term side effects can last for a few days or weeks – for some people they last for the length of their treatment. Sometimes you may get these side effects after your treatment.

Typical side effects include:

  • fatigue
  • nausea (feeling sick) and vomiting: these symptoms can be well-managed – you’ll receive anti-sickness drugs so this isn’t usually a problem for many patients
  • loss of taste – which can lower your appetite
  • hair loss – some patients consider wearing a wig during this time but ask your healthcare team about different options
  • diarrhoea – this symptom is common but can be well-managed with tablets
  • infections – all patients with AML will at some point get infections which will require time on antibiotics in hospital
  • rashes
  • damage to organs – such as the kidneys, liver or lungs
  • nerve damage, which may last for longer – this is a rare symptom.

Long term side effects of intensive treatment

Long term side effects can last for months or years. Some may not even occur until years after treatment has finished – these are known as late effects.

Infertility

You might be worried about the effect of your treatment on your fertility. It’s a common concern that many patients have, and one that also impacts on their partners and families too. If you’re having treatment for AML at an age when you’re thinking about having children or you think you might like to have children in the future, then it’s a good idea to discuss the options for protecting your fertility with your doctor.

Some chemotherapy drugs may have a temporary effect on fertility. Permanent infertility is most likely in patients who’ve had a stem cell transplant after high doses of chemotherapy or whole body irradiation.

It’s natural to worry about the effects of treatment on any children you might have after your treatment. Lots of evidence from clinical studies has shown that any cancer treatment a parent has doesn’t lead to an increased risk of cancer or other health problems in their children.

Developing other conditions

It’s possible for people to develop other cancers and blood disorders due to their treatment for AML. This can affect 2–5% of patients. This usually occurs five to eight years after treatment.

Modern treatment methods have been designed to reduce the use of drugs and radiotherapy which cause secondary conditions, meaning that the risks of developing these conditions are now much lower.

Heart damage

Anthracyclines are a group of chemotherapy drugs used to treat AML. These drugs join with the DNA in your cells and damage the DNA’s structure. They’re especially effective against cells which divide quickly, like cancer cells.

Anthracyclines can cause damage to your heart. However, this side effect is uncommon because healthcare teams are careful to limit the doses you have.

Side effects of non-intensive treatment

The main side effects of non-intensive treatment include:

  • being more vulnerable to infections
  • fatigue
  • being more prone to bleeding and bruising.

Some of the other side effects of non-intensive treatment are similar to those for intensive treatment, but they’ll be much milder or they may not happen at all. They include:

  • milder nausea
  • chance of hair loss
  • problems with your gut.

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

Follow-up

Your follow-up will mostly involve looking out for signs of relapse and treatment complications.

For the first year after your treatment, you’ll normally have a check-up every one to two months. After one year, your check-ups will get less and less frequent, until you have them every year at five years and onwards.

It’s also common for your follow-up to include tests of your bone marrow using a bone marrow aspirate test, like you had when you were diagnosed. These help doctors to monitor your levels of leukaemia cells.

Long term follow-up is really important if you’ve received treatments that may affect the function of your vital organs. Your doctor will discuss this with you, if this is the case for you.

Relapse

For some patients having intensive treatments, and for all having non-intensive treatment, there’s a risk of relapse.

Relapse means the cancer comes back. On average, this may affect around half of all patients who achieve a remission after their initial treatment, but every patient has different risk factors. The chance of relapse depends on the initial risk group you are in at diagnosis. Unfortunately not all patients who relapse will always respond well to more treatment.

Specialists can predict how successful more treatment will be by looking closely at the leukaemia cells. Using this information, you and your healthcare team can decide on the best way forward for your treatment.

Relapse treatment

The treatment for relapsed AML varies from patient to patient. Before you have any treatment, you’ll discuss your options with your healthcare team to find the best treatment for you. Lots of different factors can influence which treatment you have, including your age, your medical fitness, and how long you were in remission for. The main decision you and your healthcare team will have to make when you decide on your treatment is whether you’d like to use intensive treatment, which aims to cure the disease, or non-intensive treatment, which aims to give the best quality of life for as long as possible. Treatment might involve more chemotherapy or a stem cell transplant.

Achieving a cure is more common in patients whose first remission lasted a long time, who are medically fit, and who can have a stem cell transplant.

Palliative care in relapse

If the doctors feel that more treatment isn’t likely to succeed, you may be advised that palliative care is more appropriate than intensive treatment. Your doctor will discuss the options with you in detail before you decide on a treatment plan.

Palliative care will lessen your symptoms and control the disease rather than looking for a cure. It’s really important to note that palliative care is not the same as terminal care. Palliative care aims to extend survival as well as controlling your symptoms.

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