This section is about a type of cancer called acute myeloid leukaemia (AML). The other main type of leukaemia that can affect teenagers and young adults is acute lymphoblastic leukaemia (ALL).
Knowing a bit about how the body makes blood cells can help you understand leukaemia and its treatment.
Leukaemia is a cancer of the white blood cells. Normally, white blood cells divide and grow in a controlled way. In leukaemia, this process goes out of control. Most people with AML make too many immature white blood cells, called myeloblasts (sometimes called blasts). In some less common types of AML, too many immature platelets or red blood cells are also made. As the blasts do not mature, they cannot do the jobs that healthy blood cells do.
The immature blood cells (blasts) fill up the bone marrow. This means there isn’t enough space to make all the healthy white cells, red cells and platelets your body needs. The body needs these cells to:
We do not know what causes AML, but research is going on to try to find out. Like other cancers, AML is not infectious. You cannot catch it from someone and you cannot pass it on.
Some young people with genetic conditions have a higher risk of AML. A genetic condition is something you are born with, such as Down’s syndrome. Children of parents who smoke in the home also have a higher risk of AML. Having chemotherapy or radiotherapy as a child can also increase your risk of developing ALL when you are older.
Some conditions of the bone marrow that are not cancer can also increase your risk of AML. These include aplastic anaemia or myelodysplastic syndromes.
The cause of many AML symptoms is having fewer healthy blood cells than normal in the body.
Symptoms can include:
Some people find out they have leukaemia through a routine blood test, before they have any symptoms.
Symptoms may appear quickly over a few weeks. If you have any of these symptoms you should ask your doctor to check them. But remember that other illnesses could be causing them. The cause could be less serious than leukaemia.
If you think you have any of the symptoms of AML, you should go to your GP. They will talk to you about your symptoms, examine you and arrange tests or refer you to a specialist.
Remember that other things may be causing the symptoms. But it is important to get checked if you are worried.
It is important to remember that lots of different things can be causing symptoms of leukaemia. But you should visit your GP if you are worried. They can talk to you about your symptoms and arrange any tests you might need.
Your GP (family doctor) will examine you and arrange a blood test for you. The blood test might show that you could have leukaemia. If this happens, your GP will refer you to a specialist doctor at the hospital. The specialist doctor is called a haematologist. They treat people with blood problems.
The haematologist will examine you and ask you about your symptoms. They will also arrange for you to have some more tests. You may have:
If you have leukaemia, you might need more tests to check how your body is working generally. These could be:
This may seem like lots of tests. But the tests give doctors important information that helps you get the best treatment.
Waiting for test results can be scary. But understanding more about tests can help you cope. It can also help to get support from your family and friends or your specialist nurse and doctor.
We have more information about tests and scans.
The main treatment for acute myeloid leukaemia (AML) is chemotherapy (chemo). This means you have anti-cancer drugs to destroy the leukaemia cells.
The treatment can cause unpleasant side effects, so sometimes it may feel hard to deal with. But you will be in close contact with the hospital when you are most likely to feel unwell. The staff can help if things get tough. Don’t feel you have to be brave. Be honest about how you are feeling with your doctors and nurses and they can give you medicines to help.
AML is treated in two main phases:
You usually start chemotherapy quickly after finding out that you have AML.
Sometimes, you may have the option of treatment for AML as part of a cancer research trial. Cancer research trials try to find new and better treatments for cancer. The trials test new treatments, such as new chemotherapy drugs or targeted therapies. Or they may look at new ways of giving existing treatments.
Whether or not you take part in a cancer research trial is your decision. If you decide not to, you do not have to give a reason. But it can help to talk to the hospital staff about any questions or worries you have. This means they can give you the best advice. There will be no change in the way that the staff treat you. They will offer you the usual treatment for your situation.
If you are 18 or younger, you will have treatment in a specialist Principal Treatment Centre (PTC) for teenagers and young adults (TYA). If you are 19 or older, you can go to a PTC. Or you can choose to go to another hospital called a TYA designated hospital, if it is closer to home.
Chemotherapy drugs for AML are mainly given into a vein (intravenously). This might be by drip (intravenous infusion) or by injection. Chemotherapy given into a vein goes straight into the bloodstream. This means it can get to all areas of your body. Your treatment is usually given through a central line, PICC line or implantable port.
You might have a central line put into one of your main veins to make it easier for you to have treatment. A central line can stay in until the chemotherapy is over. This means you will not have a needle put into your arm every time you have chemotherapy. Your nurses and doctors can also use the central line to take blood samples for blood tests.
There are different kinds of central lines. The most common type is called a skin tunnelled central line. You may hear them called Hickman or Groshong lines.
Other types of central line include:
In some people, leukaemia cells may travel into the cerebrospinal fluid (CSF). This is the fluid that surrounds the spine and brain. It is harder for chemotherapy drugs in the bloodstream to reach the brain and spinal cord. To treat these areas, it is more helpful to inject the drugs directly into the CSF. This is done through a lumbar puncture. Having chemotherapy in this way is called intrathecal chemotherapy.
You will have a local anaesthetic in your lower back. This will numb the area so you will not feel any pain. The doctor gently puts a needle into the fluid in the spine. They take a sample of the fluid. This can be checked to see if there are any leukaemia cells in it. The doctor then injects the drugs into the space around the spine. The drugs help destroy any leukaemia cells in the fluid.
Some people get a headache after this treatment. Your doctor or nurse will give you painkillers for this. It can help if you lie flat for a short time afterwards.
In the first phase of treatment you will have chemotherapy to kill as many leukaemia cells as possible. The aim is to get you into remission. Remission means there is no sign of leukaemia cells in your blood or bone marrow.
This type of treatment involves:
You have chemotherapy over a few days. Then you have a few weeks off so that your body can recover from any side effects. The days you have the chemotherapy and the rest period together are called a cycle. You will usually have two cycles in the remission induction phase.
You will probably need to stay in hospital most of the time you are having this phase of treatment. This is so that the doctors can check how things are going and help with any side effects.
After remission induction treatment, doctors use blood and bone marrow tests to check for leukaemia cells. If the tests cannot find any leukaemia cells, the doctor will say you are in remission.
This phase of treatment is given to prevent the leukaemia from returning (relapsing).
Sometimes very small amounts of leukaemia cells may still be in your body. But they cannot be found by checking blood or bone marrow samples. So you need further treatment to make sure as many leukaemia cells as possible are destroyed.
You start this phase of treatment soon after you finish remission induction. You will usually have two courses of treatment. You might have the same chemotherapy drugs you have had before (at the same or higher doses). Or you might get different chemotherapy drugs.
When your doctors decide what chemotherapy treatment plan to give you they will think about:
You may have a few different chemotherapy drugs in each cycle. These may include:
As well as the chemotherapy drugs, you will have other drugs to:
Different chemotherapy drugs cause different side effects. Some people just have a few side effects. Others may have more. Everyone is different.
Most side effects are short-term (temporary) and gradually stop once treatment finishes.
The most common short-term side effects are:
Chemotherapy can also lower the number of red cells and platelets in your blood. Low numbers of red cells (called anaemia) can make you feel breathless and tired. Low numbers of platelets may cause bleeding and bruising. You will probably need blood and platelet transfusions to help stop this from happening.
There may be other late effects of treatment. You can ask your specialist doctor or nurse about your risk of any long-term effects.
Some people may have the option of having a stem cell transplant as part of their treatment. A stem cell transplant is when your bone marrow is replaced with bone marrow from a donor. This will give you a new, healthy bone marrow and your immune system can fight any remaining cancer cells.
You will usually only have this option if doctors think there is a high risk of the leukaemia coming back after chemotherapy.
Treatment for AML can affect your ability to get pregnant or make someone pregnant (fertility). This is more likely if you have a stem cell transplant.
Before your treatment starts, your doctor and nurses will talk to you about how your fertility may be affected. They will explain what may be done to help preserve your fertility.
Young men may be able to store sperm before starting treatment. This is so it can be used later if they want to have children. Rarely, young women can store eggs or fertilised eggs (embryos) before chemotherapy. This is so they may be able to have children after treatment.
But treatment for leukaemia needs to start as soon as possible. Sometimes, there is not enough time to store sperm. Storing eggs or embryos is more complicated, so usually there is not enough time to store either of these.
We have more information about fertility in young men and women.
Having chemotherapy can be hard. But the staff looking after you will give you medicines to help you cope with any side effects. Being able to cope with side effects will mean you can stay well enough to have treatment. You will have medicines to stop you feeling sick and antibiotics to help prevent infections.
Being in hospital for long periods of time is sometimes difficult. Even when you are home, there will probably be times when you feel rough and times when you feel better. If you are struggling to cope, try talking to friends, family, doctors and nurses. It is important not to hide your feelings.
Being in hospital or coming to hospital for treatment can be frustrating. It is especially frustrating when you miss out on school, college, university or work, or things your friends are doing. You could try talking to friends and family and see what they can do to help you. It can also help to talk to any new friends you’ve made, who are going through similar experiences to you.
There are a number of useful organisations that can help you with advice and support about leukaemia
An organisation dedicated to beating blood cancer by funding research and supporting those affected. Provides free information and a free telephone support line.
A charity dedicated to ensuring that anyone affected by blood cancer receives the right information, advice and support
Find out about how cancer affects different parts of your life and what help and support is available to you.
Based on content originally produced by Macmillan Cancer Support.