Chemotherapy for acute lymphoblastic leukaemia
Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy the leukaemia cells. The drugs travel round the body in the bloodstream.
For people who have just been diagnosed with ALL, it’s important to start treatment as soon as possible.
Overview of chemotherapy for ALL
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Treatment is given in three main phases and can take up to 2–3 years to complete.
Induction – the aim is to get you into remission (where no leukaemia cells can be found). You have this phase of treatment as an inpatient. You will usually spend a few weeks in hospital.
Intensification/consolidation – the aim is to get rid of any leukaemia cells that may remain but can’t be seen. You’ll have some treatment as an inpatient but most as an outpatient.
Maintenance – the aim is to reduce the risk of leukaemia coming back. You have treatment as an outpatient as it’s mostly given as tablets. You will also have chemotherapy injections or lumbar punctures every few weeks.
Throughout these phases of your treatment you’ll have regular tests, including blood tests, lumbar punctures, bone marrow biopsies and PCR tests for minimal residual disease. Your doctor will use the results of these tests to plan the next phase or make changes to your treatment if needed.
You’ll have several different chemotherapy drugs in various combinations in each phase of treatment. Some drugs are given into a vein (intravenously) and others are given as a tablet. Some chemotherapy drugs are given into the fluid around the spine. This is called intrathecal chemotherapy.
Steroids are nearly always given as part of treatment for ALL. They kill leukaemia cells, help make chemotherapy more effective and reduce some of its side effects. You will usually start steroid treatment a few days before chemotherapy.
Chemotherapy drugs are able to get rid of large numbers of leukaemia cells quite quickly. As this happens, your body makes large amounts of a waste chemical called uric acid. This is called tumour lysis . Uric acid can damage the kidneys. To help protect the kidneys you will be given a tablet called allopurinol or a drip (infusion) called rasburicase.
A chemotherapy specialist nurse talks about having intravenous chemotherapy (chemotherapy into a vein), what to expect and possible side effects. You can also hear other people's experiences of having treatment.
Clinical trials for ALL
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In the UK, most treatment for ALL is given as part of large national and international clinical trials. The trials use drugs and treatments for ALL that are already known to work well, but give them in different combinations. They may also test newer types of drugs alongside current treatments. This helps doctors to improve treatments further and find out more about the best way to give them.
Each trial uses a combination of different chemotherapy drugs.
Depending on your age and general fitness you will usually be invited to enter a clinical trial. Many of the trial names begin with the name ‘UKALL’ which stands for United Kingdom Acute Lymphoblastic Leukaemia. Your doctor will tell you about the UKALL trial which you can enter. The following are some of the current trials available in the UK. There may be other trials available which your doctor will discuss with you.
This trial is for children and young people aged 1–24. We have written this information for those aged 16–24. We have separate information on children under the age of 16 as well as more information on ALL in children.
Treatment takes place in five phases. In each phase you will be given a combination of chemotherapy drugs. For some phases you will mainly be treated as an inpatient and for others you will have most treatments as an outpatient.
UKALL 2011 phases
Planned time in hospital
To get you into remission
between 1-4 weeks
To get rid of any remaining leukaemia cells
To give you a break from intensive treatment
To get rid of any leukaemia cells remaining
To keep leukaemia away long-term
This trial is for people aged 25–65. You may also be invited to enter this trial if you are aged 19–25 and have the Philadelphia chromosome. Your doctors and nurses will give you full and detailed information about the trial if you agree to enter, but we have outlined it in simple terms here.
The first phase of treatment is called induction. Its aim is to get you into remission. This phase lasts about eight weeks. You will be in hospital for most of this time.
During induction you will be given a combination of several chemotherapy drugs. After the induction phase of treatment you will have tests to check that you are in remission and to find out what your risk of the leukaemia coming back is.
Following induction, if you are over 40, you will have intensification treatment made up of high dose chemotherapy. This takes about 4 weeks with some of the time spent in hospital.
The next phase of this trial depends on your risk of leukaemia coming back. It also depends on whether you have a brother or sister who can be a stem cell donor (sibling donor) or not.
If you have a sibling donor
If you have a brother or sister (sibling) who is a suitable donor you may have a stem cell transplant.
If you don’t have a sibling donor
If you don’t have a sibling donor your treatment plan will depend on the risk of the leukaemia coming back.
If your doctors think there is a high risk the leukaemia could come back, you may be given a stem cell transplant from an unrelated donor.
Whether you are high risk depends on a number of factors. Some of these include:
the number of white cells in your blood (white cell count) when you were diagnosed
whether the leukaemia cells have chromosome changes such as the Philadelphia chromosome
the level of minimal residual disease.
If there is a moderate risk (called standard risk) the leukaemia could come back, you will be offered intensification chemotherapy. This is to try to prevent or treat any leukaemia in the brain or spinal cord. This will be followed by further chemotherapy (consolidation) which you can often have as an outpatient. Then finally you will have maintenance treatment as an outpatient with lower doses of chemotherapy.
This trial is for people aged 60 and over. You may also be invited to enter this trial if you are 55 and over but are not fit enough to have intensive treatment. Intensive treatment means having lots of treatment, sometimes at high doses.
People in this trial will have many of the same drugs as those in younger age groups. But they may be given them in a standard or low dose depending on how well they are. Most people will have their treatment in the three phases previously mentioned: induction, intensification and maintenance.
UKALL 60 is a type of trial called an observational study. This means that the trial is not looking at a specific treatment plan or particular drug. Instead doctors use existing and current treatments and the researchers make a record of what happens. Once this information is gathered it can help guide researchers to which treatments they need to focus on in future trials for this age group.
The following chemotherapy drugs are used to treat ALL. They are used in the three UKALL trials in different combinations. You will also be treated with a combination of them if you have standard treatment outside of a trial. Your doctors and nurses can give you more information.
Another chemotherapy drug, nelarabine (Atriance ®), is sometimes used to treat T-cell ALL. It can be given as part of a clinical trial or if leukaemia has come back after treatment.
Nelarabine is given as a drip (infusion). Your doctor or specialist nurse can give you more information on it.
How chemotherapy is given
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Chemotherapy for ALL can be given by:
injection or a drip directly into a vein (intravenous chemotherapy)
mouth as tablets or capsules (oral chemotherapy)
injection into the spinal fluid (intrathecal chemotherapy)
injection into muscle (intramuscular) or under the skin (subcutaneous)
Intravenous chemotherapy is usually given through a central line. Some people may have chemotherapy given through a PICC line or implantable port.
Most people having treatment for ALL will have a central line. A central line is a long, thin hollow tube that is inserted into a vein in your chest. The type most commonly used in leukaemia is called a skin-tunnelled central venous catheter. Hickman ® and Groshong ® lines are commonly used brands.
A central line can be used to give chemotherapy intravenously and to take blood samples, so you won’t need repeated injections or needles put into your vein while you have one. It is designed to stay in place for many months, throughout all your chemotherapy treatment sessions.
You’ll be given a local anaesthetic before the central line is put in. The doctor or chemotherapy nurse will explain the procedure to you. After the line has been put in place, you may have some mild pain or stiffness for a few days. Your doctor can give you painkillers for this.
Before you go home, make sure you’re aware of who will be looking after your line. The nurses can show you or your family how to care for it to prevent blockages or infection. If you have any problems, contact the staff in the chemotherapy clinic or on the ward for advice.
If you’re not comfortable looking after the line yourself, then you can be referred to a district nurse who can help look after the line while you’re at home.
PICC lines and implantable ports
Instead of a central line, an implantable port or occasionally a PICC line (peripherally inserted central venous catheter) may be used.
An implantable port is a thin, soft plastic tube that’s put into a vein in the chest and has an opening (port) just under the skin of the chest or arm. A PICC line is a long, thin tube put into a vein near the crook of your arm.
Your doctor or chemotherapy nurse will explain the procedure to you. You'll be given a local anaesthetic before the line is put in.
Leukaemia cells may travel into the cerebrospinal fluid (CSF), which surrounds the spine and brain. Chemotherapy drugs in the bloodstream can’t reach the brain and spinal cord. To treat these parts of the body the drugs need to be injected directly into the cerebrospinal fluid. This is done through a lumbar puncture. Giving chemotherapy in this way is called intrathecal chemotherapy.
You’ll be given intrathecal chemotherapy even if leukaemia cells can’t be detected in the CSF, as research has shown that there will almost always be some leukaemia cells in the CSF and it’s important these are destroyed.
After giving you a local anaesthetic in your lower back, the doctor gently puts a needle into the fluid in the spine. A small amount of fluid is drawn off and the drugs are injected into the space around the spine. The drugs will help to destroy any leukaemia cells in the fluid. The fluid removed can be checked to see if there are any leukaemia cells.
Animations and information you might find helpful
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This animation is about central lines, how they are fitted and what they are for.
This animation is about PICC lines, how they are fitted and what they are for.
Possible side effects of chemotherapy
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Risk of infection
Chemotherapy can reduce the number of white blood cells, which help fight infection. If the number of your white blood cells is low you’ll be more prone to infections. A low white blood cell count is called neutropenia. Your doctor may prescribe you antibiotics and other drugs to help prevent an infection. Your nurse may give you injections of a drug called G-CSF (granulocyte-colony stimulating factor) under the skin. It encourages the bone marrow to make more white blood cells.
While you are an inpatient your nurse will check your temperature regularly and monitor you for any other signs of infection. Always let them know if you feel unwell or cold and shivery.
If you are at home contact the hospital immediately on the 24-hour contact number you’ve been given and speak to a nurse or doctor if:
you develop a high temperature – this may be over 37.5°C (99.5°F) or over 38°C (100.4°F) depending on the hospital’s policy. Follow the advice that you have been given by your chemotherapy team
you suddenly feel unwell, even with a normal temperature
you feel shivery and shaky
you have any symptoms of an infection such as a cold, sore throat, cough, passing urine frequently (urine infection), or diarrhoea.
You’ll be given antibiotics to treat any infection. You’ll have regular blood tests to check the levels of all your blood cells. Your treatment may need to be delayed if the number of your white blood cells is low.
We have more information on how to avoid infection when you have low immunity, which you may find helpful.
Increased bleeding and bruising
If the number of platelets in your blood is reduced you may bruise very easily, or bleed more than usual from minor cuts or grazes.
Tell your hospital doctor or nurse about this and contact them straight away if you notice or have:
tiny red or purple spots on the skin (petechiae) that sometimes cluster to make a rash.
If your platelets are low, particularly during a period at home, you’ll need to be careful to avoid injuries. Wear protective gloves when doing anything around the house or gardening. Be careful to avoid bumping into things or tripping. Use a soft toothbrush to protect your gums from bleeding and don’t floss.
You will probably need platelet transfusions at times during your treatment. These are given by a drip (infusion). The platelets start working immediately to prevent bruising and bleeding.
Chemotherapy reduces the number of red blood cells in your blood. This can make you feel very tired and lacking in energy. You may also become breathless, very tired and lacking in energy. You may also become breathless and feel dizzy. These symptoms happen because the red blood cells contain haemoglobin, which carries oxygen around the body. You’re likely to need blood transfusions to help with this. Some people find they feel better almost as soon as they have had the transfusion.
Some chemotherapy drugs can make you feel sick (nauseated) or possibly be sick (vomit). Your haematologist will prescribe anti-sickness (anti-emetic) drugs to prevent this. Let your doctor or nurse know if your anti-sickness drugs are not helping, as there are several different types you can take.
Your mouth may become sore (or dry), or you may notice ulcers during treatment. Mouth ulcers can become infected. Drinking plenty of fluids and cleaning your teeth regularly and gently with a soft toothbrush can help to reduce the risk of this happening. Some people find sucking on ice may be soothing.
Always let your doctor or chemotherapy nurse know if you have mouth ulcers, or any problems with your mouth. They can give you mouthwashes, medicines and gels to help with the pain and clear or prevent any infection.
Your doctor can prescribe drugs to control diarrhoea. Let them know if it is severe or if it doesn’t get better. Make sure you drink at least two litres (three and a half pints) of fluids every day if you have diarrhoea.
You will probably feel very tired and need a lot of rest. Try to balance this with some gentle exercise, such as short walks, which will help. You’ll probably tire easily for some months after your treatment, but this will gradually get better.
You usually lose all the hair on your head during intensive chemotherapy treatment for ALL. Your eyelashes, eyebrows and other body hair may also thin or fall out. This usually starts after your first or second cycle of chemotherapy. It is almost always temporary and your hair will grow back over a few months once your treatment is over or during maintenance treatment (if you have this).
It is important to cover your head to protect your scalp when you are out in the sun until your hair grows back. Your nurse can give you advice about coping with hair loss.
Hair loss – helpful hints
Cutting hair short before chemotherapy can stop the weight of long hair pulling on the scalp, which can make hair fall out earlier.
Wearing a hairnet, soft cap or turban at night stops your hair becoming tangled and helps to collect loose hair.
You can ask your own hairdresser to cut and style your wig for you.
There are lots of ways you can cover up if you choose to, using hats, caps, wigs turbans, scarves, bandanas etc.
If your skin feels dry, try using an unperfumed moisturising cream every day. During treatment and for several months afterwards, you’ll be more sensitive to the sun and your skin may burn more easily than usual. You can still go out in the sun, but use a suncream with a sun protection factor (SPF) of at least 30, and cover up with clothing and a hat. Your skin may darken. It will return to its normal colour after you finish treatment.
Always tell your doctor or nurse about any skin changes. They can give you advice and may prescribe creams or medicines to help. Any changes to your skin are usually temporary and improve when treatment finishes.
Effects on the heart
Some of the drugs used to treat ALL may affect the heart muscle. The doses of the chemotherapy drugs are very carefully monitored to reduce the risk of this happening. You may have heart tests (such as cardiac echograms) from time to time.
Having chemotherapy can affect your sex life, although not everyone finds this. Side effects such as tiredness, feeling sick or weak can reduce your sex drive and make having sex difficult. Chemotherapy shouldn’t have a long-term effect on your sex life. The side effects will gradually wear off when your treatment is finished.
Usually there’s no medical reason to stop having sex during chemotherapy . But if you have low platelets or a low white blood cell count, you may be advised to avoid penetrative sex until your blood count improves.
Protecting your partner
It’s not known if chemotherapy drugs pass into semen or vaginal fluids. Doctors usually advise you to use condoms for a few days after chemotherapy to protect your partner.
Remember that cancer can’t be passed on to your partner and sex won’t make the cancer worse.
It’s not advisable to become pregnant or father a child while having any of the chemotherapy drugs used to treat leukaemia as they may harm the developing baby. It is important to use effective contraception during your treatment and for up to a year afterwards. You can discuss this with your doctor or specialist nurse.