Cytarabine, which is also called Ara C or cytosine arabinoside, is a chemotherapy drug used to treat acute myeloid leukaemia (AML). It may also be used to treat some other types of leukaemia and lymphomas.
This information should be ideally read with our general information about chemotherapy and your type o f cancer
How cytarabine is given
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You will be given cytarabine in the chemotherapy day unit or during a stay in hospital. A chemotherapy nurse will give it to you. During treatment you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse. This is who we mean when we mention doctor or nurse in this information.
Before or on the day of treatment, a nurse or person trained to take blood (phlebotomist) will take a blood sample from you. This is to check that it is okay for you to have chemotherapy.
You will also see a doctor or nurse before you have chemotherapy. They will ask you about how you have been. If your blood results are alright on the day of your treatment, the pharmacist will prepare your chemotherapy. Your nurse will tell you when your treatment is likely to be ready.
Your nurse gives you anti-sickness drugs and sometimes a steroid before you start. Cytarabine is then given in one of the following ways:
as an injection under the skin (subcutaneous injection)
by injection into the spinal fluid (intratheca)
through a short thin tube (cannula) that the nurse puts into a vein in your arm or hand
through a fine tube that goes under the skin of your chest and into a vein close by (central line)
through a fine tube that is put into a vein in your arm and goes up into a vein in your chest (PICC line).
Your nurse can give you cytarabine as a slow injection or drip (infusion) into your cannula or line. They usually run the drip through a pump, which gives you the treatment over a set time.
When the chemotherapy is being given
Some people might have side effects while they are having the chemotherapy:
Problems at the injection site
Cytarabine as an injection into the fatty tissue under the skin can cause redness and swelling where it’s given (injection site). This can be uncomfortable. To reduce the irritation, your nurse will change the injection site with each injection they give. They can also give you advice on how to relieve any discomfort.
Your course of chemotherapy
Chemotherapy is usually given as a course of several sessions (cycles) of treatment over a few months. The length of your treatment and the number of cycles you have will depend on the type of cancer you're being treated for. Your nurse or doctor will discuss your treatment plan with you.
Chemotherapy by injection into the spinal fluid
Cytarabine can be given into the spinal fluid to allow the drug to reach the spinal cord and brain. This is called intrathecal chemotherapy.
The doctor numbs an area of skin over your spine with local anaesthetic. They gently insert a needle between two of the spinal bones. This is called a lumbar puncture. They inject the chemotherapy drug through this needle into the spinal fluid. Your cancer doctor and nurse will explain everything in advance so you know what to expect. You may get a headache after a lumbar puncture. To help prevent this, you need to lie flat for a few hours afterwards and drink plenty of fluids.
Possible side effects of cytarabine
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We explain the most common side effects of cytarabine here. But we don’t include all the rare ones that are unlikely to affect you.
You may get some of the side effects we mention, but you are very unlikely to get all of them. If you are taking other chemotherapy drugs as well, you may have some side effects that we don’t list here. Always tell your doctor or nurse about any side effects you have.
Your doctor can prescribe drugs to help control some side effects. It is very important to take them exactly as your nurse or pharmacist has instructed. This means they will be more likely to work better for you. Your nurse will give you advice about managing your side effects. After your treatment is over, the side effects will start to improve.
Contact the hospital
Your nurse will give you telephone numbers for the hospital. You can call them if you feel unwell or need advice any time of day or night. Save these numbers in your phone or keep them somewhere safe.
Risk of infection
Cytarabine can reduce the number of white blood cells in your blood. This will make you more likely to get an infection. When the number of white blood cells is low, it’s called neutropenia. This can start seven days after treatment. You are most likely to get an infection 10–14 days after treatment.
Contact the hospital straight away on the contact number you’ve been given if:
your temperature goes over 37.5°C (99.5°F) or over 38°C (100.4°F), depending on the advice given by your chemotherapy team
you suddenly feel unwell, even with a normal temperature
you have symptoms of an infection – this can include feeling shaky, a sore throat, a cough or needing to pass urine often.
The number of white blood cells usually increases steadily and returns to normal before your next chemotherapy. You will have a blood test before having more chemotherapy. If your white blood cells are still low, your doctor may delay your treatment for a short time.
Bruising and bleeding
Cytarabine can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. Tell your doctor if you have any bruising or bleeding you can’t explain. This includes nosebleeds, bleeding gums, blood spots or rashes on the skin. Some people may need a drip to give them extra platelets.
Anaemia (low number of red blood cells)
Cytarabine can reduce the number of red blood cells in your blood. These cells carry oxygen around the body. If the number of red blood cells is low, you may be tired and breathless. Tell your doctor or nurse if you feel like this. If you are very anaemic, you may need a drip to give you extra red blood cells (blood transfusion).
This may happen in the first few days after chemotherapy.Your doctor will prescribe anti-sickness (anti-emetic) drugs to help prevent or control sickness. Take the drugs exactly as your nurse or pharmacist explains to you. It’s easier to prevent sickness than to treat it after it has started.
If you still feel sick or are vomiting, contact the hospital as soon as possible. They can give you advice and change the anti-sickness drug to one that works better for you.
Loss of appetite
You may people lose your appetite during your treatment. Try to eat small meals regularly. Don’t worry if you don’t eat much for a day or two. If your appetite doesn’t improve after a few days, let your nurse or dietitian know. They can give you advice on getting more calories and protein in your diet. They may give you food supplements or meal replacement drinks to try. Your doctor can prescribe some of these and you can buy them from chemists.
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.
Problems passing urine
Some people find it difficult to pass urine after having cytarabine. Tell your doctor or nurse straight away if this is a problem for you.
Changes in the way the kidneys and liver work
Treatment can affect how your kidneys and liver work. This is usually mild and goes back to normal after treatment. You will have blood tests before chemotherapy to check how well your kidneys and liver are working.
Tumour lysis syndrome (TLS)
Cytarabine may cause the cancer/leukaemia cells to break down very quickly. This releases uric acid (a waste product) into the blood. The kidneys usually get rid of uric acid but may not be able cope with large amounts. This can cause chemical imbalances in the blood that affect the kidneys and the heart. This is called tumour lysis syndrome (TLS).
To reduce the risk of TLS, your doctor may give you a drug called rasburicase. You will have this as a drip. You will also be given fluid through your drip to help protect your kidneys. You may only need rasburicase with the first treatment. After that, you can have tablets called allopurinol (zyloric ®) instead.
Your eyes may become watery and feel sore. Your doctor can prescribe eye drops to help with this. If your eyes get red and inflamed (conjunctivitis) tell your doctor. This is because you may need antibiotic eye drops.
Cytarabine may also make your eyes more sensitive to light and cause blurry vision and/or eye pain. Always tell your doctor or nurse if you have pain or notice any change in your vision.
Your mouth may become sore and you may get ulcers. This can make you more likely to get an infection in your mouth. Gently clean your teeth and/or dentures morning and night and after meals. Use a soft-bristled or children’s toothbrush. Your nurse might ask you to rinse your mouth regularly or use mouthwashes. It’s important to follow any advice you are given and to drink plenty of fluids.
Tell your nurse or doctor if you have any problems with your mouth. They can prescribe medicines to prevent or treat mouth infections and reduce any soreness.
Your hair will thin or you may lose all the hair from your head. This usually starts after your first or second cycle of chemotherapy. It is almost always temporary and your hair will grow back after chemotherapy ends. It is important to cover your head to protect your scalp when you are out in the sun. Your nurse can give you advice about coping with hair loss.
Feeling very tired is a common side effect. It’s often worse towards the end of treatment and for some weeks after it’s finished. Try to pace yourself and get as much rest as you need. It helps to balance this with some gentle exercise, such as short walks. If you feel sleepy, don’t drive or operate machinery.
Chemotherapy may affect your skin. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day. Cytarabine can cause a rash, which may be itchy.
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.
Soreness and redness of palms of hands and soles of feet
This is called palmar-plantar or hand-foot syndrome. It gets better when treatment ends. Your doctor or nurse may prescribe creams to improve the symptoms. It can help to keep your hands and feet cool and to avoid tight-fitting socks, shoes and gloves.
Muscle and/or joint pain
You may get pain in your joints or muscles for a few days after chemotherapy. Tell your doctor if this happens so they can prescribe painkillers. Let them know if the pain does not get better. Try to get plenty of rest. Taking regular warm baths may help.
Let your doctor know if you develop any pain in your tummy (abdomen). It can usually be controlled with mild painkillers.
Less common side effects of cytarabine
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Effects on the lungs
Cytarabine can cause changes to the lungs. These are more common if you are treated with higher doses of chemotherapy. Always tell your doctor if you develop wheezing, a cough, fever or feel breathless. You should also let them know if any existing breathing problems get worse. If necessary, they can arrange for you to have tests to check your lungs.
Effects on the nervous system
High doses of cytarabine can affect the nervous system. You may feel drowsy or confused, dizzy or unsteady. Tell your doctor or nurse straight away if you notice any of these symptoms. They may make some changes to your treatment if the symptoms become a problem for you. It’s important not to drive or operate machinery if you notice these effects. Rarely, this treatment can cause seizures (fits).
The side effects for intrathecal chemotherapy may be different from those mentioned here. Your doctor will talk to you about this. The most common side effect of a lumbar puncture is a headache. To help prevent this, you need to lie flat for a few hours afterwards and drink plenty of fluids.
Other information about cytarabine
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Blood clot risk
Cancer increases the chance of a blood clot (thrombosis) and chemotherapy can add to this. A clot can cause symptoms such as pain, redness and swelling in a leg, breathlessness and chest pain. Contact your doctor straight away if you have any of these symptoms. A blood clot is serious but your doctor can treat it with drugs that thin the blood. Your doctor or nurse can give you more information.
Reaction to cytarabine
Cytarabine may cause a reaction 6-12 hours after it’s been given. Signs of a reaction can include: a high temperature or chills, a rash; pain in the eyes, bones, tummy or chest. Tell your nurse straight away if you have any of these symptoms.
Some other medicines can interact with chemotherapy or be harmful when you are having chemotherapy. This includes medicines you can buy in a shop or chemist. Cytarabine interacts with digoxin and some other drugs.Tell your doctor about any medicines you are taking, including over-the-counter drugs, complementary therapies and herbal drugs.
Cytarabine may affect your fertility (being able to get pregnant or father a child). If you are worried about this, you can talk to your doctor or nurse before treatment starts.
Your doctor will advise you not to become pregnant or to father a child during treatment. This is because the drugs may harm a developing baby. It’s important to use effective contraception during and for a few months after chemotherapy. You can talk to your doctor or nurse about this.
If you have sex within the first couple of days of having chemotherapy you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluid.
Changes to your periods
Chemotherapy can sometimes stop the ovaries working. You may not get a period every month and they may eventually stop. In some women, this is temporary, but for others it is permanent and they start the menopause.
Women are advised not to breastfeed during treatment and for a few months after. This is in case there is chemotherapy in their breast milk.
Medical and dental treatment
If you need to go into hospital for any reason other than cancer, always tell the doctors and nurses that you are having chemotherapy. Give them contact details for your cancer doctor.
Talk to your cancer doctor or nurse if you think you need dental treatment. Always tell your dentist you are having chemotherapy.
This section has been compiled using a number of reliable sources including:
With thanks to: Kelly Baillie, Senior Clinical Pharmacist; and the people affected by cancer who reviewed this edition.
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