Azacitidine is used to treat myelodysplastic syndromes (MDS) and certain types of leukaemia.
Azacitidine may be given when a stem cell transplant is not possible to treat:
- myelodysplastic syndromes (MDS)
- acute myeloid leukaemia (AML)
- chronic myelomonocytic leuikaema (CMML).
Your doctor will talk to you about this treatment and its possible side effects before you agree (consent) to have treatment.
You will be given azacitidine in the chemotherapy day unit. A chemotherapy nurse will give it to you.
During treatment you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse, and a specialist pharmacist. This is who we mean when we mention doctor, nurse or pharmacist 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 your blood cells are at a safe level to have chemotherapy.
You will see a doctor or nurse before you have chemotherapy. They will talk to you about your blood results and ask you how you have been feeling. If your blood results are okay, the pharmacist will prepare your chemotherapy. Your nurse will tell you when your treatment is likely to be ready.
Your nurse usually gives you anti-sickness (anti-emetic) drugs before the chemotherapy.
You have azacitidine as an injection under the skin (subcutaneously). It can be given in your tummy, upper arm or thigh.
Your course of chemotherapy
You usually have a course of several cycles of treatment over a few months. After this you will see your doctor. You usually continue the treatment for as long as it is helping.
Your nurse will give you the injections daily for 7 days. Then you have a rest period of 21 days. After this, you start another cycle of treatment in the same way. Some people may have the injections over a slightly different time. Your nurse or doctor will discuss your treatment plan with you.
We explain the most common side effects of this treatment here. We also include some less common side effects.
You may get some of the side effects we mention, but you are unlikely to get all of them. If you are also having treatment with other cancer drugs, you may have some side effects that we have not listed here. Always tell your doctor, nurse or pharmacist about any side effects you have.
Your doctor can give you drugs to help control some side effects. It is important to take them exactly as your nurse or pharmacist explains. This means they will be more likely to work for you. Your nurse will give you advice about managing your side effects. After your treatment is over, most side effects start to improve.
Serious and life-threatening side effects
Some cancer treatments can cause severe side effects. Rarely, these may be life-threatening. Your cancer doctor or nurse can explain the risk of these side effects to you.
Contact the hospital
Your nurse will give you telephone numbers for the hospital. If you feel unwell or need advice, you can call them at any time of the day or night. Save these numbers in your phone or keep them somewhere safe.
We cannot list every side effect for this treatment. There are some rare side effects that are not listed. You can visit the electronic Medicines Compendium (eMC) for more detailed information.
Some people have an allergic reaction while having this treatment. Signs of a reaction can include:
- feeling hot or flushed
- a skin rash
- feeling dizzy
- a headache
- feeling breathless or wheezy
- swelling of your face or mouth
- pain in your back, tummy or chest.
Your nurse will check you for signs of a reaction during your treatment. If you feel unwell or have any of these signs, tell them straight away. If you do have a reaction, it can be treated quickly.
Sometimes a reaction happens a few hours after treatment. If you develop any signs or feel unwell after you get home, contact the hospital straight away.
Problems at the injection site
Azacitidine is given as an injection into the fatty tissue under the skin (subcutaneous injection). It may cause redness, itching, bruising and swelling where the injection is given (injection site).
This can be uncomfortable, but usually improves after several days. 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.
Risk of infection
This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If the number of white blood cells is low, you are more likely to get an infection. A low white blood cell count is sometimes called neutropenia.
Your doctor may give you antibiotics and other drugs to try to stop you getting an infection. These are called prophylactic medicines.
An infection can be very serious when the number of white blood cells is low. It is important to get any infection treated as soon as possible. Contact the hospital straight away on the 24-hour contact number you have been given if:
- your temperature goes over 37.5°C (99.5°F)
- you suddenly feel unwell, even with a normal temperature
- you have symptoms of an infection
- your temperature goes below 36°C (96.8°F).
Symptoms of an infection include:
- feeling shivery and shaking
- a sore throat
- a cough
- needing to pass urine (pee) a lot, or discomfort when you pass urine.
It is important to follow any specific advice your cancer treatment team gives you.
The number of white blood cells will usually return to normal before your next treatment. You will have a blood test before having more treatment. If your white blood cell count is low, your doctor may delay your treatment for a short time, until your cell count increases.
Bruising and bleeding
This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot.
If the number of platelets is low, you may bruise or bleed easily. You may have:
- bleeding gums
- heavy periods
- blood in your urine (pee) or stools (poo)
- tiny red or purple spots on the skin that may look like a rash.
Tell your doctor if you have any unexplained bruising or bleeding. You may need a drip to give you extra platelets. This is called a platelet transfusion.
Anaemia (low number of red blood cells)
This treatment can reduce the number of red blood cells in your blood. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may have symptoms such as:
- pale skin
- lack of energy
- feeling breathless
- feeling dizzy and light-headed.
Tell your doctor or nurse if you have these symptoms.
If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.
Your doctor will give you anti-sickness drugs to help prevent or control sickness during your treatment. Take the drugs exactly as your nurse or pharmacist tells you. It is easier to prevent sickness than to treat it after it has started.If you feel sick, take small sips of fluids often and eat small amounts regularly. It is important to drink enough fluids. If you continue to feel sick, or are sick (vomit) more than once in 24 hours, contact the hospital as soon as possible. They will give you advice. Your doctor or nurse may change the anti-sickness drug to one that works better for you.
Loss of appetite
This treatment can affect your appetite. Do not worry if you do not eat much for a day or two. But if your appetite does not come back after a few days, tell your nurse or dietitian. They will give you advice. They may give you food or drink supplements.
This treatment may cause diarrhoea. Diarrhoea means passing more stools (poo) than is usual for you, or having watery or loose stools. If you have a stoma, it will be more active than usual.
If you have diarrhoea:
- try to drink at least 2 litres (3½ pints) of fluids each day
- avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods
- contact the hospital for advice.
This treatment can cause constipation. Constipation means that you are not able to pass stools (poo) as often as you normally do. It can become difficult or painful. Here are some tips that may help:
- Drink at least 2 litres (3½ pints) of fluids each day.
- Eat high-fibre foods, such as fruit, vegetables and wholemeal bread.
- Do regular gentle exercise, like going for short walks.
If you have constipation, contact the hospital for advice. Your doctor can give you drugs called laxatives to help.
Tummy (abdominal) pain
You may get pain in your tummy with this drug. Tell your doctor or nurse if this happens.
Feeling tired is a common side effect of this treatment. It is often worse towards the end of treatment and for some weeks after it has finished. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can give you more energy.
If you feel sleepy, do not drive or use machinery.
This treatment may cause headaches. If you have headaches, tell your doctor. They may give you painkillers to help.
If your headache is severe, or you feel drowsy or have vision problems, contact your doctor straight away.
Muscle or joint pain
You may get pain in your muscles or joints for a few days after treatment. If this happens, tell your doctor so they can give you painkillers. Tell them if the pain does not get better. Having warm baths and taking regular rests may help.
Sore mouth and throat
This treatment may cause a sore mouth and throat. You may also get mouth ulcers. This can make you more likely to get a mouth or throat infection. Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.
If your mouth or throat is sore:
- tell your nurse or doctor – they can give you a mouthwash or medicines to help
- try to drink plenty of fluids
- avoid alcohol, tobacco, and foods that irritate your mouth and throat.
Sucking ice chips may sometimes help relieve mouth or throat pain. But if you are having radiotherapy to the head or neck, do not suck on ice. It can cause damage.
This treatment may affect your skin. If your skin feels dry, try using an unperfumed moisturising cream every day. Always tell your nurse or doctor if you get a rash, itching skin or any other changes. They can give you advice and may prescribe creams or medicines to help.
Very rarely, this treatment can cause sores in the skin which can be serious. If you notice sores or broken areas of skin, tell your doctor or nurse straight away.
Your hair may get thinner. But you are unlikely to lose all the hair from your head. Hair loss usually starts after your first or second treatment. It is almost always temporary, and your hair will usually grow back after treatment finishes. Your nurse can talk to you about ways to cope with hair loss.
Effects on the kidneys
This treatment can affect how your kidneys work. This is usually mild and goes back to normal after treatment finishes. You will have blood tests to check how well your kidneys are working. Tell your doctor or nurse if you have blood in your urine (pee) or you are passing urine less than usual.
It is important to drink at least 2 litres (3½ pints) of non-alcoholic fluid each day to help protect your kidneys.
This treatment can cause difficulty sleeping. Tell your doctor or nurse if this is a problem for you. There are some things you can do to try to improve your sleep. This includes having a regular bedtime hour and avoiding drinks containing caffeine.
Dizziness and anxiety
You may feel dizzy with this treatment. Some people may feel anxious, and sometimes people may become confused. Tell your doctor if you notice any of these side effects.
Effects on the heart
This drug may cause fluid to build up around the heart. Sometimes, it can cause swelling around the heart.
Contact a doctor straight away if you:
- have pain or tightness in your chest
- feel breathless or dizzy
- feel your heart is beating too fast or too slowly.
Other conditions can cause these symptoms, but it is important to get them checked by a doctor. You may need tests to check how your heart is working.
Effects on the lungs
This treatment can cause changes to the lungs. Tell your doctor if you develop:
- a cough
You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.
Tumour lysis syndrome (TLS)
This treatment may cause cancer cells to die and break down very quickly. When cancer cells break down, it can lead to a sudden release of chemicals into the blood. This is called tumour lysis syndrome (TLS).
Your kidneys can usually keep these chemicals in balance, but they might not be able to cope with very large amounts. The chemical imbalance can affect how well your kidneys work or cause problems with your heart rhythm.
If you are at risk of TLS, you will have regular blood tests to check the levels of these chemicals. You may be given a drug called allopurinol.
Blood clot risk
Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:
- throbbing pain, redness or swelling in a leg or arm
- suddenly feeling breathless or coughing
- sharp chest pain, which may be worse when you cough or take a deep breath.
If you have any of these symptoms, contact the hospital straight away on the 24-hour contact number you have been given. If you cannot get through to your doctor, call the NHS urgent advice number on 111.
A blood clot is serious, but it can be treated with drugs that thin the blood (anticoagulants). Your doctor or nurse can give you more information.
You can help reduce the risk of developing a blood clot by:
- staying active during treatment
- drinking plenty of fluids, especially water.
You may be given anticoagulants to help prevent a clot.
Some medicines can affect how this treatment works or be harmful when you are having it. Always tell your cancer doctor about any drugs you are taking or planning to take, such as:
- medicines you have been prescribed
- medicines you buy in a shop or chemist
- vitamins, herbal drugs and complementary therapies.
Tell other doctors, pharmacists or dentists who prescribe or give you medicines that you are having this cancer treatment.
You can visit the electronic Medicines Compendium (eMC) for more detailed information about your treatment.
Vaccinations can reduce your risk of getting certain infections. Your doctor or nurse may talk to you about having vaccinations.
Doctors usually recommend that people with cancer have a flu vaccination and a coronavirus vaccination. These are both inactivated vaccinations that can help reduce the risk of infection. People with weak immune systems can have these, as they are not live vaccinations.
If your immune system is weak, you need to avoid live vaccinations. This is because they can make you unwell. Live vaccines, such as shingles, contain a very weak version of the illness they are vaccinating you against. Your cancer doctor or GP can tell you more about live and inactivated vaccinations.
Your doctor will advise you not to get pregnant or make someone pregnant during this treatment and for at least 3 months afterwards. The drugs may harm the developing baby. It is important to use contraception during your treatment.
You are advised not to breastfeed while having this treatment, or for some time after treatment finishes. This is because the drugs could be passed to the baby through breast milk.
Your doctor or nurse can give you more information.
If you have sex in the first few days after this treatment, you should use barrier protection such as a condom or dental dam. This will protect your partner if any of the drug is in your semen or vaginal fluids.
Medical and dental treatment
If you need medical treatment for any reason other than cancer, always tell the doctors and nurses you are having cancer treatment. Give them the contact details for your cancer doctor so they can ask for advice.
If you think you need dental treatment, talk to your cancer doctor or nurse. Always tell your dentist you are having cancer treatment.
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert health professionals and people living with cancer.
Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.