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Patient information - Myelodysplastic syndrome - Azacitidine

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This information sheet outlines your treatment. It should be reviewed together with your doctor, nurse or pharmacist to address any questions or concerns.

The treatment schedule below explains when you will receive the medicines and how they are given.  Your doctor, nurse or pharmacist will be able to explain how your treatment works in more detail.

The treatment schedule below explains how the drug for this treatment is given. It may be given to treat Myelodysplastic syndrome (MDS) or Chronic Myelomonocytic Leukaemia (CMML). 

Azacitidine
This treatment cycle is repeated every 28 days. You will have at least 6 cycles.  
Day Treatment How it is given How long it takes
1 to 7 Azacitidine (AY-za-SYE-ti-deen) By injection under the skin. The injections will be given into your thigh, abdomen or upper arm and the site will be rotated each time to reduce injection site reactions. About 5 minutes

Note: you may be given azacitidine intravenously by a drip into a vein. While azacitidine is listed for Day 1 to 7 in the table above this is not practical for all cancer units and an alternative schedule may be used e.g. azacitidine for 5 days, followed by 2 day weekend break, then azacitidine for 2 days. Speak to your doctor or nurse for more information. 

Anticancer drugs (drugs used to treat cancer) can sometimes cause serious problems. It is important to get medical help immediately if you become unwell.

Emergency

IMMEDIATELY go to your nearest hospital Emergency Department, or contact your doctor or nurse if you have any of the following at any time:

Emergency contact details

Ask your doctor or nurse from your treating team who to contact if you have a problem

 

  • a temperature of 38ºC or higher
  • chills, sweats, shivers or shakes
  • shortness of breath
  • uncontrolled vomiting or diarrhoea
  • pain, tingling or discomfort in your chest or arms
  • you become unwell.
Daytime:
Night/weekend:
Other instructions:

During your treatment immediately tell the doctor or nurse looking after you if you get any of the following problems: 

  • pain, stinging, swelling or redness around the injection site
  • a skin rash, itching, feeling short of breath, wheezing, fever, shivers, or feeling dizzy or unwell in any way (allergic reaction).

Changes to your dose or treatment delays

Sometimes a treatment may be started at a lower dose or the dose needs to be changed during treatment. There may also be times when your treatment is delayed. This can happen if your doctor thinks you are likely to have severe side effects, if you get severe side effects, if your blood counts are affected and causing delays in treatment, or if you are finding it hard to cope with the treatment. This is called a dose reduction, dose change or treatment delay. Your doctor will explain if you need any changes or delays to your treatment and the reason why.

Blood tests and monitoring

Anti-cancer drugs can reduce the number of blood cells in your body. You will need to have regular blood tests to check that your blood cell count has returned to normal. If your blood count is low, your treatment may be delayed until it has returned to normal. Your doctor or nurse will tell you when to have these blood tests.

Other medications given during this treatment

  • Anti-sickness (anti-nausea) medication: you may be given some anti-sickness medication. Make sure you take this medication as your doctor or nurse tells you, even if you don’t feel sick. This can help to prevent the sickness starting.
  • Antidiarrhoeals: you may be given some medication to treat diarrhoea. Your doctor or nurse will tell you how and when to take your antidiarrhoeal medication.
  • Laxatives: you may be given some medication to prevent or treat constipation. Your doctor or nurse will tell you how and when to take the laxatives.
  • Supportive medicines: you may need to take some medicines to help stop infections and to help stop or lower some of the side effects of your treatment. Your doctor or nurse will tell you how and when to take these medicines.

Cancer treatments can cause damage to normal cells in your body, which can cause side effects. Everyone gets different side effects, and some people will have more problems than others.

The table below shows some of the side effects you may get with this treatment. You are unlikely to get all of those listed and you may also get some side effects that have not been listed.

Tell your doctor or nurse about any side effects that worry you. Follow the instructions below and those given to you by your doctor or nurse.

Immediate (onset hours to days)

Headache

  • You can take paracetamol if you have a headache.
  • Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you get a very bad headache that is not helped by pain medication.

Allergic reaction

  • Allergic reactions are uncommon but can be life threatening.
  • If you feel unwell during the infusion or shortly after it, or:
    • get a fever, shivers or shakes
    • feel dizzy, faint, confused or anxious
    • start wheezing or have difficulty breathing
    • have a rash, itch or redness of the face

While you are in hospital: Tell your doctor or nurse immediately.

After you leave: Contact your doctor or nurse immediately, or go to the nearest hospital Emergency Department.

Injection-site reaction

  • At the injection site you may get pain, redness, swelling or bruising.
  • These symptoms are usually not serious.
  • Tell your doctor or nurse immediately if you notice any redness or pain during or after treatment.

Nausea and vomiting

  • You may feel sick (nausea) or be sick (vomit).
  • Take your anti-sickness medication as directed even if you don’t feel sick.
  • Drink plenty of fluids (unless you are fluid restricted).
  • Eat small meals more frequently.
  • Try food that does not require much preparation.
  • Try bland foods like dry biscuits or toast.
  • Gentle exercise may help with nausea.
  • Ask your doctor or nurse for eviQ patient information - Nausea and vomiting during cancer treatment. 
  • Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you have uncontrolled vomiting or feel dizzy or light-headed.

Early (onset days to weeks)

Infection risk (neutropenia)

  • This treatment lowers the amount of white blood cells in your body. The type of white blood cells that help to fight infection are called neutrophils. Having low level of neutrophils is called neutropenia. If you have neutropenia, you are at greater risk of getting an infection. It also means that your body can’t fight infections as well as usual. This is a serious side effect, and can be life threatening.
  • Wash your hands often.
  • Keep a thermometer at home and take your temperature regularly, and if you feel unwell.
  • Do your mouth care regularly.
  • Inspect your central line site (if you have one) daily for any redness, pus or swelling.
  • Limit contact with people who are sick.
  • Learn how to recognise the signs of infection.
  • Ask your doctor or nurse for eviQ patient information - Infection during cancer treatment.
  • Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you get any of the following signs or symptoms:
    • a temperature of 38°C or higher
    • chills, shivers, sweats or shakes
    • a sore throat or cough
    • uncontrolled diarrhoea
    • shortness of breath
    • a fast heartbeat
    •  become unwell even without a temperature.

Low platelets (thrombocytopenia)

  • This treatment lowers the amount of platelets in your blood. Platelets help your blood to clot. When they are low, you are at an increased risk of bleeding and bruising.
  • Try not to bruise or cut yourself.
  • Avoid contact sport or vigorous exercise. 
  • Clear your nose by blowing gently.
  • Avoid constipation.
  • Brush your teeth with a soft toothbrush.
  • Don't take aspirin, ibuprofen or other similar anti-inflammatory medications unless your doctor tells you to.
  • Tell your doctor or nurse if you have any bruising or bleeding. 
  • Tell your doctor or nurse immediately, or go to your nearest hospital Emergency Department if you have any uncontrolled bleeding.

Stomach pain

  • You may get:
    • dull aches
    • cramping or pain
    •  bloating or flatulence (gas).
  • Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you have stomach pain that you are unable to control.

Appetite loss (anorexia)

  • You may not feel like eating.
  • Try to avoid drinking fluids at meal times.
  • Try to eat small meals or snacks regularly throughout the day.
  • Try to eat food that is high in protein and calories.
  • If you are worried about how much food you can eat, or if you are losing weight, ask to speak to a dietitian.

Joint and muscle pain and stiffness

  • You may get muscle, joint or general body pain and stiffness.
  • Applying a heat pack to affected areas may help.
  • Talk to your doctor or nurse about other ways to manage these symptoms. You may need medication to help with any pain.

Constipation

  • You may have bowel motions (stools, poo) that are less frequent, harder, smaller, painful or difficult to pass.
  • You may also get:
    • bloating, cramping or pain
    • a loss of appetite 
    •  nausea or vomiting.
  • Drink plenty of fluids (unless you are fluid restricted).
  • Eat plenty of fibre-containing foods such as fruit, vegetables and bran.
  • Take laxatives as directed by your doctor.
  • Try some gentle exercise daily.
  • Tell your doctor or nurse if you have not opened your bowels for more than 3 days.

Diarrhoea

  • You may get bowel motions (stools, poo) that are more frequent or more liquid.
  • You may also get bloating, cramping or pain.
  • Take your antidiarrhoeal medication as directed by your doctor.
  • Drink plenty of fluids (unless you are fluid restricted).
  • Eat and drink small amounts more often.
  • Avoid spicy foods, dairy products, high fibre foods, and coffee.
  • Ask your doctor or nurse for eviQ patient information - Diarrhoea during cancer treatment. 
  • Tell your doctor or nurse immediately, or go to your nearest hospital Emergency Department if your diarrhoea is not controlled, you have 4 or more loose bowel motions per day, and if you feel dizzy or light-headed.

Tiredness and lack of energy (fatigue)

  • You may feel very tired, have no energy, sleep a lot, and not be able to do normal activities or things you enjoy.
  • Do not drive or operate machinery if you are feeling tired.
  • Nap for short periods (only 1 hour at a time)
  • Prioritise your tasks to ensure the best use of your energy.
  • Eat a well balanced diet and drink plenty of fluids (unless you are fluid restricted).
  • Try some gentle exercise daily.
  • Allow your friends and family to help.
  • Tell your doctor or nurse if you get any of the symptoms listed above.

Late (onset weeks to months)

Low red blood cells (anaemia)

  • You may feel dizzy, light-headed, tired and appear more pale than usual.
  • Tell your doctor or nurse if you have any of these signs or symptoms. You might need a blood transfusion.
  • Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you have any chest pain, trouble breathing, or feel like your heart is racing.

Chemotherapy safety

  • Learn how to keep you and your family safe while you are having anticancer drugs.
  • See our patient information sheet - Chemotherapy safety at home. 

Blood clot risk

  • Cancer and anticancer drugs can increase the risk of a blood clot (thrombosis).
  • Tell your doctor if you have a family history of blood clots.
  • A blood clot can cause pain, redness, swelling in your arms or legs, shortness of breath or chest pain.
  • If you have any of these symptoms go to your nearest hospital Emergency Department.

Medications and vaccinations

  • Before you start treatment, tell your doctor and pharmacist about any medications you are taking, including over-the-counter products, vitamins or herbal supplements. 
  • Don’t stop or start any medications during treatment without talking to your doctor and pharmacist first.
  • Paracetamol is safe to take if you have a headache or other mild aches and pains. It is recommended that you avoid taking aspirin, ibuprofen and other anti-inflammatory type medications for pain while you are having treatment. However, if these medications have been prescribed by your doctor, do not stop taking them without speaking with your doctor.
  • Do not have any vaccinations without discussing with the doctor who is managing your cancer treatment.
  • People you live with should be fully vaccinated, including having live vaccines according to the current vaccination schedule. Extra care needs to be taken with hand washing and careful disposal of soiled nappies for infants who have recently received the rotavirus vaccine.

Other medical and dental treatment

  • If you go to hospital or any other medical appointment (including dental appointments), always tell the person treating you that you are receiving anticancer drugs.
  • Before you have any dental treatment, talk to your doctor. 

Diet and food safety 

  • While you are receiving this treatment it is important that you try to maintain a healthy diet.
  • Speak to your doctor or nurse about whether drinking alcohol is safe with your treatment.
  • If you have any concerns about recent weight loss or weight gain or questions about your diet, ask to speak to a dietitian.
  • Avoid drinking or cooking with untreated water (e.g. water from rainwater tanks, bores or rivers) due to risk of contamination. If you intend to drink or cook with rainwater, you should bring it to a boil and allow the water to cool down before drinking or cooking with it. For more information see the NSW Health - Rainwater tanks opens in a new tab or window webpage.
  • There are some foods that may cause infection in high risk individuals and should be avoided. For more information on foods to avoid and food hygiene please ask for a copy of the Listeria and food brochure opens in a new tab or window.

Fertility

  • Some cancer treatments can reduce your fertility. This can make it difficult or impossible to get pregnant or father a child.
  • Talk to your doctor or nurse before you start any treatment. Depending on your situation there may be fertility sparing options available to you and/or your partner, discuss these with your doctor or nurse. 

Pregnancy and breastfeeding 

  • Some cancer treatments can be dangerous to unborn babies. Talk to your doctor or nurse if you think there is any chance that you could be pregnant.
  • Do not try to get pregnant or father a child during this treatment. Contraception should be used during treatment and after stopping treatment. Ask your doctor or nurse about what type of contraception you should use.
  • If you are planning pregnancy/fatherhood after completing this treatment, talk to your doctor. Some doctors advise waiting between 6 months and 2 years after treatment.
  • Do not breastfeed if you are on this treatment, as anti-cancer medications can also pass into breast milk.

Sex life and sexuality 

  • The desire to have sex may decrease as a result of this treatment or its side effects. 
  • Your emotions and the way you feel about yourself may also be affected by this treatment. 
  • It may help to discuss your concerns with your partner and doctor or nurse.

Risk of developing a second cancer 

  • Some anticancer treatments can increase your chance of developing a second cancer, this is rare. Your doctor will discuss with you the specific risks of your treatment.

Quitting smoking

  • It is never too late to quit smoking. Quitting smoking is one of the best things you can do to help your treatment work better.
  • There are many effective tools to improve your chances of quitting.
  • Talk to your treating team for more information and referral to a smoking cessation support service.

Staying active

  • Research shows that exercise, no matter how small, has many benefits for people during and after cancer treatment.
  • Talk to your doctor before starting an exercise program. Your doctor can advise whether you need a modified exercise program.

For more information about cancer treatment, side effects and side effect management see our Patient and carers section. 

Telephone support

  • Call Cancer Council on 13 11 20 for cancer information and support
  • Call the Leukaemia Foundation on 1800 620 420 (Mon to Fri 9am­ – 5pm)
  • Call the Lymphoma Nurse Support Line on 1800 953 081 (Mon to Fri 9am - 5pm)
  • Call the Myeloma Australia Support Line on 1800 693 566 (Mon to Fri 9am - 5pm)

Haematology, transplant and cellular therapy information

General cancer information and support

Quit smoking information and support

Quitting smoking is helpful even after you have been diagnosed with cancer. The following resources provide useful information and support to help you quit smoking. Talk to your treating team about any other questions you may have.

This document is a guide only and cannot cover every possible situation. Your treating team will consider your individual situation when making decisions about your care. Contact your doctor, nurse, pharmacist, or radiation therapist if you have any questions or concerns about your treatment, or you are having problems coping with side effects. While eviQ aims to provide reliable information, eviQ and the Cancer Institute NSW do not endorse or accept responsibility for the accuracy, currency, reliability or correctness of the content of linked external information sources. Use of this document is subject to eviQ’s disclaimer available at www.eviQ.org.au

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The currency of this information is guaranteed only up until the date of printing, for any updates please check:

https://www.eviq.org.au/pi/1173

06 Jun 2025