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Side effects of decitabine (Dacogen)

Find out about the side effects of the chemotherapy drug decitabine. 

Tell your doctor or nurse if you have any side effects so they can help you manage them. Your nurse will give you a contact number to ring if you have any questions or problems. If in doubt, call them.

Contact your doctor or nurse immediately if any of your side effects get severe or if you have signs of infection, including a temperature above 37.5C.

The side effects may be different if you are having decitabine with other cancer treatments.

Common side effects

Each of these effects happens in more than 1 in 10 people (10%). You might have one or more of them.

Signs of an infection include headaches, aching muscles, a cough, a sore throat, pain passing urine, or feeling cold and shivery.

Contact your treatment centre straight away if you have any of these signs or if your temperature goes above 37.5C. Severe infections can be life threatening.

Cancer treatments can reduce the number of white blood cells in the blood. This increases your risk of infections. White blood cells help fight infections.

When the level is very low it is called neutropenia (pronounced new-troh-pee-nee-ah).

You have antibiotics if you develop an infection. You might have them as tablets or as injections into the bloodstream (intravenously). To have them into your bloodstream you need to go into hospital.

Chemotherapy makes the level of red blood cells fall (anaemia). Red blood cells contain haemoglobin, which carries oxygen around the body. When the level of red blood cells is low you have less oxygen going to your cells. This can make you breathless and look pale. Tell your doctor or nurse if you feel breathless.

You have regular blood tests to check your red blood cell levels. You might need a blood transfusion if the level is very low. After a transfusion, you will be less breathless and less pale.

You can also feel tired and depressed when your blood count is low and feel better once it is back to normal. The levels can rise and fall during your treatment. So it can feel like you are on an emotional and physical roller coaster.

You might notice you:

  • bruise more easily
  • have nosebleeds
  • have bleeding gums when you brush your teeth

This is due to a drop in the number of platelets that help clot your blood.

If your platelets get very low you may have lots of tiny red spots or bruises on your arms or legs called petechiae.

Tell your doctor or nurse straight away if you have petechiae.

You have a platelet transfusion if your platelet count is very low. It is a drip of a clear fluid containing platelets. It takes about 15 to 30 minutes. The new platelets start to work right away. 

Tell your doctor or nurse if you have diarrhoea. They can prescribe medicine to help you. 

Drink at least 2.5 litres of fluid a day. This helps to keep you hydrated.

Ask your nurse about soothing creams to apply around your back passage (rectum). The skin in that area can get very sore and even break if you have severe diarrhoea.

Contact your doctor or nurse immediately if you have diarrhoea 4 or more times a day, or any diarrhoea at night.

Diarrhoea affects around 3 out of 10 people (30%). 

You might feel sick or be sick. Anti sickness injections and tablets can control it. Tell your doctor or nurse if you feel sick. You might need to try different anti sickness medicines to find one that works.

Tips 

  • Avoid eating or preparing food when you feel sick.
  • Avoid hot fried foods, fatty foods or foods with a strong smell.
  • Eat several small meals and snacks each day.
  • Relaxation techniques help control sickness for some people.
  • Ginger can help – try it as crystallised stem ginger, ginger tea or ginger ale.
  • Try fizzy drinks.
  • Sip high calorie drinks if you can’t eat.

Let your doctor or nurse know if you have headaches. They can give you painkillers such as paracetamol to help.

Headaches affect just over 1 in 10 people (10%). 

You might have changes in levels of minerals and salts in your blood, such as low magnesium and potassium. 

 You have regular blood tests during treatment to check this.

Let your doctor or nurse know if you have cramping in your arm or leg muscles, tingling or numbness, palpitations (feeling your heart beat irregularly), or if you feel faint.

You might feel some pain from your muscles and joints. Speak to your doctor or nurse about what painkillers you can take to help with this.

Tell your doctor or nurse if you’re breathless or have a cough. This could be due to an infection, such as pneumonia. 

Contact your treatment centre straight away if you have chest pain, breathlessness or if your temperature goes above 38 C.

Talk to your doctor or nurse if you’re having problems sleeping. It can help to change a few things about when and where you sleep.

Tips

  • Go to bed and get up at the same time each day.
  • Make sure the temperature is right.
  • Spend time relaxing before you go to bed - have a bath, read or listen to music.
  • Do some light exercise each day to help tire yourself out.
  • Avoid caffeine (coffee, tea, chocolate and cola drinks) after early afternoon.
  • Have a light snack before you go to bed to stop hunger waking you up.

To control a nosebleed, sit down and pinch the soft part of your nose above your nostrils. Lean forward and breathe through your mouth. Do this for at least 10 to 15 minutes.

Tell your doctor or nurse if you have severe nosebleeds.

You might get a high temperature (fever), weakness and chills. Contact your doctor or nurse if you have this.

You have regular blood and urine tests to check this. If you have diabetes you may need to check your blood sugar levels more often than usual. 

Occasional side effects

Each of these effects happens in more than 1 in 100 people (1%). You might have one or more of them.

Your mouth might get sore. You will have mouth washes to keep your mouth healthy.

You can have painkillers to reduce the soreness. Take them half an hour before meals to make eating easier.

Tell your doctor or nurse if your mouth is sore.

A small number of people have an allergic reaction while having this treatment. 

Tell your doctor or nurse immediately if you have any of these symptoms: 

  • a rash
  • shortness of breath
  • redness or swelling of the face
  • feeling hot
  • dizziness
  • a sudden need to pass urine

This drug can cause changes to the blood supply to the brain which can lead to a stroke.

Contact your treatment centre urgently if you have symptoms of a stroke. The symptoms include your face drooping to one side or you can’t smile normally. You may not be able to lift your arms or they become weak or numb. Or your speech may be slurred or garbled.

You might have darker poo, almost black. This can be due to bleeding in the stomach or bowel. Let your nurse or doctor know if you have this. 

You might have a runny nose while having treatment.

Your nose might also be sore. 

You might get pain in your sinuses. Let your doctor or nurse know if this is problematic for you. 

Rare side effects

Each of these effects happens in fewer than 1 in 100 people (1%). You might have one or more of them.

Red, lumpy painful patches on the skin with a high temperature and high white blood cell levels is called acute febrile neutrophilic dermatosis or Sweets syndrome. 

Tell your doctor or nurse straight away if you have them.

Inflammation of the bowel can cause abdominal pain, bloating or diarrhoea. Speak to your doctor if you have these symptoms.

About decitabine

More information about this treatment

We haven't listed all the very rare side effects of this treatment. For further information see the electronic Medicines Compendium (eMC) website.

You can report any side effect you have that isn’t listed here to the Medicines Health and Regulatory Authority (MHRA) as part of their Yellow Card Scheme.

Information and help

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