Dactinomycin (actinomycin D)

Dactinomycin is a type of chemotherapy drug. It is also known as actinomycin D. You pronounce dactinomycin as dac-tin-oh-mye-sin. 

It is a treatment for a number of different cancer types.

How does dactinomycin work?

Dactinomycin works by damaging the cancer cells' DNA. When DNA is damaged, a cell cannot divide into 2 new cells, so it helps to stop the cancer growing.

How do you have dactinomycin?

You have dactinomycin as a drip into your bloodstream (intravenously). 

You might have treatment through a long plastic tube that goes into a large vein in your chest. The tube stays in place throughout the course of treatment. This can be a:

• central line
• PICC line
• portacath

If you don't have a central line

You might have treatment through a thin short tube (a cannula) that goes into a vein in your arm. You have a new cannula each time you have treatment.

How often do you have dactinomycin?

When you have dactinomycin depends on your cancer type. You usually have dactinomycin with other cancer drugs, but you might have it on its own. It depends on the type of cancer you have as to which drugs you have it with. 

Your treatment team will give you more information about your treatment and what to expect.

Tests

You have blood tests before and during your treatment. They check your levels of blood cells and other substances in the blood. They also check how well your liver and kidneys are working.

What are the side effects of dactinomycin?

Side effects can vary from person to person. They also depend on what other treatments you're having. 

When to contact your team

Your doctor, nurse or pharmacist will go through the possible side effects. They will monitor you during treatment and check how you are at your appointments. Contact your advice line as soon as possible if:

• you have severe side effects 

• your side effects aren’t getting any better

• your side effects are getting worse

Early treatment can help manage side effects better. 

We haven't listed all the side effects here. Remember it is very unlikely that you will have all of these side effects. But you might have some of them at the same time.

Side effects 

There isn't enough information to work out how often these side effects might happen. You might have one or more of them. They include:

Risk of infection 

Increased risk of getting an infection is due to a drop in white blood cells. Symptoms include a change in temperature, aching muscles, headaches, feeling cold and shivery and generally unwell. You might have other symptoms depending on where the infection is.

Infections can sometimes be life threatening. You should contact your advice line urgently if you think you have an infection. 

Breathlessness and looking pale 

You might be breathless and look pale due to a drop in red blood cells. This is called anaemia. It can become severe with dactinomycin. Other symptoms include tiredness, headaches, and dizziness.

Bruising and bleeding 

This is due to a drop in the number of platelets in your blood. These blood cells help the blood to clot when we cut ourselves. You may have nosebleeds or bleeding gums after brushing your teeth. Or you may have lots of tiny red spots or bruises on your arms or legs (known as petechiae).

Blood clots

Blood clots can develop in the deep veins of your body, usually the leg. This is called deep vein thrombosis (DVT). A blood clot can be very serious if it travels to your lungs (pulmonary embolism), although this isn’t common.

Symptoms of a blood clot include:

•    pain, redness and swelling around the area where the clot is and may feel warm to touch
•    breathlessness
•    pain in your chest or upper back – dial 999 if you have chest pain
•    coughing up blood

Loss of appetite and weight loss

You might not feel like eating and may lose weight. Eating several small meals and snacks throughout the day can be easier to manage. You can talk to a dietitian if you are concerned about your appetite or weight loss. 

Feeling or being sick 

Feeling or being sick is usually well controlled with anti sickness medicines. It might help to avoid fatty or fried foods, eat small meals and snacks and take regular sips of water. Relaxation techniques might also help.

It is important to take anti sickness medicines as prescribed even if you don’t feel sick. It is easier to prevent sickness rather than treat it once it has started.

This usually happens a few hours after having treatment.

Diarrhoea 

Contact your advice line if you have diarrhoea. For example, in one day you have 2 or more loose bowel movements than usual. If you have a stoma , you might have more output than normal. Your doctor may give you anti diarrhoea medicine to take home with you after treatment.

Try to eat small meals and snacks regularly. It’s best to try to have a healthy balanced diet if you can. You don’t necessarily need to stop eating foods that contain fibre. But if your diet is normally very high in fibre, it might help to cut back on high fibre foods such as beans, nuts, seeds, dried fruit, bran and raw vegetables. 

Drink plenty to try and replace the fluid lost. Aim for 8 to 10 glasses per day.

Mouth sores and ulcers 

Mouth sores and ulcers can be painful. It helps to keep your mouth and teeth clean, drink plenty of fluids and avoid acidic foods such as lemons. Chewing gum can help to keep your mouth moist. Tell your doctor or nurse if you have ulcers.

Difficulty swallowing 

Let your doctor or nurse know straight away if you have any problems swallowing. This might include pain when swallowing food. 

Tiredness and weakness (fatigue)

You might feel very tired and as though you lack energy.

Various things can help you to reduce tiredness and cope with it, for example exercise. Some research has shown that taking gentle exercise can give you more energy. It is important to balance exercise with resting.

High temperature (fever)

Tell your healthcare team straightaway if you get a high temperature. Ask them if you can take paracetamol to help lower your temperature.

Tummy (abdominal) pain 

Tell your treatment team if you have tummy pains. They can check the cause and give you medicine to help. 

Dactinomycin may cause stomach ulcers. You might have some tummy pain, but you can also have other symptoms including indigestion, heartburn, and acid reflux. You might also feel or be sick.

Liver problems 

This includes inflammation of the liver and changes to the levels of liver enzymes. You have regular blood tests to check for this. 

You may also develop a condition in which some of the veins in the liver are blocked. This may cause liver damage and can be life threatening. 

A build up of fluid in your tummy (abdomen)

This is called ascites. You may notice that your clothes feel tighter and your tummy feels bloated. You might also find it difficult to sit comfortably or to move around. Tell your doctor if you think you have this. 

Changes to the levels of chemicals in your blood  

You might have low calcium levels in the blood. This can cause painful muscle spasms, cramps, or muscle twitching. You might also get numbness or tingling in your feet, hands, or around your mouth.

You might have changes to the levels of chemicals in your blood due to the breakdown of tumour cells. This is called tumour lysis syndrome. You have regular blood tests to check for any changes.

Inflammation of the lungs

This drug can cause inflammation of the lungs (pneumonitis). Let your doctor know if you have breathlessness, a high temperature and chills, extreme tiredness, a dry cough, or pain in your lungs when you take a deep breath.

Hair loss

You could lose all your hair. This includes your eyelashes, eyebrows, underarms, legs and sometimes pubic hair. Your hair will usually grow back once treatment has finished but it is likely to be softer. It may grow back a different colour or be curlier than before. 

Skin changes 

You might notice skin changes, such as dryness, itching and rashes similar to acne on your face, neck and trunk. 

Tell your doctor if you have any rashes or itching. Don't go swimming if you have a rash because the chlorine in the water can make it worse.

If your skin gets dry or itchy, using unperfumed moisturising cream may help. Check with your doctor or nurse before using any creams or lotions. Wear a high factor sun block if you’re going out in the sun.

You might also have soreness, a burning feeling, and dry or darker skin in the areas treated with radiotherapy in the past. 

Some people may develop a severe skin reaction that starts with tender red patches and leads to peeling or blistering of the skin. You might also feel feverish, and your eyes may be more sensitive to light. This is serious and could be life threatening.

Muscle pain 

You might have muscle pain during treatment. Let your treatment team know so they can advise you on how to reduce it.

Inflammation at your drip site

Tell your nurse straight away if you have any redness, swelling, pain or leaking at your drip site. 

Inflammation of the back passage (rectum)

Symptoms include bleeding and discharge, and the feeling that you want to have a poo.

Speak to your doctor or nurse or pharmacist if you have these symptoms.

Constipation

Constipation is easier to sort out if you treat it early. Drink plenty and eat as much fresh fruit and vegetables as you can. Try to take gentle exercise, such as walking. Tell your healthcare team if you think you are constipated. They can give you a laxative if needed.

Sore throat

Your throat might get sore. It may be painful to swallow drinks or food. 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 throat is sore.

Numbness of fingers and toes

Numbness or tingling in fingers or toes is often temporary and can improve after you finish treatment. Tell your healthcare team if you're finding it difficult to walk or complete fiddly tasks such as doing up buttons. 

Allergic reaction

A small number of people have an allergic reaction while having this treatment. Symptoms can include a rash, shortness of breath, redness or swelling of the face, feeling hot, dizziness, and a sudden need to pass urine.

Tell your doctor or nurse immediately if you have any of these symptoms or feel unwell at all while you are having the treatment or shortly afterwards.

Eye problems

Your sight can be affected by this treatment. You may notice some loss of sight or blurred vision. Or you might have pain around your eyes.

Let your healthcare team know if you have any problems with your eyes.

Coping with side effects

We have more information about side effects and tips on how to cope with them.

What else do I need to know?

Other medicines, foods and drink

Cancer drugs can interact with medicines, herbal products, and some food and drinks. We are unable to list all the possible interactions that may happen. An example is grapefruit or grapefruit juice which can increase the side effects of certain drugs.

Tell your healthcare team about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies. Also let them know about any other medical conditions or allergies you may have.

Loss of fertility

It is not known whether this treatment affects fertility in people. Talk to your doctor before starting treatment if you think you may want to have a baby in the future.

Contraception and pregnancy

This treatment might harm a baby developing in the womb. It is important not to become pregnant or get someone pregnant while you're having treatment and for a few months afterwards.

Talk to your doctor or nurse about effective contraception before starting treatment. Let them know straight away if you or your partner become pregnant while having treatment.

Breastfeeding

Don’t breastfeed during this treatment because the drug may come through into your breast milk.

Treatment for other conditions

If you are having tests or treatment for anything else, always mention your cancer treatment. For example, if you are visiting your dentist.

Immunisations

Don’t have immunisations with live vaccines while you’re having treatment and for up to 12 months afterwards. The length of time depends on the treatment you are having. Ask your doctor or pharmacist how long you should avoid live vaccinations.

In the UK, live vaccines include rubella, mumps, measles, BCG, yellow fever and one of the shingles vaccines called Zostavax.

You can have:

• other vaccines, but they might not give you as much protection as usual
• the flu vaccine (as an injection)
• the coronavirus (COVID-19) vaccine - talk to your doctor or pharmacist about the best time to have it in relation to your cancer treatment

Members of your household who are aged 5 years or over are also able to have the COVID-19 vaccine. This is to help lower your risk of getting COVID-19 while having cancer treatment and until your immune system recovers from treatment.

Contact with others who have had immunisations - You can be in contact with other people who have had live vaccines as injections. Avoid close contact with people who have recently had live vaccines taken by mouth (oral vaccines) such as the oral typhoid vaccine. Sometimes people who have had the live shingles vaccine can get a shingles type rash. If this happens they should keep the area covered.

If your immune system is severely weakened, you should avoid contact with children who have had the flu vaccine as a nasal spray as this is a live vaccine. This is for 2 weeks following their vaccination.

Babies have the live rotavirus vaccine. The virus is in the baby’s poo for about 2 weeks and could make you ill if your immunity is low. Get someone else to change their nappies during this time if you can. If this isn't possible, wash your hands well after changing their nappy.

More information about this treatment

For further information about this treatment and possible side effects go to the electronic Medicines Compendium (eMC) website. You can find the patient information leaflet on this website.

You can report any side effect you have to the Medicines Health and Regulatory Authority (MHRA) as part of their Yellow Card Scheme.