Side effects of actinomycin D (dactinomycin, Cosmegen)
Find out about the side effects of the chemotherapy drug actinomycin D for bone cancer.
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.
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.
Chemotherapy reduces 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 
.
Tell your doctor or nurse straight away if you have this.
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.
You might feel very tired during your treatment. It might take 6 months to a year for your energy levels to get back to normal after the treatment ends. A low red blood cell count will also make you feel tired.
You can do things to help yourself, including some gentle exercise. It’s important not to push yourself too hard. Try to eat a well balanced diet.
Talk to your doctor or nurse if you are finding the tiredness difficult to manage.
Feeling or being sick can be severe. It can start a few hours after treatment and last for a few days. Anti sickness injections and tablets can control it. Tell your doctor or nurse if you feel sick. You may need to try different anti sickness medicines to find one that works.
Tips
- Avoid eating or preparing food when you feel sick.
- Avoid fried foods, fatty foods or foods with a strong smell.
- Drink plenty of liquid to stop you from getting dehydrated.
- Relaxation techniques help control sickness for some people.
- Ginger can help – try it as crystallised stem ginger, ginger tea or ginger ale.
- Fizzy drinks help some people when they are feeling sick.
You might lose your appetite for various reasons when you are having cancer treatment. Sickness, taste changes or tiredness can all put you off food and drinks.
Tips
- Eating several small meals and snacks throughout the day can be easier to manage.
- Ask your doctor or nurse to recommend high calorie drinks to sip between treatments, if you are worried about losing weight.
- You can make up calories between treatments for the days when you really don’t feel like eating.
- Drink plenty of fluids even if you can't eat.
- Don't fill your stomach with a large amount of liquid before eating.
- Try to eat high calorie foods to keep your weight up.
You could lose all your hair. This includes your eyelashes, eyebrows, underarm, leg and sometimes pubic hair. It usually starts gradually within 2 to 3 weeks after treatment begins.
Your hair will grow back once your chemotherapy treatment has finished. This can take several months and your hair is likely to be softer. It can also grow back a different colour or be curlier than before.
Tips
- Ask about getting a wig before you start treatment so you can match the colour and texture of your real hair.
- You could choose a wig for a whole new look.
- Think about having your hair cut short before your treatment starts.
- Some people shave their hair off completely so they don't have to cope with their hair falling out.
- Wear a hairnet at night so you won't wake up with hair all over your pillow.
Your mouth might become sore about 5 to 10 days after you start treatment. It usually clears up gradually 3 to 4 weeks after your treatment ends.
Your doctor or nurse can give you mouthwashes to help prevent infection. You have to use these regularly to get the most protection.
Tell your doctor or nurse straight away if your mouth is really sore. They can help to reduce the discomfort. Some people need strong painkillers to help control mouth pain so they can eat and drink.
Tips
- Clean your mouth and teeth gently every morning and evening and after each meal.
- Use mouthwashes as advised by your doctor or nurse. Let them know if the mouthwash stings. They can tell you to stop using it or dilute it with water.
- Use dental floss daily but be gentle so that you don't harm your gums, and don't floss if you have very low platelets.
- Avoid neat spirits, tobacco, hot spices, garlic, onion, vinegar and salty food.
- Moisten meals with gravies and sauces to make swallowing easier.
- Avoid acidic fruits such as oranges, grapefruit or lemons.
This can happen in up to 1 in 3 people (33%).
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.
Diarrhoea can be severe and happens in up to 1 in 3 people (33%) who are taking actinomycin D.
You might have an acne like rash. You might notice darkening of your skinm particularly along the vein where you have your injection.
Actinomycin D can also cause reddening of areas of skin that have had radiotherapy.
Don’t use sunbeds or sit in the sun. Cover up or use a sun block if you go out in the sun. Remember to put sun cream on your head or wear a hat if you have lost any hair there.
Occasional side effects
Each of these effects happens in more than 1 in 100 people (1%). You might have one or more of them.
Tell your healthcare team straightaway if you get a high temperature. Ask them if you can take paracetamol to help lower your temperature.
You might have abdominal (tummy) cramps. Let your nurse know. There is medication that can help.
Tell your doctor or nurse if you’re feeling depressed. They can arrange for you to talk to someone and give treatment if necessary.
You might find it more difficult to swallow food. Let your doctor or nurse know if this happens.
Tell your nurse straight away if you have any pain, redness, swelling or leaking around your drip site.
You might have liver changes that are usually mild and unlikely to cause symptoms. They usually go back to normal when treatment finishes. You have regular blood tests to check for any changes in the way your liver is working.
Talk to your doctor before starting treatment if you think you may want to have a baby in the future.
Men
You may be able to store sperm before starting treatment.
It can take a few months or sometimes years for fertility to return to normal. You can have sperm counts to check your fertility when your treatment is over. Ask your doctor about it.
Women
Chemotherapy can cause an early menopause. This stops you from being able to become pregnant in the future. Talk to your doctor about this before your treatment. It’s sometimes possible to store eggs or embryos before treatment.
Rare side effects
Each of these effects happens in fewer than 1 in 100 people (1%). You might have one or more of them.
Women might stop having periods (amenorrhoea) but this may be temporary.
There is a small risk that you may get a second cancer some years after this treatment. Your doctor will discuss this with you.
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.
