Dactinomycin (Cosmegen Lyovac®)

Dactinomycin (Cosmegen Lyovac®) is a chemotherapy drug used to treat cancers that affect children, but is sometimes used to treat adults.

It is best to read this information with our general information about chemotherapy and the type of cancer you have.

Dactinomycin is given into a vein. You usually have it as an outpatient or during a hospital stay. Your cancer doctor, nurse or pharmacist will tell you how often you will have it.

Like all chemotherapy drugs, dactinomycin can cause side effects. Some of the side effects can be serious, so it is important to read the detailed information below.

Your healthcare team can give you advice on how to manage any side effects. Tell your doctor or nurse straight away if you:

  • have a temperature
  • feel unwell
  • have severe side effects, including any we do not mention here.

Rarely, side effects may be life-threatening. Your cancer doctor, nurse or pharmacist can explain the risk of these side effects to you.

If you need medical attention for any reason other than cancer, always tell the healthcare staff that you are having this treatment.

What is dactinomycin?

Dactinomycin (Cosmegen Lyovac®) is a chemotherapy drug. It is used to treat cancers that affect children, such as Wilms' tumours or rhabdomyosarcoma. It is sometimes used to treat adults.

It is best to read this information with our general information about chemotherapy and the type of cancer you have.

Your doctor will talk to you about this treatment and its possible side effects before you agree (consent) to have treatment.


How dactinomycin is given

You will be given dactinomycin in the chemotherapy day unit or during a stay in hospital. A chemotherapy nurse will give it to you. Dactinomycin can be given in combination with other cancer drugs.

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 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. The chemotherapy drugs can be given through:

  • a short thin tube the nurse puts into a vein in your arm or hand (cannula)
  • a fine tube that goes under the skin of your chest and into a vein close by (central line)
  • a fine tube that is put into a vein in your arm and goes up into a vein in your chest (PICC line).

Your course of chemotherapy

You usually have a course of several cycles of treatment over a few months. The length of treatment and number of cycles you will have, depends on the type of cancer. Your nurse or doctor will discuss your treatment plan with you.


About side effects

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 haven’t 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.

More information

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.


Side effects while treatment is being given

Some people may have side effects while they are being given the chemotherapy, or shortly after they have it:

Allergic reaction

Some people have an allergic reaction while having this treatment. Signs of a reaction can include:

  • feeling hot or flushed 
  • a skin rash
  • itching
  • shivering
  • feeling dizzy
  • a headache
  • feeling breathless 
  • 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 can happen a few hours after treatment. If you get any signs or feel unwell after you get home, contact the hospital straight away.

The drug leaks outside the vein

If this happens, it can damage the tissue around the vein. This is called extravasation. Extravasation is not common, but if it happens it is important that it is dealt with quickly. Tell your nurse straight away if you have any stinging, pain, redness or swelling around the vein.

If you get any of these symptoms after you get home, contact the doctor or nurse straight away. You should use the number they gave you.


Common side effects of dactinomycin

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 called neutropenia.

If you have an infection, it is important to treat it as soon as possible. 

Contact the hospital straight away on the 24-hour contact number you have 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.

Symptoms of an infection include:

  • feeling shivery
  • a sore throat
  • a cough
  • diarrhoea
  • needing to pass urine often.

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.

Bruising and bleeding

This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. 

Tell your doctor if you have any bruising or bleeding that you cannot explain. 

This includes:

  • nosebleeds
  • bleeding gums
  • tiny red or purple spots on the skin that may look like a rash.

Some people may need a drip to give them 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. These cells carry oxygen around the body.

If the number of red blood cells is low, you may be tired and breathless. Tell your doctor or nurse if you feel like this.

If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

Feeling sick

You may feel sick in the first few days after this treatment. Your doctor will give you anti-sickness drugs to help prevent or control sickness. 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 and eat small amounts often. 

If you continue to feel sick, or if you vomit more than once in 24 hours, contact the hospital as soon as possible. They will give you advice and 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.

Diarrhoea

If you have diarrhoea, contact the hospital for advice. Try to drink at least 2 litres (3½ pints) of fluids every day. It can help to avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods.

Sore mouth

You may get a sore mouth or mouth ulcers. This can make you more likely to get a mouth infection. 

Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.

If your mouth 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.

Hair loss

Your hair will get thinner or you may lose all the hair from your head. You may also lose your eyelashes, eyebrows or other body hair. Hair loss usually starts after your first or second treatment.

Your nurse can talk to you about ways to cope with hair loss. There are ways to cover up hair loss if you want to. It is important to cover your head to protect your scalp when you are out in the sun.

Hair loss is almost always temporary and your hair will usually grow back after treatment ends.

Skin changes

Chemotherapy may affect your skin. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day. Dactinomycin can cause a rash, which may be itchy. If you have had radiotherapy recently or in the past, the area that was treated may become red or sore.

Always tell your doctor or nurse about any skin changes. They can give you advice and may prescribe creams or medicines to help. Any changes to your skin are usually temporary and improve when treatment finishes.

Feeling tired

Feeling tired is a common side effect. 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 operate machinery.


Less common side effects of dactinomycin

Changes to your taste

You may get a bitter or metal taste in your mouth. Sucking sugar-free sweets may help with this. Some foods may taste different or have no taste. Try different foods to find out what tastes best to you. Taste changes usually get better after treatment finishes. Your nurse can give you more advice.

Changes to the liver

Dactinomycin may affect how your liver works. This is usually mild and goes back to normal after treatment. You will have blood tests to check how well your liver is working.

Difficulty swallowing

Chemotherapy can affect the cells in the lining of the throat, which can make it painful to chew or swallow.

Tell your doctor or dietitian know if this happens to you.

Second cancer

Dactinomycin can increase the risk of developing a second cancer years later. This is rare. But the benefits of treatment usually far outweigh this risk. Your doctor can talk to you about this.


Other information about dactinomycin

Blood clot risk

Cancer increases the chance of a blood clot (thrombosis) and chemotherapy can add to this.

A clot can cause symptoms such as pain, redness and swelling in a leg, breathlessness and chest pain. Contact your doctor straight away if you have any of these symptoms. A blood clot is serious but your doctor can treat it with drugs that thin the blood. Your doctor or nurse can give you more information.

Other medicines

Some medicines can interact with chemotherapy or be harmful when you are having chemotherapy. This includes medicines you can buy in a shop or chemist. Tell your doctor about any medicines you are taking, including over-the-counter drugs, complementary therapies and herbal drugs.

Fertility

Dactinomycin can affect your fertility (being able to get pregnant or father a child). If you are worried about this, you can talk to your doctor before treatment starts.

Contraception

Your doctor will advise you not to become pregnant or father a child during treatment. This is because the drugs may harm a developing baby. It’s important to use effective contraception during and for a few months after chemotherapy. You can talk to your doctor or nurse about this.

Sex

If you have sex within the first couple of days of having chemotherapy, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluid.

Changes to your periods

Chemotherapy can sometimes stop the ovaries working. You may not get a period every month and they may eventually stop. In some women this is temporary, but for others it is permanent and they start the menopause.

Breastfeeding

Women are advised not to breastfeed during treatment and for a few months after. This is in case there is chemotherapy in their breast milk.

Medical and dental treatment

If you need to go into hospital for any reason other than cancer, always tell the doctors and nurses that you are having chemotherapy. Give them contact details of your cancer doctor.

Talk to your cancer doctor or nurse if you think you need dental treatment. Always tell your dentist you are having chemotherapy.