Trabectedin (Yondelis ®)
Trabectedin is a chemotherapy drug used to treat advanced soft tissue sarcoma. It may also be given in some situations to treat ovarian cancer. In this information we focus on its use in soft tissue sarcoma.
This information should ideally be read with our general information about chemotherapy and your type of cancer.
The National Institute for Health and Care Excellence (NICE) gives advice on which new drugs or treatments should be available on the NHS in England and Wales. NICE has approved trabectedin to treat advanced soft tissue sarcoma. The Scottish Medicines Consortium (SMC) is an organisation similar to NICE for the NHS in Scotland. The SMC has not approved trabectedin to treat soft tissue sarcoma. In Northern Ireland, you can find out if trabectedin is available on the NHS from your hospital team.
How trabectedin is given
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You will usually have trabectedin in the chemotherapy unit. A chemotherapy nurse will give it to you. During treatment you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse. This is who we mean when we mention doctor or nurse 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 it is okay for you to have chemotherapy.
You will also see a doctor or nurse before you have chemotherapy. They will ask you about how you have been. If your blood results are alright on the day of your treatment, the pharmacist will prepare your chemotherapy. Your nurse will tell you when your treatment is likely to be ready.
Your nurse will give you a steroid as an injection into a vein, 30 minutes before you have trabecetedin. This is to stop you feeling sick and to help stop an allergic reaction. They will give you the drugs and chemotherapy through a fine tube that goes under the skin of your chest and into a vein close by (central line).
Your course of trabectedin
The trabectedin infusion will take about 24 hours. The drug can be put into a small portable pump. This is attached to your central line and you can go home while the drug is being infused. The district nurse can remove it the next day. The infusion is repeated every three weeks and is known as a cycle of treatment. Sometimes, you may have to stay in hospital overnight.
When the chemotherapy is being given - allergic reaction
Some people might have an allergic reaction while they are having the chemotherapy. Your nurse checks you for signs of this and if you have a reaction they will treat it quickly. Let them know if you get a rash, feel itchy, feverish, breathless, dizzy, have a headache or any other symptoms.
Before you go home, the nurse or pharmacist will give you anti-sickness drugs and other medicines to take home. Take all your tablets exactly as they have explained to you.
Possible side effects of trabectedin
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We explain the most common side effects of trabectedin here. But we don’t include all the rare ones that are unlikely to affect you.
You may get some of the side effects we mention but you are very unlikely to get all of them. If you are having other chemotherapy drugs as well, you may have some side effects that we don’t list here. Always tell your doctor or nurse about the side effects you have.
Your doctor can prescribe drugs to help control some side effects. It is very important to take them exactly as your nurse or pharmacist has explained. This means they will be more likely to work better for you. Your nurse will give you advice about managing your side effects. After your treatment is over, the side effects will start to improve.
Contact the hospital
Your nurse will give you telephone numbers for the hospital. You can call them if you feel unwell or need advice any time of day or night. Save these numbers in your phone or keep them somewhere safe.
Risk of infection
Trabectedin can reduce the number of white blood cells in your blood. This will make you more likely to get an infection. When the number of white blood cells is low, it’s called neutropenia.
Contact the hospital straight away on the contact number you’ve been given if:
your temperature goes over 37.5°C (99.5°F) or over 38°C (100.4°F), depending on the advice given by your chemotherapy team
you suddenly feel unwell, even with a normal temperature
you have symptoms of an infection – this can include feeling shaky, a sore throat, a cough, diarrhoea or needing to pass urine a lot.
The number of white blood cells usually increases steadily and returns to normal before your next treatment. You will have a blood test before having more chemotherapy. If your white blood cells are still low, your doctor may delay your treatment for a short time.
Bruising and bleeding
Trabectedin 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 you can’t explain. This includes nosebleeds, bleeding gums, blood spots or rashes on the skin. Some people may need a drip to give them extra platelets.
Anaemia (low number of red blood cells)
Trabectedin 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 (blood transfusion).
This may happen in the first few days after chemotherapy. Your doctor will prescribe anti-sickness (anti-emetic) drugs to help prevent or control sickness. They may also give you a steroid drug to help. Take the drugs exactly as your nurse or pharmacist explained to you. It’s easier to prevent sickness than to treat it after it has started.
If you still feel sick, or vomit twice or more in 24 hours, contact the hospital on the numbers they gave you as soon as possible. They will give you advice and may change the anti-sickness drug to one that works better for you. Some people may need to go to hospital for a short time so the doctors and nurses can control their sickness.
Feeling very tired is a common side effect. It’s often worse towards the end of treatment and for some weeks after it’s over. Try to pace yourself and get as much rest as you need. It helps to balance this with some gentle exercise, such as short walks. If you feel sleepy, don’t drive or operate machinery.
Trabectedin may make you constipated and cause tummy pain. Drinking at least two litres of fluids (three and a half pints) every day will help. Try to eat more foods that contain fibre (such as fruit, vegetables and wholemeal bread) and take regular gentle exercise.
If you haven’t had a bowel motion for two days, contact the hospital for advice. Your doctor can prescribe laxatives to help you. Always contact the hospital straightaway if you are constipated and have tummy pain or are being sick.
Loss of appetite
You may lose your appetite during your treatment. Try to eat small meals regularly. Don’t worry if you don’t eat much for a day or two. If your appetite doesn’t improve after a few days, let your nurse or dietitian know. They can give you advice on getting more calories and protein in your diet. They may give you food supplements or meal replacement drinks to try. Your doctor can prescribe some of these and you can buy them from chemists.
Your doctor can prescribe drugs to control diarrhoea. Let them know if it is severe or if it doesn’t get better. Make sure you drink at least two litres (three and a half pints) of fluids every day if you have diarrhoea.
Your mouth may become sore and you may get ulcers. This can make you more likely to get an infection in your mouth. Gently clean your teeth and/or dentures morning and night and after meals. Use a soft-bristled or children’s toothbrush. Your nurse might ask you to rinse your mouth regularly or use mouthwashes. It’s important to follow any advice you are given and to drink plenty of fluids.
Tell your nurse or doctor if you have any problems with your mouth. They can prescribe medicines to prevent or treat mouth infections and reduce any soreness.
Tell your nurse or doctor if you are getting headaches. They can prescribe some mild painkillers to help relieve them.
Trabectedin may cause changes in the way your liver works, although it will return to normal when the treatment finishes. You're very unlikely to notice any problems, but your doctor will take regular blood samples to check your liver is working properly. If you notice the whites of your eyes or your skin looks a yellow colour, let your doctor or nurse know straight away.
Trabectedin can affect how your kidneys work. This is usually mild and goes back to normal after treatment. You will have blood tests to check how well your kidneys are working. Your nurse will ask you to drink plenty of fluid.
Soreness and redness of palms of hands and soles of feet
This is called palmar-plantar or hand-foot syndrome. It gets better when treatment ends. Your doctor or nurse may prescribe creams to improve the symptoms. It can help to keep your hands and feet cool and to avoid tight-fitting socks, shoes and gloves.
Less common side effects of trabectedin
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Your hair may thin but you’re unlikely to lose all the hair from your head. This usually starts after your first or second cycle of chemotherapy. It is almost always temporary and your hair will grow back after chemotherapy ends. Your nurse can give you advice about coping with hair loss.
Trabectedin can cause changes to the lungs. Always tell your doctor if you develop wheezing, a cough, a fever or feel breathless. You should also let them know if any existing breathing problems get worse. If necessary, they can arrange for you to have tests to check your lungs.
Muscle pain and weakness
You may get pain in your joints or muscles for a few days after chemotherapy. Tell your doctor if this happens so they can prescribe painkillers. Let them know if the pain does not get better. Try to get plenty of rest. Taking regular warm baths may help.
It is important to tell your doctor or nurse straight away if you feel ill or have severe side effects. This includes any we don’t mention here.
Other information about trabectedin
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Blood clot risk
Cancer increases the chances 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.
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. Trabectedin may affect the way medicines such as phenytoin (an anti-seizure drug) work. Tell your doctor about any medicines you are taking, including over-the-counter drugs, complementary therapies and herbal drugs.
You should avoid alcoholic drinks while you are having trabectedin.
Trabectedin 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.
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 contraception during and for a few months after chemotherapy. You can talk to your doctor or nurse about this.
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.
Women are advised not to breastfeed during treatment and for a few months afterwards. 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 for 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.
This section has been compiled using a number of reliable sources, including:
electronic Medicines Compendium (eMC). medicines.org.uk (accessed September 2013).
British National Formulary. 65th edition. 2013. British Medical Association and Royal Pharmaceutical Society of Great Britain.
Micromedex® 2.0. 2013. Truven Health Analytics Inc. Available at: micromedexsolutions.com (accessed September 2013)
With thanks to: Bruce Burnett, Teacher Practitioner in Clinical Pharmacy Practice who reviewed this edition.
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