What is trabectedin (Yondelis®)?

Trabectedin (Yondelis®) is used to treat soft tissue sarcoma and sometimes ovarian cancer. 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 this treatment.

How trabectedin is given

You will be given trabectedin in the chemotherapy day unit or during a stay in hospital. A chemotherapy nurse will give it to you. Trabectedin 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 steroids as an injection before the chemotherapy. This is to stop you feeling sick. You may also be given other drugs to stop you feeling sick.

The chemotherapy drugs can be given through:

  • 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)
  • a short thin tube the nurse puts into a vein in your arm or hand (cannula).

 

Your course of chemotherapy

You usually have a course of several cycles of treatment over a few months. Your nurse or doctor will discuss your treatment plan with you.

 

Soft tissue sarcoma

Your nurse will give you trabectedin as a drip (infusion). Or the drug can be put into a small, portable pump. It will take about 24 hours.

If you have this treatment as a drip, you have to stay in hospital overnight. This is often done for the first treatment so the nurse can monitor your side effects.

If you have a pump, the nurse attaches this to your central line and you can go home while the drug is being infused. You come back to the hospital the next day to have it disconnected. Or sometimes a district nurse can do this in your home. Your chemotherapy nurse will explain how to look after the pump and what to do if there is a problem with it.

You have the treatment every three weeks.

 

Ovarian cancer

Your nurse will give you trabectedin as a drip (infusion). They usually run the drip through a pump, which gives you the treatment over a set time. The first time you have it over three hours. After this, they may give it to you over one hour.

Trabectedin is usually given in combination with liposomal doxorubicin. You have the treatment every three weeks. 

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 have not 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 the drug leaks outside the vein, it can damage the surrounding tissue. This is called extravasation. Extravasation is not common but if it happens it is important to treat it 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 on the contact telephone number they gave you.

Common side effects

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 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.

Difficulty sleeping (insomnia)

Some people have difficulty sleeping while they are on trabectedin. This could be because of the chemotherapy, or because of the steroid you have with it. Speak to your doctor if you are having difficulty sleeping.

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.

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.

Constipation

This treatment can cause constipation. Here are some tips that may help:

  • Drink at least 2 litres (3½ pints) of fluids each day.
  • Eat high-fibre foods, such as fruit, vegetables and wholemeal bread.
  • Do regular gentle exercise, like going for short walks.

If you have constipation, contact the hospital for advice. Your doctor can give you drugs called laxatives to help.

Diarrhoea

This treatment may cause diarrhoea. Diarrhoea means passing more stools (poo) than is usual for you, or having watery or loose stools. If you have a stoma, it will be more active than usual.

If you have diarrhoea:

  • try to drink at least 2 litres (31/2 pints) of fluids each day
  • avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods
  • contact the hospital for advice.

Muscle or joint pain

You may get pain in your muscles or joints for a few days after treatment. If this happens, tell your doctor so they can give you painkillers. Tell them if the pain does not get better. Having warm baths and taking regular rests may help.

Headaches

This treatment may cause headaches. If this happens, tell your doctor or nurse. They can give you painkillers.

Effects on the kidneys and liver

This treatment can affect how your kidneys and liver work. This is usually mild and goes back to normal after treatment.

You will have blood tests to check how well your kidneys and liver are working. It is important to drink at least 2 litres (3½ pints) of fluids each day to help protect your kidneys.

The steroid you take with trabectedin helps to protect your liver. If you notice the whites of your eyes or your skin look yellow, tell your doctor or nurse straight away. Your doctor will advise you not to drink alcohol during your course of trabectedin. This is because it can damage the liver.

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.

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. Trabectedin can cause a rash, which may be itchy. Your skin may darken. It will return to its normal colour after you finish treatment. 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. 

Numb or tingling hands or feet (peripheral neuropathy)

This treatment affects the nerves, which can cause numb, tingling or painful hands or feet. You may find it hard to fasten buttons or do other fiddly tasks.

Tell your doctor if you have these symptoms. They sometimes need to lower the dose of the drug. The symptoms usually improve slowly after treatment finishes, but for some people they may never go away. Talk to your doctor if you are worried about this.

Less common side effects

Hair loss

Your hair may get thinner but you are unlikely to lose all the hair from your head. Hair loss usually starts after your first or second treatment. It is almost always temporary and your hair will usually grow back after treatment ends. Your nurse can talk to you about ways to cope with hair loss.

Effects on the lungs

This treatment can cause changes to the lungs. Tell your doctor if you develop:

  • a cough
  • wheezing
  • a fever (high temperature)
  • breathlessness.

You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.

Effects on the heart

Chemotherapy can affect the way the heart works. You may have tests to see how well your heart is working. These may be done before, during and sometimes after treatment. If the treatment is causing heart problems, your doctor can change the type of chemotherapy you are having.

Contact a doctor straight away if you:

  • have pain or tightness in your chest
  • feel breathless or dizzy
  • feel your heart is beating too fast or too slowly.

Other conditions can cause these symptoms, but it is important to get them checked by a doctor.

Other information

Blood clot risk

Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:

  • pain, redness or swelling in a leg or arm
  • breathlessness
  • chest pain.

If you have any of these symptoms, contact a doctor straight away.

A blood clot is serious, but can be treated with drugs that thin the blood. Your doctor or nurse can give you more information.

Other medicines

Some medicines can affect how this treatment works or be harmful when you are having it. Always tell your cancer doctor about any drugs you are taking or planning to take, such as:

  • medicines you have been prescribed
  • medicines you buy in a shop or chemist
  • vitamins, herbal drugs and complementary therapies.

Tell other doctors, pharmacists or dentists who prescribe or give you medicines that you are having this cancer treatment.

You can visit the electronic Medicines Compendium (eMC) for more detailed information about your treatment.

Contraception

Your doctor will advise you not to get pregnant or make someone pregnant while having this treatment. The drugs may harm a developing baby. It is important to use contraception during your treatment and for a while after treatment finishes. Your doctor, nurse or pharmacist can tell you more about this.

Breastfeeding

Women are advised not to breastfeed while having this treatment. This is because the drugs could be passed to the baby through breast milk.

Fertility

Some cancer drugs can affect whether you can get pregnant or make someone pregnant. If you are worried about this, it is important to talk with your doctor before you start treatment.

Sex

If you have sex in the first few days after chemotherapy, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluids.

Medical and dental treatment

If you need medical treatment for any reason other than cancer, always tell the doctors and nurses that you are having cancer treatment. Give them the contact details for your cancer doctor so they can ask for advice.

If you think you need dental treatment, talk to your cancer doctor or nurse. Always tell your dentist you are having cancer treatment.

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