What is treosulfan?

Treosulfan is also called Trecondi®. It is used to treat ovarian cancer. It may sometimes be used to treat other cancers.

Treosulfan may also be given before a donor stem cell (allogeneic) transplant as part of conditioning treatment. 

This information is not about treosulfan when used as conditioning treatment. This information is about treosulfan being given to treat 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 treatment.

More information about this treatment

This information is correct at time of publishing. But sometimes the types of cancer this treatment is used for, or treatment side effects, may change between revision dates.

You can talk to your cancer team if you want more detailed information about this treatment. Or visit the electronic Medicines Compendium (eMC) website, which has patient information leaflets (PIL) for individual drugs.

How treosulfan is given

Treosulfan can be given into your vein (intravenously) or by mouth as capsules.

Having treosulfan into a vein

If you are having treosulfan into your vein, you have it in the chemotherapy day unit or during a stay in hospital. A chemotherapy nurse gives it to you.

Treosulfan can be given in combination with other cancer drugs. 

During treatment, you usually see a:

  • cancer doctor 
  • chemotherapy nurse or specialist nurse 
  • specialist pharmacist. 

This is who we mean when we mention doctor, nurse or pharmacist in this information.

Before or on the first day of treatment, a nurse or person trained to take blood (phlebotomist) takes a blood sample from you. This is to check that your blood cells are at a safe level to have chemotherapy. 

You see a doctor or nurse before you have chemotherapy. They talk to you about your blood results and ask you how you have been feeling. If your blood results are okay, the pharmacist prepares 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. 

If you are having treosulfan into your vein as a drip (infusion), it may be given through: 

  • a cannula – a short, thin tube that goes into a vein in your arm or hand
  • a central line – a fine tube that goes under the skin of your chest and into a vein close by
  • a PICC line – a fine tube that goes into a vein in your arm and goes up into a vein in your chest
  • an implantable port (portacath) – a disc that goes under the skin on your chest or arm and goes into a vein in your chest.

Taking treosulfan capsules

If you are having treosulfan capsules, the nurse or pharmacist gives them to you to take home. They explain exactly how to take the capsules. They may also give you anti-sickness drugs and other medicines. 

It is important to swallow the treosulfan capsules whole with a glass of water. If they are chewed or dissolve in your mouth, they can cause a sore mouth.

If you forget to take a capsule, do not take a double dose. Take your next dose as normal and let your doctor or nurse know. 

Other things to remember about your capsules:

  • Wash your hands after taking your capsules.
  • Other people should avoid direct contact with them. 
  • Keep them in the original package at room temperature away from heat and direct sunlight.
  • Keep them safe and out of the sight and reach of children. 
  • If you are sick just after taking the capsules, contact the hospital. Do not take another dose.
  • If your treatment has stopped, return any unused capsules or tablets to the hospital pharmacist.

Your course of chemotherapy

If you are having treosulfan into the vein to treat your cancer, you usually have it every 3 or 4 weeks (a cycle). You usually have a course of several cycles over a few months. Your nurse or doctor will explain your treatment plan.

If you are having treosulfan by mouth, your doctor, nurse or pharmacist tells you how and when to take your capsules. You usually take capsules for a number of days or weeks, and then have a break before taking them again (a cycle). Take them exactly as they have been explained. This is important to make sure they work as well as possible for you. You usually keep taking the capsules for as long as they are working for you and any side effects can be managed.

About side effects

About side effects

We explain the most common side effects of this treatment here. We also include some that are less common. 

You may get some of the side effects we mention, but you are unlikely to get all of them. And you may have some side effects, including rarer ones, that we have not listed here. 

Other cancer treatments may cause different side effects. If you are also having other cancer treatment, you may have other side effects.

Always tell your doctor, nurse or pharmacist about any side effects you have. They can give you: 

  • drugs to help control some side effects 
  • advice about managing side effects. 

It is important to take any drugs exactly as explained. This means they will be more likely to work for you.

Serious and life-threatening side effects

Some cancer treatments can cause serious side effects. Sometimes, these may be life-threatening. Your doctor, nurse or pharmacist can explain the risk of these side effects to you.

Contact the hospital

Your doctor, nurse or pharmacist will give you 24-hour contact numbers for the hospital. If you feel unwell or need advice, you can call at any time of the day or night. Save these numbers in your phone or keep them somewhere safe.

Side effects while treatment is being given into a vein

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 
  • shivering
  • itching
  • a skin rash
  • feeling dizzy or sick
  • a headache
  • feeling breathless or wheezy
  • 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, they can treat it quickly. 

Sometimes a reaction happens a few hours after treatment. If you develop any of these signs or feel unwell after you get home, contact the hospital straight away on the 24-hour number.

The drug leaks outside the vein

The drug may leak 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. 

Common side effects

Risk of infection

This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If your white blood cell count is low, you may be more likely to get an infection. A low white blood cell count is called neutropenia.

An infection can be very serious when the number of white blood cells is low. It is important to get any infection treated as soon as possible. If you have any of the following symptoms, contact the hospital straight away on the 24-hour number:

  • a temperature above 37.5°C  
  • a temperature below 36°C 
  • you feel unwell, even with a normal temperature
  • you have symptoms of an infection.

Symptoms of an infection include:

  • feeling shivery and shaking
  • a sore throat
  • a cough 
  • breathlessness
  • diarrhoea
  • needing to pass urine (pee) often, or discomfort when you pass urine.

It is important to follow any specific advice your cancer treatment team gives you.

Your white blood cell count 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, until your cell count increases.

Bruising and bleeding

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

If the number of platelets is low, you may bruise or bleed easily. You may have:

  • nosebleeds
  • bleeding gums
  • heavy periods
  • blood in your urine (pee) or stools (poo)
  • tiny red, brown or purple spots that may look like a rash – these spots can be harder to see if you have black or brown skin. 

If you have any unexplained bruising or bleeding, contact the hospital straight away on the 24-hour number. You may need a drip to give you 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. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may feel:

  • very low in energy
  • breathless 
  • dizzy and light-headed. 

If you have these symptoms, contact the hospital straight away on the 24-hour number. You may need treatment for anaemia. 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

Your doctor, nurse or pharmacist will prescribe anti-sickness drugs to help prevent or control sickness. Take the drugs exactly as they tell you to, even if you do not feel sick. It is easier to prevent sickness than to treat it after it has started.

If you feel sick, take small sips of fluid often and eat small amounts regularly. It is important to drink enough fluids. If you continue to feel sick, or if you are sick (vomit) 1 to 2 times in 24 hours, contact the hospital on the 24-hour number as soon as possible. They will give you advice. They may change your anti-sickness treatment. Let them know if you still feel sick.

Sore mouth and throat

This treatment may cause a sore mouth and throat. You may also get mouth ulcers. This can make you more likely to get an infection in your mouth or throat. Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.

If your mouth or throat 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 and throat.

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.

Feeling tired

Feeling tired is a common side effect of this treatment. It is often worse towards the end of treatment and for some weeks after it ends. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can help you feel less tired. 

If you feel sleepy, do not drive or use machinery.

Difficulty sleeping (insomnia)

You may have difficulty sleeping (insomnia) during your course of treosulfan. Speak to your doctor if you have difficulty sleeping.

Skin changes

This treatment may affect your skin. It may cause a rash, which might be itchy. You may notice changes in skin colour. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day.

During treatment and for several months afterwards, your skin will be more sensitive to the sun and you may burn more easily than usual. Use a suncream with a sun protection factor (SPF) of at least 30 if you go out in the sun. You should also cover up with clothing and a hat.

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

Bladder irritation

Treosulfan may irritate your bladder and cause discomfort when you pass urine (pee). Make sure you drink plenty of fluids in the 24 hours after chemotherapy. Try to drink at least 2 litres (3½ pints) of fluids.

It is also important to empty your bladder regularly and try to pass urine as soon as you feel the need to go.

Loss of appetite

This treatment can affect your appetite. Don’t worry if you do not eat much for 1 or 2 days. But if your appetite does not come back after a few days, or if you are losing weight, tell your doctor, nurse or pharmacist. They can give you advice. They may give you food or drink supplements. Or they may suggest changes to your diet or eating habits to help.

Diarrhoea

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

If you are passing loose stools 3 or more times a day and this is not normal for you, contact the hospital as soon as possible on the 24-hour number. Follow the advice they give you about:

  • taking anti-diarrhoea medicines 
  • drinking enough fluids to keep you hydrated and to replace lost salts and minerals
  • any changes to your diet that might help. 

They might also ask you for a specimen of your stool to check for infection.

Less common side effects

Effects on the lungs

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

  • a cough that does not go away
  • wheezing
  • breathlessness.

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

Effects on the liver

This treatment may affect how your liver works. This is usually mild. You will have blood tests to check how well your liver is working.

Effects on the heart

This treatment can affect how the heart works. You may have tests to check how well your heart is working. These may be done before, during and after treatment.

If the treatment is causing heart problems, your doctor may change the type of treatment you are having.

Contact the hospital straight away on the 24-hour number if you have any of these symptoms during or after treatment:

  • breathlessness
  • dizziness
  • changes to your heartbeat
  • swollen feet and ankles.

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

Always call 999 if you have:

  • chest pain, pressure, heaviness, tightness or squeezing across the chest
  • difficulty breathing.

Flu-like symptoms

Rarely, this treatment may cause flu-like symptoms such as having a headache or aching muscles or joints. Tell your doctor or nurse if you feel like this.

Second cancer

This treatment can increase the risk of developing a second cancer years later. But this is rare.

You can talk to your doctor or nurse about this. They can explain how the benefits of your treatment will outweigh the risk.

Other information

Blood clot risk

Cancer and some cancer treatments can increase the risk of a blood clot. Contact the hospital straight away on the 24-hour number if you have any of these symptoms during or after treatment:

  • throbbing pain or swelling in a leg or arm
  • reddening of the skin in the area – if you have black or brown skin, this can be harder to notice, but the skin might become darker
  • suddenly feeling breathless or coughing.

Always call 999 if you have:

  • chest pain
  • difficulty breathing.

A blood clot is serious, but it can be treated with drugs called anticoagulants. These thin the blood. Your doctor, nurse or pharmacist can give you more information about preventing and treating blood clots.

Other medicines

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

Vaccinations

Doctors usually recommend that people with cancer have vaccinations for flu and for coronavirus (covid). These help reduce your risk of serious illness from these infections. Most people can have these vaccines, including people with weak immune systems.

If your immune system is weak, you should not have live vaccinations. Live vaccines can make you unwell because they contain a very weak version of the illness they will protect you against. Live vaccines include Zostavax®, which is a shingles vaccine, and the yellow fever vaccine.

It is important to ask your doctor, nurse or pharmacist for advice about having vaccinations. They can explain what vaccines are right for you and when it is best to have them.

Contraception

Your doctor, nurse or pharmacist will advise you not to get pregnant or make someone pregnant while having this treatment and for some time afterwards. The drugs may harm a developing baby. It is important to use contraception to prevent pregnancy. Follow their advice about:

  • what types of contraception to use 
  • how long after treatment you should continue to use contraception. 

Breastfeeding

You are advised not to breastfeed while having this treatment, or for some time after treatment ends. This is because the drugs could be passed to the baby through breast milk. 

Your doctor, nurse or pharmacist can give you more information.

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

It is possible that small amounts of chemotherapy may be passed on through vaginal fluids or semen. If you have sex during this treatment, your cancer team will usually advise using condoms or a dental dam to protect your partner.

Medical and dental treatment

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

If you have appointments with a dentist, always tell them you are having cancer treatment. Talk to your cancer team before you have any dental treatment.

About our information

References

Reviewers

  • Reviewers

    This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert health professionals and people living with cancer.

    Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.

The language we use

We want everyone affected by cancer to feel our information is written for them.

We want our information to be as clear as possible. To do this, we try to:

  • use plain English
  • explain medical words
  • use short sentences
  • use illustrations to explain text
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We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected.

You can read more about how we produce our information here.

Date reviewed

Reviewed: 01 July 2022
|
Next review: 01 January 2025
Trusted Information Creator - Patient Information Forum
Trusted Information Creator - Patient Information Forum

Our cancer information meets the PIF TICK quality mark.

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