Treosulfan (Trecondi)

Treosulfan is a type of chemotherapy. It is pronounced tree-oh-sul-fan. It is also called Trecondi.

You might have it as a treatment before a stem cell or bone marrow transplant.

How do you have treosulfan?

You have treosulfan as a drip into your bloodstream (intravenously).

You might have treatment through a long plastic tube that goes into a large vein in your chest. The tube stays in place throughout the course of treatment. This can be a:

• central line

• PICC line

• portacath

You might have treatment through a thin short tube (a cannula) that goes into a vein in your arm. You have a new cannula each time you have treatment.

Before treatment starts you may have a blood test to check for viruses such as hepatitis B, hepatitis C, and HIV. This is called a viral screen.

It’s important for your doctor to know if you have had any of these viruses. This is because this treatment can weaken your immune system and can cause the virus to become active again (reactivation).

What are the side effects of treosulfan?

Side effects can vary from person to person. They also depend on what other treatments you're having. 

When to contact your team

Your doctor, nurse or pharmacist will go through the possible side effects. They will monitor you during treatment and check how you are at your appointments. Contact your advice line as soon as possible if:

• you have severe side effects 

• your side effects aren’t getting any better

• your side effects are getting worse

Early treatment can help manage side effects better. 

We haven't listed all the side effects here. Talk to your healthcare team if you have any new symptoms that you think might be a side effect of your treatment.

Remember it is very unlikely that you will have all of these side effects. But you might have some of them at the same time.

Common side effects

These side effects happen in more than 10 in 100 people (more than 10%). You might have one or more of them. They include:

Increased risk of infection

Increased risk of getting an infection is due to a drop in white blood cells. Symptoms include a change in temperature, aching muscles, cough, headaches, feeling cold and shivery, pain or a burning feeling when peeing, or generally feeling unwell. You might have other symptoms depending on where the infection is.

Infections can sometimes be life threatening. You should contact your advice line urgently if you think you have an infection.

Breathlessness

You might be breathless and look pale due to a drop in red blood cells. This is called anaemia.

Bruising and bleeding

This is due to a drop in the number of platelets in your blood. These blood cells help the blood to clot when we cut ourselves. You may have nosebleeds or bleeding gums after brushing your teeth. Or you may have lots of tiny red spots or bruises on your arms or legs. This is known as petechiae.

Tiredness (fatigue)

Tiredness and weakness (fatigue) can happen during and after treatment. Doing gentle exercises each day can keep your energy up. Don't push yourself, rest when you start to feel tired and ask others for help.

Feeling or being sick

Feeling or being sick is usually well controlled with anti sickness medicines. It might help to avoid fatty or fried foods, eat small meals and snacks and take regular sips of water. Relaxation techniques might also help.

It is important to take anti sickness medicines as prescribed even if you don’t feel sick. It is easier to prevent sickness rather than treat it once it has started.

Diarrhoea

Contact your advice line if you have diarrhoea. For example, in one day you have 2 or more loose bowel movements than usual. If you have a stoma, you might have more output than normal. Your doctor may give you anti diarrhoea medicine to take home with you after treatment.

Try to eat small meals and snacks regularly. It’s best to try to have a healthy balanced diet if you can. You don’t necessarily need to stop eating foods that contain fibre. But if your diet is normally very high in fibre, it might help to cut back on high fibre foods such as beans, nuts, seeds, dried fruit, bran and raw vegetables.

Drink plenty to try and replace the fluid lost. Aim for 8 to 10 glasses per day.

Sore mouth and ulcers

Mouth sores and ulcers can be painful. Rarely you might also get a dry mouth or your mouth might bleed.

Keep your mouth and teeth clean; drink plenty of fluids; avoid acidic foods such as oranges, lemons and grapefruits; chew gum to keep the mouth moist and tell your doctor or nurse if you have ulcers.

Liver changes

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.

Rarely the small blood vessels which lead to the liver and that are inside get blocked. This can lead to yellowing of the whites of the eyes and skin, liver tenderness and enlargement, sudden weight gain or a build up of fluid in the tummy (abdomen).

Occasional side effects

These side effects happen in between 1 and 10 out of every 100 people (between 1 and 10%). You might have one or more of them. They include:

• an allergic reaction that can cause a rash, shortness of breath, redness or swelling of the face and dizziness - some allergic reactions can be life-threatening, alert your nurse or doctor if notice any of these symptoms

• sepsis - a serious reaction to an infection. Signs can include feeling very unwell, not passing urine, being sick, a very high or very low temperature or shivering - contact your advice line straight away if you have any of these symptoms

• lung problems which can cause difficulty in breathing and a cough. Rarely it can happen due to inflammation of the lung or a build up of fluid around the lung

• loss of appetite

• difficulty sleeping (insomnia)

• headaches

• dizziness – do not drive or use machinery if you are dizzy

• nosebleeds

• changes to heart rhythm – you might have regular heart trace tests (ECG) to check for this

• changes to your blood pressure and looking flushed

• indigestion

• constipation

• difficulty swallowing

• hair loss or hair thinning

• redness, soreness or peeling on palms or soles of feet (palmar plantar syndrome)

• pain in different parts of the body such as back pain, pain in joints or bones or pain in your hands and feet. Rarely you might also have muscle pain

• kidney problems, such as blood in your pee – you might have blood and urine tests to check for this. Rarely you might have pain when you pee

• fluid build up in different parts of the body such as hands and legs

• your blood tests might show you have inflammation in the body

• inflammation and irritation to the lining of the stomach (gastritis)– you might have symptoms such as bloating or feeling full after eating, feeling or being sick, indigestion, and stomach pain

• skin problems such as small raised bumps which may be red or purple. Your skin might be itchy. Rarely you might a rash which develops suddenly, the bumps may be filled with pus or have a crust that develops over them

• high temperature and chills

• weight changes

• tummy pain, or rarely a swollen tummy

Rare side effects

These side effects happen in fewer than 1 in 100 people (less than 1%). You might have one or more of them. They include:

• changes to your blood sugar levels – you will have regular blood tests to check for this

• bleeding in your brain

• feeling confused

• numbness or tingling in your fingers or toes

• hiccups

• chest pain

• inflammation of the throat and voice box, you might also have pain in your voice box

• dry skin

• dry mouth

• the feeling of the room spinning or moving around you (vertigo)

Other side effects

There isn't enough information to work out how often this side effect might happen. But treosulfan can cause a second cancer to develop some years after treatment.

What else do I need to know?

Other medicines, foods and drink

Cancer drugs can interact with medicines, herbal products, and some food and drinks. We are unable to list all the possible interactions that may happen. An example is grapefruit or grapefruit juice which can increase the side effects of certain drugs.

Tell your healthcare team about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies. Also let them know about any other medical conditions or allergies you may have.

Pregnancy and contraception

This treatment may harm a baby developing in the womb. It is important not to become pregnant or get someone pregnant while you're having treatment and for at least 6 months afterwards.

Talk to your doctor or nurse about effective contraception before starting treatment. Let them know straight away if you or your partner become pregnant while having treatment. 

Loss of fertility

You may not be able to become pregnant or get someone pregnant after treatment with this drug. Talk to your doctor before starting treatment if you think you may want to have a baby in the future.

Men might be able to store sperm before starting treatment. And women might be able to store eggs or ovarian tissue. But these services are not available in every hospital, so you would need to ask your doctor about this.    

Breastfeeding

It is not known whether this drug comes through into the breast milk. Doctors usually advise that you don’t breastfeed during this treatment.

Treatment for other conditions

If you are having tests or treatment for anything else, always mention your cancer treatment. For example, if you are visiting your dentist.

Immunisations

Don’t have immunisations with live vaccines while you’re having treatment and for up to 12 months afterwards. The length of time depends on the treatment you are having.

Ask your doctor or pharmacist how long you should avoid live vaccinations.

In the UK, live vaccines include rubella, mumps, measles, BCG, and yellow fever.

You can usually have:

• other vaccines, but they might not give you as much protection as usual

• the flu vaccine (as an injection)

• the coronavirus (COVID-19) vaccine

Talk to your doctor or pharmacist about the best time to have a vaccine in relation to your cancer treatment.

Contact with others who have had immunisations 

You can be in contact with other people who have had live vaccines as injections. If someone has had a live vaccine by mouth or nasal spray there may be a small risk the vaccine virus can be passed onto you if your ​immune system​ is weakened.

Your healthcare team will let you know if you need to take any precautions if you are in close contact with someone who has had a live vaccine.

Read more about immunisations and cancer treatment