Thiotepa

Thiotepa is a type of chemotherapy. You pronounce it as thy-oh-tee-puh.

Thiotepa is a treatment for a number of different cancer types.

You usually have it as part of your treatment before a stem cell transplant. You have it with other chemotherapy drugs.

If you’re having thiotepa as part of a combination treatment called MATRix for central nervous system (CNS) lymphoma, go to our page about this.

How does thiotepa work?

Thiotepa is a type of drug called an alkylating agent . It works by damaging a cell’s DNA . This stops the cell from dividing into two new cells , and so the cell dies.

How do you have thiotepa?

You have thiotepa 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

How often do you have thiotepa?

The treatment plan for thiotepa depends on which type of cancer you have. 

You have it once or twice a day for up to 5 days. You usually have thiotepa over 2 to 4 hours.

Your healthcare team will let you know how often you will have thiotepa.  

Tests

You have blood tests before and during your treatment. They check your levels of blood cells and other substances in the blood. They also check how well your liver and kidneys are working.

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 thiotepa?

Side effects can vary from person to person. They also depend on what other treatment you are having. 

When to contact your team

Your doctor, pharmacist or nurse will go through the possible side effects. They will monitor you closely 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

• the side effects are affecting your daily life

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.

The side effects below are for adults. The side effects for children having this drug as part of a stem cell transplant are generally similar. But how common the side effects are (the frequency) may be different.

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 getting an 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. 

A serious reaction to an infection (sepsis)

Breathlessness and looking pale

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

Bruising, bleeding gums or nosebleeds

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.

You may have bleeding from other areas of your body including the brain. But this is less common. Tell your healthcare team if you have any abnormal bleeding.

Graft versus host disease

Graft versus host disease is a side effect from having a stem cell transplant. It is when the transplanted cells (the graft) attack your body (the host). This can cause diarrhoea, skin rashes and liver damage.  

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.

Mouth sores and ulcers

Mouth sores and ulcers can be painful. It helps to keep your mouth and teeth clean, drink plenty of fluids and avoid acidic foods such as lemons. Chewing gum can help to keep your mouth moist. Tell your doctor or nurse if you have ulcers.

Indigestion

You might have some discomfort or gas after eating or drinking. You may get a burning feeling in your chest (heartburn).

Inflammation of the bowel and food pipe (oesophagus) 

Inflammation of the food pipe can cause symptoms such as feeling sick, heartburn, cough, pain when you eat or feel like something is stuck in your throat.

Inflammation of the bowel can cause bloating, pain, runny poo (diarrhoea), or blood or mucus in your poo.

Tell your healthcare team if you have any of these symptoms.

Less commonly you might develop a hole in your stomach or bowel wall (perforation), or the slowing or stopping of the bowel (ileus).

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.

Inflammation of the bladder (cystitis)

You might feel that you have to pee more often than usual or find it difficult to pee. And you may have a burning feeling when you do. Or you might feel that you can't wait when you need to go. You might also see blood in your pee (urine). This is called haemorrhagic cystitis. 

Tell your doctor or nurse if you have any of these symptoms.

Loss of appetite

You might lose your appetite for various reasons while having cancer treatment. Sickness, taste changes or tiredness can put you off food and drinks.

High blood sugar levels

You have regular blood and urine tests to check this. If you have diabetes you may need to check your blood sugar levels more often than usual. 

Confusion or changes to how well your brain works

You or the people around you may notice that you feel confused or not acting in a way that is normal for you.

You may have anxiety, a poor attention span or memory loss. Tell your doctor or nurse if you have any changes in the way, you think or feel.

Dizziness

This drug might make you feel dizzy. Don’t drive or operate machinery if you have this.

Headaches 

Tell your healthcare team if you keep getting headaches. They can give you painkillers to help.

Eye problems

You might have eye problems including blurred vision, sore, red, itchy, dry eyes (conjunctivitis) or an infection. Tell your healthcare team if you have this. They can give you eye drops or other medicines to help. 

Less commonly you may develop cataracts. A cataract is clouding of the lens of the eye which leads to slow loss of vision. Your doctor can refer you to an eye specialist if this happens. You can have surgery to replace the clouded lens.

Fits (seizures)

Tell your doctor if you have any fits, twitching or jerking of your limbs. 

Numbness and tingling

Numbness or tingling in fingers or toes is often temporary and can improve after you finish treatment. Tell your healthcare team if you're finding it difficult to walk or complete fiddly tasks such as doing up buttons. 

Hearing changes

You might have some hearing loss, especially with high pitched sounds. You might also have some ringing in your ears (tinnitus). Tell your doctor or nurse if you notice any changes.

Changes to the heart

You may have changes to the way your heart works. Your heart beat may be irregular.

Less commonly you may have a fast heart beat or develop heart failure. Rare side effects include inflammation or thickening of the heart muscle.

You will have regular heart checks during and after treatment.

Fluid build up

You may notice swelling in parts of your body, including your arms or legs. This is due to a build up of fluid. This can happen for different reasons.

You may develop lymphoedema. This is caused by problems with the lymphatic system, which means the lymph fluid doesn’t drain properly.

Contact your healthcare team if you have any swelling.

High blood pressure

Tell your doctor or nurse if you have headaches, nosebleeds, blurred or double vision or shortness of breath. You have your blood pressure checked regularly.

Lung problems

You might develop a cough or breathing problems. This could be due to infection, such as pneumonia or inflammation of the lungs (pneumonitis). 

A less common side effect is fluid on the lung. This also can cause breathlessness. 

Liver problems

Your liver might become bigger than normal (enlarged). Or a vein to the liver might get blocked. Tell your doctor or contact the advice line if you have any pain or discomfort on the right side where your liver is. 

You might have yellowing of the eyes and skin. This is called jaundice. It is caused by high levels of bile pigments in the blood. Let your doctor or nurse know straight away if you have this.

You have regular blood tests to check for any changes in how your liver is working.

Skin problems

Skin problems include a skin rash, dry skin and itching. Less commonly you may have redness of the skin.

This usually goes back to normal when your treatment finishes. Your healthcare team can tell you what products you can use on your skin to help.

Rarely you may notice changes in the colour of your skin – this may be in patches.

You may develop a rash that covers most of your body and looks like a burn. Your skin may also peel. Or you may develop a tender rash that quickly spreads and blisters. You may have flu-like symptoms and your eyes may hurt. Although rare, these are serious skin reactions and you must let your healthcare team know straightaway.

Hair loss

You could lose all your hair. This includes your eyelashes, eyebrows, underarms, legs and sometimes pubic hair. Your hair will usually grow back once treatment has finished but it is likely to be softer. It may grow back a different colour or be curlier than before. 

Pain

You might feel pain in different areas of your body including your muscles, back, joints, or tummy (abdomen). Speak to your doctor or nurse about what painkillers you can take to help with this. 

Tiredness and weakness (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.

Weight gain

You may gain weight while having this treatment. You may be able to control it with diet and exercise. Tell your healthcare team if you are finding it difficult to control your weight. 

Inflammation around the drip site

Tell your nurse straight away if you have any pain, redness, swelling or leaking around your drip site.

Changes to periods and vaginal bleeding

Your periods might stop during treatment. Or you may have some bleeding from your vagina. It is important to contact your healthcare team if this is heavy bleeding. 

Changes in blood test results

There may be changes in levels of substances in the blood, such as amylase. This is an enzyme which is mainly made by the pancreas. You have regular blood tests throughout treatment.

Occasional side effects

Each of these effects happens in more than 1 in 100 people (1%). You might have one or more of them. They include:

• blood clots that can be life threatening; signs are pain, redness and swelling where the clot is. Feeling breathless can be a sign of a blood clot in the lung. Contact your advice line or doctor straight away if you have any of these symptoms

• multi organ failure – this is life threatening and may be a complication of severe infection. Signs include feeling sick, passing less urine, swelling in arms and legs, chest pain, anxiety and confusion

• 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

• a weakness in a blood vessel in the brain (aneurysm). Tell your doctor straightaway if you have a sudden severe headache, stiff neck, sickness or sensitivity looking at light

• problems with the pituitary gland making hormones

• movements that you can’t control or tremors

• changes to how well the kidneys work – you have regular blood tests to check this

• constipation

• passing urine less often than usual – tell your doctor or nurse if you notice this

• an increased risk of getting another type of cancer in the future – your doctor will talk to you about this

Rare side effects

Each of these effects happens in fewer than 1 in 100 people (1%). You might have one or more of them. They include:

• hallucinations

• nervousness and agitation

• low oxygen levels

• stomach ulcer

Coping with side effects

We have more information about side effects and tips on how to cope with them.

What else do I need to know

Other medicines, food 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 might harm a baby developing in the womb. It is important not to become pregnant or get someone pregnant while you're having treatment with this drug and for at least a year 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.

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.

Immunisation

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.

More information about this treatment

For further information about this treatment and possible side effects go to the electronic Medicines Compendium (eMC) website. You can find the patient information leaflet on this website.

You can report any side effect you have to the Medicines Health and Regulatory Authority (MHRA) as part of their Yellow Card Scheme.

This page is due for review. We will update this as soon as possible.