What is thiotepa?

Thiotepa (TEPADINA®) is a chemotherapy drug used to treat leukaemia, lymphoma and myeloma. It may sometimes be used to treat other cancers. It is given before a stem cell transplant or bone marrow transplant.

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.

How is thiotepa given?

You will be given thiotepa during a stay in hospital. A chemotherapy nurse will give it to you. Thiotepa can be given in combination with other cancer drugs.

During treatment, you usually see a cancer doctor or haematologist (a doctor who treats blood cancers), and a chemotherapy nurse or a specialist nurse. This is who we mean when we mention doctor or nurse in this information.

Your nurse usually gives you anti-sickness (anti-emetic) drugs before the chemotherapy.

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).

Your nurse will give you thiotepa as a drip (infusion) into your line. The drip is usually given through a pump, which gives the treatment over two to four hours.

Your course of chemotherapy

Thiotepa is usually given in combination with other chemotherapy drugs. It is given over several days before you have a stem cell or bone marrow transplant. The length of your treatment will depend on the type of cancer you have.

Your nurse or doctor will discuss your treatment plan with you.

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 at any time of the day or night. Save these numbers in your phone or keep them somewhere safe.

Sometimes side effects can become serious very quickly. It is important to contact the hospital straight away if you have new symptoms or side effects.

More information

We cannot list every side effect for this treatment. There are some rarer side effects that are not listed. You can visit the European Medicines Agency to download more information including patient information for this drug. The leaflet lists all known side effects.

Side effects while treatment is being given

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
  • 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, it can be treated quickly.

Sometimes a reaction happens a few hours after treatment. If you develop any signs or feel unwell after you get home, contact the hospital straight away.

Pain along the vein

Thiotepa can cause pain at the place where the injection is given or along the vein. If you feel pain, tell your nurse or doctor straight away so that they can check the site. They may give the drug more slowly or flush it through with more fluid to reduce pain.

Common side effects of thiotepa

Risk of infection

This treatment will 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 are having a stem cell or bone marrow transplant, you will probably be looked after in a single room for a few weeks. This is to reduce your risk of infection. Your nurse will give you drugs to help prevent or to treat an infection, if you have one. They will take your temperature regularly and check you for signs of an infection.

The number of white blood cells should gradually increase after the stem cell or bone marrow transplant. You will have regular blood tests to check this.

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
  • blood in the urine
  • bleeding from the vagina.

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. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may have symptoms such as:

  • pale skin
  • lack of energy
  • feeling breathless
  • feeling dizzy and light-headed.

Tell your doctor or nurse if you have these symptoms.

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

The nurses will give you anti-sickness drugs regularly to help prevent or control sickness during your treatment. If you feel sick or are sick (vomit), tell your nurse or doctor. They 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.

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 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 use machinery.

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 a mouth or throat infection. 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.

Sucking ice chips may sometimes help relieve mouth or throat pain. But if you are having radiotherapy to the head or neck, do not suck on ice. It can cause damage.

Diarrhoea

If you have diarrhoea, ask your doctor or nurse for advice. Try to drink at least 2 litres (3½ pints) of fluids every day. It can help to avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods.

Tummy pain

Thiotepa can cause pain in your tummy (abdomen) or indigestion. Rarely, thiotepa may cause a stomach ulcer. Tell your doctor if you have:

  • tummy pain
  • blood from the back passage when you empty your bowels
  • dark or tar-like poo (stools).

This treatment may also cause inflammation of the bowel (colitis). Tell your doctor straight away if you:

  • have severe pain in your tummy
  • are vomiting
  • have blood or mucus in your poo
  • have a fever.

Skin changes

This treatment 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. This treatment can cause a rash, which may be itchy.

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

Hair loss

Your hair will get thinner or you may lose all the hair from your head. You may also lose your eyelashes, eyebrows or other body hair.

Your nurse can talk to you about ways to cope with hair loss. There are ways to cover up hair loss if you want to. It is important to cover your head to protect your scalp when you are out in the sun.

Hair loss is almost always temporary. Your hair will usually grow back after treatment ends.

Eye problems

This treatment may make your eyes feel sore, red and itchy (conjunctivitis). Your doctor will prescribe eye drops to help prevent this. It is important to use these as instructed.

Thiotepa may also cause blurry vision. Always tell your doctor or nurse if you have pain or notice any change in your vision. You should not drive or operate machinery if you have blurred vision.

Hearing changes

This treatment may cause hearing changes, including hearing loss. You may have ringing in the ears. This is called tinnitus. You may also become unable to hear some high-pitched sounds. Hearing changes usually get better after this treatment ends. But some can be permanent. Tell your doctor if you notice any changes in your hearing.

Effects on the liver

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

Back, joint or muscle pain

You may get pain in your back, muscles or joints for a few days after chemotherapy. 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 you have headaches, tell your doctor. They may give you painkillers to help.

Effects on the lungs

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

  • a cough
  • 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 heart

This treatment can affect how the heart works. You may have tests to see 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 your doctor straight away on the 24-hour number the hospital has given you if you have any of these symptoms during or after treatment:
  • pain or tightness in your chest
  • breathlessness
  • dizziness
  • changes to your heartbeat.

Other conditions can cause these symptoms, but it is important to get them checked by a doctor. If you cannot get through to your doctor, call the NHS urgent advice number on 111.

Raised blood sugar levels

This treatment may raise your blood sugar levels. You will have regular blood tests to check this. Symptoms of raised blood sugar include:

  • feeling thirsty
  • needing to pass urine (pee) more often
  • feeling tired.

Tell your doctor or nurse if you have these symptoms during treatment or after it finishes.

If you have diabetes, your blood sugar levels may be higher than usual. Your doctor will talk to you about how to manage this.

Effects on nervous system

Thiotepa can affect the nervous system. You may feel:

  • anxious
  • restless
  • drowsy
  • dizzy
  • confused

Tell your doctor or nurse straight away if you notice any of these symptoms. You should not drive or operate machinery if you feel dizzy or drowsy.

Fits (seizures)

Thiotepa can cause fits. Tell your doctor straightaway if you have a fit.

High blood pressure

This treatment may cause high blood pressure. Tell your doctor or nurse if you have ever had any problems with your blood pressure. Let them know if you feel dizzy or have any headaches.

Inflammation of the gullet (oesophagus)

Thiotepa can cause inflammation of the gullet. This can cause:

  • sickness
  • taste changes
  • bloating
  • heart burn

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

Build-up of fluid (oedema)

Sometimes fluid can build up in your legs and ankles. This can cause swelling. This is known as oedema. Tell your doctor or nurse if you have any swelling. If your ankles and legs swell, it can help to put your legs up on a foot stool or cushion. The swelling usually gets better after your treatment ends.

Weight gain

You may gain weight while having this treatment. Eating a healthy diet and exercising regularly can help control your weight. Tell your doctor or nurse if you are finding it difficult to control your weight.

Memory and concentration

You may notice changes in your memory. You may also find it harder to concentrate. To help you remember things, try using:

  • a notebook
  • notes on your phone
  • a calendar.

Less common side effects of thiotepa

Constipation

This treatment can cause constipation. Constipation means that you are not able to pass stools (poo) as often as you normally do. It can become difficult or painful. 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.

Bladder inflammation

Thiotepa may irritate your bladder and cause discomfort when you pass urine (pee). You may pass less urine than normal.

Drink at least 2 litres (3½ pints) of fluids per day. Tell your nurse or doctor if you feel any discomfort or stinging when you pass urine, or if you notice any blood in it.

Second cancer

This treatment can increase the risk of developing a second cancer years later. This is rare. But the benefits of treatment usually far outweigh this risk. Your doctor can talk to you about this.

Other information about thiotepa

Blood clot risk

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

  • throbbing pain, redness or swelling in a leg or arm
  • suddenly feeling breathless or coughing
  • sharp chest pain, which may be worse when you cough or take a deep breath.

If you have any of these symptoms, contact the hospital straight away on the 24-hour contact number you have been given. If you cannot get through to your doctor, call the NHS urgent advice number on 111.

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

You can help reduce the risk of developing a blood clot by:
  • staying active during treatment
  • drinking plenty of fluids, especially water.

You may be given anticoagulants to help prevent a clot.

Other medicines

Some medicines can affect chemotherapy or be harmful when you are having it. Thiotepa can affect the way the anti-epilepsy drug phenytoin works. It may also interact with other drugs. Medicines you can buy in a shop or chemist may also be harmful when having chemotherapy. Tell your cancer doctor about any medicines you are taking, including vitamins, herbal drugs and complementary therapies.

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

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

Your doctor or nurse 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

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 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.

Vaccinations

Vaccinations can reduce your risk of getting certain infections. Your doctor or nurse may talk to you about having vaccinations.

Doctors usually recommend that people with cancer have a flu vaccination and a coronavirus vaccination. These are both inactivated vaccinations that can help reduce the risk of infection. People with weak immune systems can have these, as they are not live vaccinations.

If your immune system is weak, you need to avoid live vaccinations. This is because they can make you unwell. Live vaccines, such as shingles, contain a very weak version of the illness they are vaccinating you against. Your cancer doctor or GP can tell you more about live and inactivated vaccinations.