Thiotepa

Thiotepa (TEPADINA^®) is used to treat some blood cancers and several other types of cancer. 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.

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.

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.

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.

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.

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. 

Thiotepa can increase your risk of sepsis. Sepsis (also called blood poisoning) is a serious and potentially life-threatening complication of an infection. We have further information about sepsis.

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.

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
• tiny red or purple spots on the skin that may look like a rash
• blood in the urine
• bleeding from the vagina.

You may need a drip to give you extra platelets. This is called a platelet transfusion.

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.

The nurses will give you anti-sickness drugs regularly. This will help prevent or control sickness during your treatment in hospital. If you feel sick or are sick (vomit), tell your nurse or doctor straight away. They can change the anti-sickness treatment. Or they might change the way you have it to something that works better for you.

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.

This treatment can raise your blood sugar levels and increase the risk of diabetes. 

Signs of raised blood sugar include:

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

Tell your doctor or nurse if you have these symptoms. They can do tests to check your blood sugar level and give you advice.

If you already have diabetes, your blood sugars may be higher than usual. You may need to check them more often, or make changes to your diabetic treatment. Your diabetic doctor or nurse will talk to you about how to manage this.

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.

Contact the hospital straight away on the 24-hour number, if:

• your mouth or throat is sore, or affecting how much fluid you can drink or food you can eat 
• your mouth, tongue, throat or lips have any blisters, ulcers or white patches. 

They can give you advice, and mouthwash or medicines to help with the pain or to treat any infection. Follow their advice and make sure you:

• drink plenty of fluids
• avoid alcohol and tobacco
• avoid food or drinks that irritate your mouth and throat.

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.

This treatment can cause inflammation in the gullet, stomach, or bowel.

You may get pain or discomfort in your tummy (abdomen), feel bloated or have indigestion.

Tell your doctor straight away if you have:

• severe tummy pain or a fever
• blood or mucus in your stools (poo)
• dark or tar-like stools

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

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.

Rarely, a much more serious skin condition can develop. You may have a skin rash which then blisters, and your skin can peel. You may also feel unwell with flu-like symptoms, such as a high temperature and joint pain. If you have any of these symptoms, contact your doctor or hospital immediately.

Your hair may get thinner. Or you may lose all the hair from your head. You may also lose your eyelashes and eyebrows, as well as other body hair. Hair loss usually starts after your first or second treatment.

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. Your scalp may be sensitive. It is important to cover your head to protect your skin when you are out in the sun.

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

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.

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 may get better after this treatment ends. But this does not always happen. If you notice any changes in your hearing, tell your doctor, nurse or pharmacist.

Thiotepa may cause high blood pressure. A nurse will check your blood pressure regularly during treatment. If you have headaches, nosebleeds or feel dizzy, let your doctor know. Your doctor can usually prescribe tablets to control high blood pressure.

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.

This treatment can affect the nervous system. Tell your doctor or nurse straight away if you notice any of these symptoms:

• numbness or tingling in your arms or legs
• problems with moving 
• loss of balance or co-ordination
• loss of memory or concentration
• feeling confused
• feeling anxious or restless.

You should not drive or operate machinery if you have these symptoms.

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

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.

This treatment may cause a build-up of fluid. You may gain weight, or your face, ankles and legs may swell. Tell your doctor or nurse if you notice any swelling in these areas. They may give you drugs to help reduce the swelling.

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.

Your doctor will advise you not to get pregnant or make someone pregnant while having this treatment. The drugs may harm a developing baby. You may need a pregnancy test before starting treatment. 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.

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.

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.

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: 

• medicines you have been prescribed
• medicines you buy in a shop, pharmacy or online
• vitamins or supplements 
• herbal drugs and complementary or homeopathic therapies
• recreational drugs – for example, cannabis.

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.

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.