Thiotepa (Tepadina)

Thiotepa is a chemotherapy drug. It is mainly used to prepare people for a bone marrow transplant . 

How does thiotepa work?

Thiotepa is a type of drug called an alkylating agent. It works by sticking to 1 of the cancer cell's DNA strands. Then the cell can't divide into 2 new cells. 

DNA is the genetic code that is in the heart of all animal and plant cells. It controls everything the cell does. 

How do you have thiotepa?

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

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

When do you have thiotepa?

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

You have it every 12 hours or 24 hours. You might have up to 5 days of treatment. 

Your healthcare team will let you know how often and how many days you will be having 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.

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. 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.

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, headaches, feeling cold and shivery and generally 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 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 (known as petechiae).

Tiredness and weakness (fatigue) during and after treatment

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.

Headaches 

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

Dizziness

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

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 medication to help. 

Fits (seizures)

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

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.

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. 

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.

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.

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. 

Skin problems

Skin problems include a skin rash, dry skin and itching. 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.

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 some pain in your muscles, back, joints, tummy (abdomen) or pain generally. Speak to your doctor or nurse about what painkillers you can take to help with this. 

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 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.

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.

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.

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. 

Fluid build up

A build up of fluid may cause swelling in your arms, hands, ankles, legs, face and other parts of the body. Contact your healthcare team if this happens to you.

Inflammation around the drip site

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

Inflammation of the bladder (cystitis)

You might feel that you have to pass urine more often than usual or find it difficult to pass urine. 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 urine. This is called cystitis. 

It helps to drink plenty of fluids. Some people think that cranberry juice can help but others feel it makes the soreness worse.

You might find that some drinks increase the soreness, such as tea and coffee. You can experiment for yourself and see what works for you.

Don't take any over the counter medicines for cystitis as they could be harmful.

Tell your doctor or nurse if you have soreness. They can prescribe medicines to help.

Difficulty remembering things

You might have some difficulty remembering while having this treatment. Talk to your doctor or nurse if this happens.

Changes to some hormone levels 

Some people make less amounts of particular hormones. This may make you feel tired and less able to react to things as you would usually. You may also have a low sex drive or put on weight. You have regular blood tests to check your hormone levels. 

Confusion

You or the people around you may notice that you feel confused. Tell your doctor or nurse if this happens.

Changes to the heart

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

Less common side effects can be a very fast heart beat and heart attack. A rare side effect can be inflammation of the heart muscle. 

Changes to periods and vaginal bleeding

Your periods might stop or you might have bleeding from the vagina.

Graft versus host disease

This is when the transplanted cells (the graft) attack your body (the host). This can cause diarrhoea, skin rashes and liver damage.  

Indigestion

You might have some discomfort or gas after eating or drinking.

Swollen or enlarged lymph nodes

You might develop swollen lymph nodes. These could be in your neck, groin, armpits or tummy. Speak to your doctor if you notice any unusual swollen lumps in your body. 

Changes in blood test results

There may be changes in levels of substances in the blood, such as calcium, potassium and phosphate. You will have regular blood tests to check the levels.

Inflammation of the bowel and food pipe (oesophagus) 

Inflammation of the bowel can cause abdominal pain, bloating or diarrhoea. Speak to your doctor if you have these symptoms.

Inflammation of the food pipe  can cause a number of symptoms including feeling sick, taste changes, chest pain, bloating, burping and heart burn. Tell your doctor or nurse if you suddenly have any of these.

Delay of growing in children

For children having thiotepa their height and weight might be delayed.

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 a severe life threatening condition caused by trauma or severe infection. Signs include feeling sick, passing less urine, swelling in arms and legs, chest pain, anxiety and confusion. Contact your doctor straight away if you have any

• 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

• anxiety

• changes to the way the kidneys work

• stomach ulcer

• bleeding in the brain (stroke)

• bowel blockage signs include pain, cramping, feeling full, throwing up

• constipation

• muscle weakness and loss of coordination

• pain passing urine

• passing urine less often than usual

• an increased risk of getting another type of cancer in the future

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:

• a severe skin reaction that may start as tender red patches which leads to peeling or blistering of the skin. You might also feel feverish and your eyes may be more sensitive to light. This is serious and could be life threatening

• hallucinations

• nervousness and agitation

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 some other medicines and herbal products. Tell your doctor or pharmacist about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies.

Pregnancy

This treatment might harm a baby developing in the womb. It is important not to become pregnant or father a child while you're having treatment.

Talk to your doctor or nurse about effective contraception you can use during treatment. Ask how long you should use it before starting treatment and after treatment has finished.

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

Cancer drugs can interact with some other medicines and herbal products. Tell your doctor or pharmacist about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies.

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, yellow fever and one of the shingles vaccines called Zostavax.

You can 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 it in relation to your cancer treatment

Members of your household who are aged 5 years or over are also able to have the COVID-19 vaccine. This is to help lower your risk of getting COVID-19 while having cancer treatment and until your immune system recovers from treatment.

Contact with others who have had immunisations - You can be in contact with other people who have had live vaccines as injections. Avoid close contact with people who have recently had live vaccines taken by mouth (oral vaccines) such as the oral typhoid vaccine. Sometimes people who have had the live shingles vaccine can get a shingles type rash. If this happens they should keep the area covered.

If your immune system is severely weakened, you should avoid contact with children who have had the flu vaccine as a nasal spray as this is a live vaccine. This is for 2 weeks following their vaccination.

Babies have the live rotavirus vaccine. The virus is in the baby’s poo for about 2 weeks and could make you ill if your immunity is low. Get someone else to change their nappies during this time if you can. If this isn't possible, wash your hands well after changing their nappy.

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.