What is tucatinib (Tukysa®)?

Tucatinib (Tukysa®) is used to treat advanced HER2-positive breast cancer. It is given to people who have already had 2 or more treatments for HER2-positive breast cancer. It is best to read this information with our general information about the type of cancer you have.

HER2-positive breast cancer cells have too much of a protein called HER2 on their surface. HER2 encourages the cells to grow.

Tucatinib belongs to a group of targeted therapy drugs known as tyrosine kinase inhibitors (TKIs). It blocks the HER2 protein on the cancer cells, which stops the cells from dividing and growing.

Your doctor will talk to you about this treatment and its possible side effects before you agree (consent) to have treatment.

More information about this 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.

How tucatinib is given

Tucatinib comes as tablets you can take at home. You take tucatinib twice a day, with or without food. You should wait 12 hours between each dose. Try to take your tablets at the same times each day.

If you are taking capecitabine tablets, you can take your tucatinib at the same time.

Always take your tucatinib tablets exactly as explained. This is important to make sure they work as well as possible for you. Make sure you:

  • swallow the tablets whole with a glass of water
  • do not chew, open or crush the tablets.

If you forget to take the tablets, you should take your next dose at your regular time. If a full day has passed, let your doctor or nurse know. Do not take a double dose.

Other things to remember about your tablets:

  • Keep them in the original package and at room temperature, away from heat and direct sunlight.
  • Keep them safe and out of sight and reach of children.
  • If you are sick just after taking the tucatinib tablets, do not take another dose. Contact your healthcare team for advice.
  • If your treatment is stopped, return any unused tablets to the pharmacist.

Your nurse or pharmacist may also give you other medicines to take home. Take all your medicines exactly as they have been explained to you. Do not stop taking any of your medicines unless your doctor tells you to.

Your course of treatment

How long you have trastuzumab depends on your situation. Your doctor, nurse or pharmacist will talk to you about your treatment plan.

If the cancer is advanced, trastuzumab might be given for as long as it is controlling the cancer.

About side effects

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.

Serious and life-threatening side effects

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.

Contact the hospital

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.

Common side effects of tucatinib

Diarrhoea

This treatment may cause severe diarrhoea. Diarrhoea means passing more stools (poo) than is normal for you, or having watery or loose stools. If you have a stoma, it will be more active than usual. 

Your doctor, nurse or pharmacist may give you anti-diarrhoea drugs to take at home. 

If you have diarrhoea or a mild increase in stoma activity, follow their advice about: 

  • taking anti-diarrhoea drugs 
  • how much and what type of fluids to drink 
  • any changes to your diet that might help. 

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

  • you have diarrhoea at night 
  • you have uncomfortable stomach cramps
  • you have diarrhoea 4 or more times in a day 
  • you have a moderate increase in stoma activity 
  • the anti-diarrhoea drugs do not work within 24 hours.

You may need to give a stool sample, or go to hospital to have fluids through a drip or antibiotics.

Effects on the liver

This treatment may affect how your liver works. You will have blood tests before your treatment and every 3 weeks during treatment to check how well your liver is working.

Sometimes liver changes can be serious. Contact the hospital straight away if you have any of these symptoms during treatment or after it finishes:

  • yellow skin or eyes
  • feeling very sleepy
  • dark urine (pee)
  • unexplained bleeding or bruising
  • itching
  • pain in the upper right side of your tummy
  • loss of appetite or feeling sick.

Feeling sick

Your doctor, nurse or pharmacist will prescribe anti-sickness drugs to help prevent or control sickness. Take the drugs exactly as they tell you to, even if you do not feel sick. It is easier to prevent sickness than to treat it after it has started.

If you feel sick, take small sips of fluid often and eat small amounts regularly. It is important to drink enough fluids. If you continue to feel sick, or if you are sick (vomit) 1 to 2 times in 24 hours, contact the hospital on the 24-hour number as soon as possible. They will give you advice. They may change your anti-sickness treatment. Let them know if you still feel sick.

Skin changes

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

Always tell your doctor or nurse about any skin changes. They can give you advice and may prescribe creams or medicines to help. Changes to your skin usually improve when treatment ends.

Hand-foot (palmar-plantar) syndrome

This treatment can affect the palms of your hands and the soles of your feet. This is called palmar-plantar or hand-foot syndrome. 

If you have white skin these areas may become red. If you have black or brown skin, these areas might get darker. 

The skin on the palms of your hands and the soles of your feet may:

  • be sore
  • be painful, tingle, or swell
  • peel, crack or blister. 

If you have any of these symptoms, contact the hospital straight away on the 24-hour number. They can give you advice. This is especially important if you have any broken skin or if walking is difficult. They can prescribe creams and painkillers to help.

You can care for your hands and feet by: 

  • keeping your hands and feet cool by washing in cool water
  • gently moisturising your hands and feet regularly
  • wearing gloves to protect your hands and nails when working in the house or garden
  • wearing loose cotton socks and avoiding tight-fitting shoes and gloves.

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.

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.

Muscle or joint pain

You may get pain in your muscles or joints. If this happens, tell your doctor or nurse. They can give you advice and painkillers or other drugs to help. Being physically active and keeping to a healthy weight may help with the pain. It can keep your joints flexible and reduce stress on them. If the pain does not get better, tell your doctor or nurse. They may talk to you about changing to a different hormonal drug.

Nosebleeds

You may experience bleeding from your nose. Talk to your doctor or nurse about the best way to manage this if it happens. If a nosebleed does not stop, call the NHS urgent advice number on 111.

Less common side effects

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 or sick
  • 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, they can treat it quickly. 

Sometimes a reaction happens a few hours after treatment. If you develop any of these signs or feel unwell after you get home, contact the hospital straight away on the 24-hour number.

Other information

Blood clot risk

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.

Other medicines

Some medicines can affect how this treatment works or be harmful when you are having it.

Always tell your cancer doctor about any drugs you are taking or planning to take, such as:

  • medicines you have been prescribed
  • medicines you buy in a shop or chemist
  • vitamins, herbal drugs and complementary therapies.

Tell other doctors, pharmacists or dentists who prescribe or give you medicines that you are having this cancer treatment.

You can visit the electronic Medicines Compendium (eMC) for more detailed information about your treatment.

St. John’s wort

You should not take any herbal drugs containing St. John’s wort while having tucatinib. It can make the treatment work less well.

Vaccinations

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.

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 at least a week 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 at least a week 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.

Medical and dental treatment

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.

About our information

  • Reviewers

    This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert health professionals and people living with cancer.

    Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.

The language we use

We want everyone affected by cancer to feel our information is written for them.

We want our information to be as clear as possible. To do this, we try to:

  • use plain English
  • explain medical words
  • use short sentences
  • use illustrations to explain text
  • structure the information clearly
  • make sure important points are clear.

We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected.

You can read more about how we produce our information here.

Date reviewed

Reviewed: 01 May 2022
|
Next review: 01 November 2024
Trusted Information Creator - Patient Information Forum
Trusted Information Creator - Patient Information Forum

Our cancer information meets the PIF TICK quality mark.

This means it is easy to use, up-to-date and based on the latest evidence. Learn more about how we produce our information.