Neratinib (Nerlynx®)
What is neratinib (Nerlynx®)?
Neratinib is used to treat breast cancer.
Neratinib is also called Nerlynx®. It is a type of drug called a tyrosine kinase inhibitor (TKI). It belongs to a group of targeted therapy drugs called cancer growth inhibitors.
It is used if tests show that the cancer is hormone receptor positive and the cancer cells have too much of a protein called HER2. If the cancer cells have too much HER2 it is called HER2 positive cancer.
It is best to read this information with our general information about targeted therapy drugs and our information on breast cancer.
Your cancer team 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 neratinib is given
You take neratinib as tablets at home.
During a course of treatment, you will meet someone from your cancer team, such as a:
- cancer doctor
- specialist nurse
- specialist pharmacist.
This is who we mean when we mention doctor, nurse or pharmacist in this information.
During your course of treatment, you will have regular blood tests. This is to check that it is safe for you to have treatment.
You will meet regularly with a doctor, nurse or pharmacist. They will talk to you about your blood results and ask how you have been feeling.
Your course of treatment
Your cancer team will discuss your treatment plan with you.
They will give you the tablets to take home. Always take them exactly as they tell you to. This is important to make sure they work as well as possible for you.
You usually take neratinib every day for 1 year, as long as it is working for you and side effects can be managed.
Your cancer team will also give you anti-diarrhoea drugs and may give you anti-sickness drugs and other medicines to take home. Take all your capsules or tablets exactly as they tell you to.
Taking neratinib tablets
Make sure you:
- take them in the morning with food
- take them at the same time every day
- swallow them whole with a glass of water
- do not chew, break or crush them
- do not eat grapefruit or pomegranate, or drink grapefruit or pomegranate juice, or use supplements that might contain them during your treatment. This can increase the chance of side effects
- talk to your cancer team before you take any medicines to reduce stomach acid. These drugs may interfere with the way neratinib works. Your cancer team will advise you which medicines you can take and how to take them safely.
If you forget to take the tablets, take your next dose at the usual time. Do not take a double dose. Contact the hospital on the 24-hour number you have been given for advice.
Other things to remember about your tablets:
- Keep them in the original package and at room temperature, away from moisture, heat and direct sunlight.
- Keep them safe, where children cannot see or reach them.
- If you are sick (vomit) just after taking them, do not take an extra dose. Take your next dose at the usual time.
- Do not throw away unused tablets. Return them to your cancer team at the hospital.
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.
Very common side effects
These side effects happen to 10 or more people in every 100 people (10% or more) who have this treatment.
Diarrhoea
This treatment can cause diarrhoea. Sometimes this can be severe. 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 will give you anti-diarrhoea drugs to take at home for at least the first 1 to 2 months of treatment.
If you have diarrhoea or an increase in stoma activity:
- follow the advice from your hospital team about taking anti-diarrhoea drugs
- drink at least 2 litres (31/2 pints) of fluids each day
- avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods.
Contact the hospital straight away 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 or severe increase in stoma activity
- the anti-diarrhoea drugs do not work within 24 hours
- you feel dizzy or weak.
Your doctor may ask you to reduce the dose of neratinib or stop it for a while until the diarrhoea is better. You may need to go to hospital to have fluids through a drip if you are dehydrated.
Do not drive or operate machinery if you feel dizzy or weak.
Tummy pain
You may get pain in your tummy (abdomen), or have indigestion. Your doctor, nurse or pharmacist can give you advice or treatment to help. Contact the hospital straight away on the 24-hour number if your symptoms do not go away, or get worse.
Loss of appetite
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.
Feeling sick
Your doctor, nurse or pharmacist can prescribe anti-sickness drugs to help prevent or control sickness during your treatment. Take the drugs exactly as they tell you to. 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.
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:
- a sore mouth or throat affects how much you can drink or 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.
Skin changes
This treatment may affect your skin. It may cause a rash, which may be itchy. Your skin can become dry or sometimes cracked. 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.
Feeling tired (fatigue)
Feeling tired is a common side effect. Try to pace yourself and plan your day so you have time to rest between activities.
Being physically active can help to manage tiredness and give you more energy. It also:
- helps you sleep better
- reduces stress
- improves your bone health.
If you feel sleepy, do not drive or operate machinery.
Muscle pain
Other side effects
These side effects happen to less than 10 in 100 people (less than 10%) who have this treatment. Some of them are much rarer than this but they are still important to know about. Rare means a side effect that happens to less than 1 in 1,000 people (less than 0.1%).
Effects on the liver
This treatment can affect how the liver works. You will have regular blood tests to check this. Sometimes liver changes can be serious. Contact the hospital straight away on the 24-hour number if you have any of these symptoms:
- yellow skin or eyes
- feeling very sleepy
- dark urine (pee)
- unexplained bleeding or bruising
- pain in the right side of your tummy (abdomen).
Nail changes
This treatment can affect your nails. They may grow more slowly or break more easily. You might notice ridges or white or dark lines across your nails. These changes usually disappear as the nails grow out after treatment. Sometimes nails can become loose or fall off. Tell your doctor, nurse or pharmacist about any changes to your nails.
If the skin around your nails becomes sore and swollen, contact the hospital straight away on the 24-hour number. These might be signs of an infection.
Effects on the kidneys
This treatment can affect how the kidneys work. This is usually mild and goes back to normal after treatment ends. You will have blood tests and may have a urine sample test to check how well your kidneys are working
Drinking fluids helps protect your kidneys. The advice is usually to try to drink at least 2 litres (3½ pints) of fluid each day. But follow any advice from your doctor, nurse or pharmacist about how much is right for you.
Contact the hospital on the 24-hour number if you:
- have blood in your urine (pee)
- have foamy, frothy or bubbly urine
- are passing less urine or peeing less often than usual.
Nosebleed
Neratinib can cause nosebleeds. Tell your doctor or nurse if you have this.
Urinary tract infection
This treatment can cause an infection in your urinary tract. This is sometimes called a UTI. Signs of a UTI include:
- discomfort when you pee
- peeing more often than usual
- needing to pee urgently
- blood in your pee.
If you have any of these signs, contact the hospital on the 24-hour number you have been given. You may need antibiotics.
Dry mouth
Feeling faint
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 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.
Vaccinations
Cancer doctors usually recommend that people with cancer have vaccinations for flu and coronavirus (covid). They may also recommend other vaccines, such as Shingrix® for shingles. These all help reduce your risk of serious illness from these infections. Most people can have these vaccines, including people with weak immune systems.
You should not have live vaccines if your immune system is weak. This includes if you are having or recently had chemotherapy, radiotherapy or other cancer treatments that affect your immune system. Live vaccines can make you unwell because they contain a very weak version of the illness they protect you against. There are several live vaccines, including 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 a barrier contraception such as a condom, 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 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.
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
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer.
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References
Visit the electronic Medicines Compendium (eMC) to download a Patient Information Leaflet (PIL) for more detailed information. The leaflet lists all known side effects.
Date reviewed
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.
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.