Neratinib (Nerlynx®)

Neratinib comes as tablets, so you can take it at home.

During treatment you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse, and a specialist pharmacist. This is who we mean when we mention doctor, nurse or pharmacist in this information.

During your treatment you will have regular blood tests and appointments with your nurse, pharmacist or doctor. They will talk to you about your blood results and ask you how you have been feeling.

Always take your tablets exactly as explained. This is important to make sure they work as well as possible for you. You usually continue to take neratinib every day for 1 year, as long as it is working for you and side effects can be managed. Do not stop taking it without your doctor’s advice.

Your nurse or pharmacist will give you anti-diarrhoea tablets to take home with you. They may also give you anti-sickness drugs and other medicines to take home.

Neratinib is usually taken as 6 tablets once a day (240mg). The tablets must be swallowed whole with a glass of water. The tablets should not be chewed, broken or crushed. Take them in the morning with food. Take them at the same time every day.

You will also take anti-diarrhoea tablets for the first 1-2 months of neratinib treatment. The doctor, nurse or pharmacist will explain how to take them. They will also tell you if you still need them after the first 2 months of treatment.

Tell your doctor or pharmacist if you are taking any other medicines or start taking anything new. This is because neratinib can affect how they work, or they may affect how neratinib works.

There are some important things to remember when taking your tablets:

• 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.
• If you take any medicines to reduce stomach acid, talk to your doctor first. These drugs may interfere with the way neratinib works. Your doctor will advise you which medicines you can take and how to take them safely.
• If you forget to take your tablets or are sick after taking them, just take your next dose at the usual time. Do not take a double dose to make up for the forgotten dose.
• Keep the tablets in the original packaging and at room temperature, away from heat and direct sunlight.
• Keep the tablets in a safe place, out of the sight and reach of children.
• Get a new prescription before you run out of tablets.
• If treatment is stopped, return any remaining tablets to the pharmacist.

Neratinib can cause diarrhoea. Sometimes this can be severe. Diarrhoea means passing more stools (poo) than is usual for you, or having watery or loose stools. If you have a stoma, it will be more active than usual.

Your hospital team will give you anti-diarrhoea drugs to take at home for at least the first 1-2 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 diarrhoea more than 4 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 change the dose of neratinib or stop it for 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.

This treatment can cause liver inflammation and may affect how your liver works. This is called hepatitis. You will have regular blood tests to check this. If the blood tests show liver changes, you may have steroids.

Sometimes liver changes can be serious. Contact the hospital straight away on the 24-hour number 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
• pain in the right side of your tummy (abdomen)
• loss of appetite.

You may get pain in your tummy (abdomen), or have indigestion when taking neratinib. Let your doctor know if this happens to 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.

Your doctor can give you anti-sickness drugs to help prevent or control sickness during your treatment. Take the drugs exactly as your nurse or pharmacist tells you. It is easier to prevent sickness than to treat it after it has started.

If you feel sick, take small sips of fluids often and eat small amounts regularly. It is important to drink enough fluids. If you continue to feel sick, or are sick (vomit) more than once in 24 hours, contact the hospital as soon as possible. They will give you advice. Your doctor or nurse may change the anti-sickness drug to one that works better for you.

This treatment may cause a sore mouth and throat. You may also get mouth ulcers. This can make you more likely to get an infection in your mouth or throat. 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.

This treatment may affect your skin. It may cause a rash, which might be itchy. You skin can become dry or cracked. Your doctor or nurse can tell you more about this.

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

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.

You may get pain or cramping in your muscles. If this happens, tell your doctor so they can give you painkillers. Tell them if the pain or cramping does not get better. Having warm baths and taking regular rests may help.

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 out.

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.

Tips to look after your nails:

• Keep your nails clipped short and clean. 
• Avoid using very hot water when washing your hands or bathing.
• Moisturise your nails and cuticles regularly.
• Avoid false nails, gels or other acrylics during treatment – it is okay to use water-based nail polish. 
• Wear gloves to protect your nails when working in the house or garden.
• If your toenails are affected, wear well-fitting shoes, or shoes with open toes to cushion them.

Tell your doctor or nurse about any changes to your nails. They can give you advice or arrange for you to see a podiatrist. They are a foot care specialist.

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 to check how well your kidneys are working. Contact the hospital on the 24-hour number if you:

• have blood in your urine (pee) 
• are passing less urine or peeing less often than usual.

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.

Neratinib can cause nosebleeds. Tell your doctor or nurse if you have this.

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.

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.

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.

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.

If you have sex during this treatment, use barrier protection such as a condom or dental dam. This will protect your partner if any of the drug is in your semen or vaginal fluid.

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.

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.

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.