Neratinib (Nerlynx)

Neratinib is a type of targeted cancer drug. It is pronounced ne-rat-ti-nib. It is also known as Nerlynx.

It is a treatment for early stage breast cancer that is hormone receptor positive and human epidermal growth factor receptor 2 positive (HER2 positive ).

You have tests on your breast cancer cells to check for these.

How does neratinib work?

Neratinib is a targeted cancer drug that works on a protein called human epidermal growth factor receptor 2 (HER2). HER2 proteins make cells divide and grow. Some cancers have large amounts of HER2 proteins which can cause cancer cells to divide and grow faster.

Neratinib works by locking onto the HER2 on the cancer cells. So it stops the cells from growing.

How do you take neratinib?

You have neratinib as tablets. You take the tablets with food and swallow them whole with water. You should not crush, chew or break them.

Taking your tablets

Speak to your pharmacist if you have problems swallowing the tablets.

Whether you have a full or an empty stomach can affect how much of a drug gets into your bloodstream.

You should take the right dose, no more or less.

Talk to your healthcare team before you stop taking a cancer drug or if you miss a dose.

How often do you take neratinib?

You take neratinib once a day, usually in the morning. You take them every day for a year.

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.

You might also have an assessment of your heart before and during your treatment .

Side effects

Side effects can vary from person to person. They also depend on what other treatments you're having. 

When to contact your team

Your doctor, nurse or pharmacist will go through the possible side effects. They will monitor you 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

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.

Common side effects

These side effects happen in more than 10 in 100 people (more than 10%). You might have one or more of them. They include:

Diarrhoea

Contact your advice line if you have diarrhoea. For example, 2 or more extra loose bowel movements than usual each day. 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.

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.

Tiredness and weakness

You might feel very tired and as though you lack energy.

Various things can help you to reduce tiredness and cope with it, for example exercise. Some research has shown that taking gentle exercise can give you more energy. It is important to balance exercise with resting.

Skin rash

A rash can also be itchy. Less commonly your skin might get dry, cracked and split. Tell your doctor or nurse if you have a skin rash. They can prescribe medicine to stop the itching and soothe your skin.

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.

Tummy (abdominal) pain

Tell your doctor or nurse if you have this. They can check for the cause of the pain and give you medicine to help. 

Sore mouth

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.

Muscle spasms

Let your doctor or nurse know if you have muscle spasms during or after having treatment. 

Occasional side effects

These side effects happen in between 1 and 10 out of every 100 people (between 1 and 10%). You might have one or more of them. They include:

• infection of your water works (urinary tract infection) – you might have a stinging or burning sensation when you wee, you might go very often or need to go very urgently

• lack of fluid in your body (dehydration)

• feeling weak, faint or unsteady

• nosebleeds

• bloating of your tummy

• dry mouth

• heartburn or indigestion

• liver changes - these are usually picked up on blood tests so you have regular blood tests to check this

• nail changes - they may break easily, the colour might change or you might develop an infection

• weight loss

• high levels of a waste product (creatinine) in your blood – you have regular blood tests to check for this

Rare side effects

This side effect happens in fewer than 1 in 100 people (less than 1%). 

• Your kidneys stop working properly (you have regular blood tests to check for this) – symptoms might include feeling or being sick, weeing less than usual, blood in your wee, tiredness, confusion, swelling (fluid build up) in your ankles, feet and hands

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, foods and drinks

Cancer drugs can interact with medicines, herbal products, and some food and drinks. We are unable to list all the possible interactions that may happen. An example is grapefruit or grapefruit juice which can increase the side effects of certain drugs.

Tell your healthcare team about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies. Also let them know about any other medical conditions or allergies you may have.

Loss of fertility

It is not known whether this treatment affects fertility in people. Talk to your doctor before starting treatment if you think you may want to have a baby in the future.

Contraception and pregnancy

It is unknown whether treatment may or may not harm a baby developing in the womb. It is important not to become pregnant or get someone pregnant while you are having treatment.

Neratinib might stop hormonal contraceptives from working properly. Women should use a barrier method of contraception during treatment and for at least 1 month after finishing treatment. You should do this even if you are using another type of contraception.

Men should use a barrier method of contraception, such as a condom during treatment and for at least 3 months after finishing treatment.

Talk to your healthcare team about contraception you can use during treatment.

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

If you are having tests or treatment for anything else, always mention your cancer treatment. For example, if you are visiting your dentist.

Driving or operating machinery

This drug can cause tiredness and dizziness. Don’t drive or operate heavy machinery if you have these symptoms.

Immunisations

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.