Sorafenib (Nexavar®)

You will be given sorafenib to take at home. During a course of treatment, you usually see a:

• cancer doctor 
• cancer nurse or a specialist nurse
• specialist pharmacist.

This is who we mean when we mention doctor, nurse or pharmacist in this information.

During treatment, a nurse or person trained to take blood (phlebotomist) will take a blood sample from you. This is to check that it is safe for you to have treatment. 

You will speak to a doctor, nurse or pharmacist regularly during your treatment. They will talk to you about your blood results and ask how you have been feeling.

Make sure you:

• take selpercatinib capsules twice a day
• take then at the same time every day in the morning and evening
• swallow them whole with a glass of water
• do not chew, open or crush them
• take them with or without food - selpercatinib must be taken with a meal if you are taking medicines to reduce stomach acid. Your pharmacist can talk to you more about this.

If you are sick (vomit) just after taking them, or miss a dose, do not take an extra dose. Take your next dose at the usual time. Do not take a double dose. Contact the hospital on the 24-hour number for advice.

Other things to remember about your capsules

• 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.

Do not throw away unused capsules. Return them to your cancer team at the hospital.

You usually take sorafenib for as long as it keeps the cancer under control and any side effects can be managed. Some people may need to stop taking sorafenib because of side effects.

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.

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.

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

If you are passing loose stools 3 or more times a day and this is not normal for you, contact the hospital as soon as possible on the 24-hour number. Follow the advice they give you about:

• taking anti-diarrhoea medicines 
• drinking enough fluids to keep you hydrated and to replace lost salts and minerals
• any changes to your diet that might help. 

They might also ask you for a specimen of your stool to check for infection.

This treatment can cause constipation. Constipation means that you are not able to pass stools (poo) as often as you normally do. It can become difficult or painful. Here are some tips that may help:

• Drink at least 2 litres (3½ pints) of fluids each day.
• Eat high-fibre foods, such as fruit, vegetables and wholemeal bread.
• Do regular gentle exercise, like going for short walks.

If you have constipation, contact the hospital on the 24-hour number for advice. They can give you drugs called laxatives to help. 

If you have not been able to pass stools for over 2 days and are being sick, contact the 24-hour number straight away. 

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.

Some foods may taste different or have no taste. Try different foods to find out what tastes best to you. You may also get a bitter or metallic taste in your mouth. Your doctor, nurse or pharmacist can give you advice. It might help to try:

• sucking sugar-free sour or boiled sweets
• eating cold foods
• eating sharp-tasting fresh fruit.

Taste changes usually get better after treatment ends. We have more information about coping with changes to taste.

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.

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.

Sucking ice chips may sometimes help relieve mouth or throat pain.

Some people have indigestion or acid reflux when taking this treatment. Acid reflux is when acid comes up from the stomach into the gullet. Tell your doctor if you are affected. They can prescribe treatment to help.

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.

You may get pain in your muscles or joints during treatment. If this happens, tell your doctor, nurse or pharmacist. They can give you painkillers and advice. They can also tell you if any of the painkillers you usually take are suitable.

Tell them if the pain does not get better. Having warm baths and resting regularly may help.

Some people may get tummy pain, mouth pain, have headaches or pain in the area of the cancer. Tell your doctor if you have pain.

You might notice that your hair slowly gets thinner. But you are very unlikely to lose all the hair from your head. Your hair can also become more brittle. Your nurse can give you information about coping with hair loss. Your hair will usually go back to normal after treatment ends.

This treatment may cause high blood pressure (hypertension). You will have your blood pressure checked regularly. Some people may need to take tablets to control their blood pressure. Sometimes, if your blood pressure is too high and cannot be controlled, this treatment may be stopped permanently.

If you are already on treatment for your blood pressure, you will have regular blood pressure checks to make sure it stays under control. Talk to your doctor if you have any concerns.

This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If your white blood cell count is low, you may be more likely to get an infection. A low white blood cell count is called neutropenia.

An infection can be very serious when the number of white blood cells is low. It is important to get any infection treated as soon as possible. If you have any of the following symptoms, contact the hospital straight away on the 24-hour number:

• a temperature above 37.5°C 
• a temperature below 36°C
• you feel unwell, even with a normal temperature
• you have symptoms of an infection.

Symptoms of an infection include:

• feeling shivery and shaking
• a sore throat
• a cough
• breathlessness
• diarrhoea
• needing to pass urine (pee) often, or discomfort when you pass urine.

It is important to follow any specific advice your cancer treatment team gives you.

You will have regular blood tests during treatment. If your white blood cell count is low, your doctor may stop your treatment for a short time, until your cell count increases. Sometimes they will reduce the dose of your treatment.

This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot.

If the number of platelets is low, you may bruise or bleed easily. You may have:

• nosebleeds
• bleeding gums
• heavy periods
• blood in your urine (pee) or stools (poo)
• tiny red, brown or purple spots that may look like a rash – these spots can be harder to see if you have black or brown skin. 

If you have any unexplained bruising or bleeding, contact the hospital straight away on the 24-hour number. You may need a drip to give you extra platelets. This is called a platelet transfusion.

This treatment can reduce the number of red blood cells in your blood. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may feel:

• very low in energy
• breathless 
• dizzy and light-headed. 

If you have these symptoms, contact the hospital straight away on the 24-hour number. You may need treatment for anaemia. If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

This treatment may cause flu-like symptoms such as: 

• feeling hot or cold
• feeling shivery
• a headache
• an aching body. 

These symptoms can have other causes, such as an infection that may need treatment. If you feel unwell, contact your doctor for advice.

This treatment may lower blood sugar levels. If you have diabetes, you may need to check your blood sugar levels more often. Your doctor will talk to you about how to manage this, and you may be referred to a dietitian for some advice.

Tell your doctor if you notice ringing in your ears (tinnitus), or if you have other hearing changes.

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.

This treatment may affect how your liver works. This is usually mild. You will have blood tests to check how well your liver is working.

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.

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. These include the yellow fever vaccine and Zostavax^®, which is a different type of shingles 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.

Your doctor, nurse or pharmacist will advise you not to get pregnant or make someone pregnant while having this treatment and for some time afterwards. The drugs may harm a developing baby. It is important to use contraception to prevent pregnancy. Follow their advice about:

• what types of contraception to use 
• how long after treatment you should continue to use contraception. 

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.