Lomustine is used to treat brain tumours, melanoma, lung cancer and lymphoma. It may sometimes be used to treat other cancers. It is best to read this information with our general information about chemotherapy and the type of cancer you have.
Your doctor will talk to you about this treatment and its possible side effects before you agree (consent) to have treatment.
During treatment you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse. This is who we mean when we mention doctor or nurse in this information.
Before or on the day of treatment, a nurse or person trained to take blood (phlebotomist) will take a blood sample from you. This is to check that your blood cells are at a safe level for chemotherapy.
You will see a doctor or nurse before you have chemotherapy. They will ask you how you have been feeling. If your blood results are okay, the pharmacist will prepare your chemotherapy. Your nurse will tell you when your treatment is likely to be ready.
Your course of chemotherapy
Lomustine comes in capsules, so you can take it at home. Lomustine may be given on its own, or with other chemotherapy drugs. It may be given alongside other treatments such as surgery or radiotherapy.
You usually have a course of several cycles of treatment over a few months. Your nurse or doctor will discuss your treatment plan with you. They may give you a copy of the treatment plan to take home with you. Each cycle of lomustine is usually a single dose taken once every 6 to 8 weeks.
The nurse or pharmacist will give you the capsules to take home. Always take them exactly as explained. This is important to make sure they work as well as possible for you. You may be given capsules of different strengths.
Your nurse or pharmacist may also give you anti-sickness drugs and other medicines to take home. Take all your capsules or tablets exactly as you have been told to.
Taking lomustine capsules
Your doctor, nurse or pharmacist will tell you how and when to take the capsules. They should be swallowed whole with a glass of water. The capsules should not be chewed, opened or crushed.
Taking the capsules last thing at night and on an empty stomach may help to prevent sickness.
If you forget to take the capsules, you should take the missed dose as soon as possible within the same day. If a full day has gone by, let your doctor or nurse know. Do not take a double dose.
Other things to remember about your capsules:
- 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 capsules, contact the hospital. Do not take another dose.
- If your treatment has stopped, return any unused capsules to the pharmacist.
We explain the most common side effects of this treatment here. We also include some less common side effects.
You may get some of the side effects we mention, but you are unlikely to get all of them. If you are also having treatment with other cancer drugs, you may have some side effects that we have not listed here. Always tell your doctor, nurse or pharmacist about any side effects you have.
Your doctor can give you drugs to help control some side effects. It is important to take them exactly as your nurse or pharmacist explains. This means they will be more likely to work for you. Your nurse will give you advice about managing your side effects. After your treatment is over, most side effects start to improve.
Serious and life-threatening side effects
Some cancer treatments can cause severe side effects. Rarely, these may be life-threatening. Your cancer doctor or nurse can explain the risk of these side effects to you.
Contact the hospital
Your nurse will give you telephone numbers for the hospital. If you feel unwell or need advice, you can call them at any time of the day or night. Save these numbers in your phone or keep them somewhere safe.
We cannot list every side effect for this treatment. There are some rare side effects that are not listed. You can visit the electronic Medicines Compendium (eMC) for more detailed information.
Risk of infection
This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If the number of white blood cells is low, you are more likely to get an infection. A low white blood cell count is called neutropenia.
If you have an infection, it is important to treat it as soon as possible. Contact the hospital straight away on the 24-hour contact number you have if:
- your temperature goes over 37.5°C (99.5F)
- you suddenly feel unwell, even with a normal temperature
Symptoms of an infection include:
- feeling shivery
- a sore throat
- a cough
- needing to pass urine often.
It is important to follow any specific advice your cancer treatment team gives you.
The number of white blood cells will usually return to normal before your next treatment. You will have a blood test before having more chemotherapy. If your white blood cell count is low, your doctor may delay your treatment for a short time, or slightly reduce the dose.
Bruising and bleeding
This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot.
Tell your doctor if you have any bruising or bleeding that you cannot explain. This includes:
- bleeding gums
- tiny red or purple spots on the skin that may look like a rash.
Some people may need a drip to give them extra platelets. This is called a platelet transfusion.
Anaemia (low number of red blood cells)
This treatment can reduce the number of red blood cells in your blood. These cells carry oxygen around the body. If the number of red blood cells is low, you may be tired and breathless. Tell your doctor or nurse if you feel like this. If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.
You may feel sick in the first few days after this treatment. Your doctor will give you anti-sickness drugs to help prevent or control sickness. 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 and eat small amounts often. If you continue to feel sick, or if you vomit more than once in 24-hours, contact the hospital as soon as possible. They will give you advice and may change the anti-sickness drug to one that works better for you.
Loss of appetite
This treatment can affect your appetite. Do not worry if you do not eat much for a day or two. But if your appetite does not come back after a few days, tell your nurse or dietitian. They will give you advice. They may give you food or drink supplements.
Feeling tired is a common side effect. It is often worse towards the end of treatment and for some weeks after it has finished. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can give you more energy. If you feel sleepy, do not drive or operate machinery.
You may get a sore mouth or mouth ulcers. This can make you more likely to get a mouth infection.
Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.
If your mouth 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.
This treatment may cause diarrhoea. 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.
If you have diarrhoea:
- try to drink at least 2 litres (3½ pints) of fluids each day
- avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods
- contact the hospital for advice.
Changes in the way the kidneys and liver work
Your hair may get thinner but you are unlikely to lose all the hair from your head. Hair loss usually starts after your first or second treatment. It is almost always temporary and your hair will usually grow back after treatment ends. Your nurse can talk to you about ways to cope with hair loss.
Effects on the lungs
This treatment can cause changes to the lungs. Tell your doctor if you develop:
- a cough
- a fever (high temperature)
You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.
Effects on the nervous system
Lomustine can affect the nervous system. Rarely, you may feel drowsy or confused, dizzy or unsteady. Tell your doctor or nurse straight away if you notice any of these symptoms. It is important not to drive or operate machinery if you notice these effects.
This treatment can increase the risk of developing a second cancer years later. This is rare. The benefits of treatment usually far outweigh this risk. Your doctor can talk to you about this.
Blood clot risk
Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:
- pain, redness or swelling in a leg or arm
- chest pain.
If you have any of these symptoms, contact a doctor straight away.
A blood clot is serious, but can be treated with drugs that thin the blood. Your doctor or nurse can give you more information.
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.
Your doctor or nurse may talk to you about vaccinations. These help reduce your risk of getting infections.
Doctors usually recommend that you have a flu jab, which is an inactivated vaccination. People with weak immune systems can have this type of vaccination.
If your immune system is weak, you need to avoid live vaccinations such as yellow fever. Your cancer doctor or GP can tell you more about live vaccinations.
Coeliac disease or wheat allergy
Lomustine capsules contain wheat. If you have coeliac disease or a wheat allergy, let your doctor know before taking the capsules.
Your doctor will advise you not to get pregnant or make someone pregnant while having this treatment. The drugs can harm a developing baby. It is important to use effective contraception during your treatment, and for 6 months afterwards. You can talk to your doctor or nurse about this.
Women are advised not to breastfeed while having this treatment. This is because the drugs could be passed to the baby through breast milk.
Some cancer drugs can affect whether you can get pregnant or make someone pregnant.
If you are a woman, your periods may become irregular or stop. This may be temporary, but for some women it is permanent. Your menopause may start sooner than it would have done.
If you have sex in the first few days after chemotherapy, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluids.
Medical and dental treatment
If you need medical treatment for any reason other than cancer, always tell the doctors and nurses that you are having cancer treatment. Give them the contact details for your cancer doctor so they can ask for advice.
If you think you need dental treatment, talk to your cancer doctor or nurse. Always tell your dentist you are having cancer treatment.