Lomustine is used to treat:
If you're struggling to find what you need, call our Support line on 0808 808 0000 (Monday to Friday, 9am-8pm)More ways to contact us
Lomustine is a chemotherapy drug used to treat brain tumours, melanoma, lung cancer and lymphoma. It may also 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.
Lomustine is given as capsules. You usually have it as an outpatient. Your cancer doctor or nurse will tell you how often you will have it.
Like all chemotherapy drugs, lomustine can cause side effects. Some of the side effects can be serious, so it is important to read the detailed information below.
Your healthcare team can give you advice on how to manage any side effects. Tell your doc-tor or nurse straight away if you:
Rarely, side effects may be life-threatening. Your cancer doctor or nurse can explain the risk of these side effects to you.
If you need medical attention for any reason other than cancer, always tell the healthcare staff that you are having this 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 you to have 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 chemo-therapy. Your nurse will tell you when your treatment is likely to be ready.
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. Each cycle of lomustine is usually a single dose taken once every six to eight 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 them exactly as they have been explained to you.
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, 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 with-in 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:
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 haven’t 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.
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.
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.
Chemotherapy 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:
Symptoms of an infection include:
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.
Chemotherapy can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. Tell your doctor or nurse if you have any bruising or bleeding that you can’t explain. This includes:
Some people may need a drip to give them extra platelets. This is called a platelet transfusion.
Chemotherapy 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 chemotherapy. 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.
This treatment can affect your appetite. Do not worry if you don’t 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:
If you have diarrhoea, contact the hospital for advice. Try to drink at least two litres (three and a half pints) of fluids every day. It can help to avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods.
Lomustine can affect how your kidneys and liver work. This is usually mild and goes back to normal after treatment. You are very unlikely to notice any problems, but your doctor or nurse will take regular blood samples to check your kidneys and liver are working properly.
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.
This treatment can cause changes to the lungs. Tell your doctor if you develop:
You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.
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.
Rarely, lomustine can increase the risk of developing a second cancer years later. But the benefits of treatment usually far outweigh the risk. Your doctor can talk to you about this.
Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:
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 chemotherapy or be harmful when you are having lomustine. This includes medicines you can buy in a shop or chemist, such as cimetidine and some anti-epileptic drugs. Tell your cancer doctor about any medicines you are taking, including vitamins, herbal drugs and complementary therapies.
You should speak to your doctor before getting any live vaccines during and after your treatment. Your immune system may be weak, so vaccines may be less effective and could be harmful.
Examples of live vaccines are:
Alcohol can affect how lomustine works. You will be advised not to drink alcohol on the days you are taking your chemotherapy.
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 become pregnant or to father a child during treatment. This is because the drugs may harm a developing baby. It is important to use effective contraception during, and for six months after chemotherapy. You can talk to your doctor or nurse about this.
Women are advised not to breastfeed while having this treatment and for some time afterwards. 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 father a child. If you are worried about this, it is important to talk with your doctor before you start treatment.
Chemotherapy can sometimes stop the ovaries working. You may not get a period every month and they may eventually stop. In some women, this is temporary, but for others it is permanent and they start the menopause.
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.
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.
Order booklets or audio CDs about chemotherapy. It includes how it works, having treatment and how it might affect you.
All types of treatment can have different side effects. Know what to expect to help you find the best way for you to handle them.
Our campaigns fight for real change for people affected by cancer. By taking action, you can help transform the lives of people with cancer. Join us in demanding the best in cancer support.
What's happening near you? Find out about support groups, where to get information and how to get involved with Macmillan where you are.
Read about our Community champions' experience of chemotherapy. They talk about what to bring to treatment, side effects and friendship between patients.
A support group for everything about chemotherapy, being treated and side effects. Tell others about your experiences and get answers to your questions.
We rely on a number of sources to gather evidence for our information. If you’d like further information on the sources we use, please feel free to contact us on: firstname.lastname@example.org
All our information is reviewed by cancer or other relevant professionals to ensure that it’s accurate and reflects the best evidence available. We thank all those people who have provided expert review for the information on this page.
Our information is also reviewed by people affected by cancer to ensure it is as relevant and accessible as possible. Thank you to all those people who reviewed what you're reading and have helped our information to develop.
You could help us too when you join our Cancer Voices Network – find out more at: http://www.macmillan.org.uk/cancervoices
Need to talk? Call us free* 0808 808 00 00 Monday to Friday, 9am-8pm
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: 668265007
We make every effort to ensure that the information we provide is accurate and up-to-date but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication or third party information or websites included or referred to in it.