This information should ideally be read with our general information about chemotherapy and your type of cancer.
How lomustine is given
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Lomustine comes in capsules so you can take it at home. During treatment, you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse at the clinic. 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 it is okay for you to have chemotherapy.
You will also see a doctor or nurse before you have chemotherapy. They will ask you about how you have been. If your blood results are alright on the day of your treatment, the pharmacist will prepare your chemotherapy. Your nurse will tell you when your treatment is likely to be ready.
Taking your chemotherapy tablets
The nurse or pharmacist gives you the chemotherapy capsules to take when you are at home. Always take your tablets exactly as instructed. This is important to make sure they work as well as possible for you.
They will also give you anti-sickness drugs to take. Again, take all your tablets exactly as instructed.
Lomustine capsules are taken as a single daily dose. Swallow them whole with a large glass of water on an empty stomach.
If you are sick just after taking the capsules, contact the hospital.
Other things to remember about your capsules:
Keep them in the original package.
Store them at room temperature away from heat and direct sunlight.
Keep them safe and out of the reach of children.
Don’t open the capsules.
Return any remaining capsules to the pharmacist if your treatment is stopped.
Always wear the disposable gloves that you will be given by the hospital when taking your drugs.
Your course of chemotherapy
You have chemotherapy as a course of several sessions (or cycles) of treatment over a few months. Each cycle of lomustine is normally a single daily dose taken once every 6-8 weeks.
Lomustine can be given on its own or in combination with other drugs or cancer treatments. This will depend on the type of cancer you have. Your doctor or nurse will tell you more about this and the number of cycles you are likely to have.
Possible side effects of lomustine
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We explain the most common side effects of lomustine here. But we don’t include all the rare ones that are unlikely to affect you.
You may get some of the side effects we mention, but you are very unlikely to get all of them. If you are having other chemotherapy drugs as well, you may have some side effects that we don’t list here. Always tell your doctor or nurse about the side effects you have.
Your doctor can prescribe drugs to help control some side effects. It is very important to take them exactly as your nurse or pharmacist has instructed. This means they will be more likely to work better for you. Your nurse will give you advice about managing your side effects. After your treatment is over, the side effects will start to improve.
Contact the hospital
Your nurse will give you telephone numbers for the hospital. You can call them if you feel unwell or need advice any time of day or night. Save these numbers in your phone or keep them somewhere safe.
Risk of infection
Chemotherapy can reduce the number of white blood cells in your blood. This will make you more likely to get an infection. When the number of white blood cells is low, it’s called neutropenia.
Contact the hospital straight away on the contact number you’ve been given if:
your temperature goes over 37.5°C (99.5°F) or over 38°C (100.4°F), depending on the advice given by your chemotherapy team
you suddenly feel unwell, even with a normal temperature
you have symptoms of an infection – this can include feeling shaky, a sore throat, a cough, diarrhoea or needing to pass urine a lot.
The number of white blood cells usually increases steadily and returns to normal before your next treatment. You will have a blood test before having more chemotherapy. If your white blood cells are still low, your doctor may delay your treatment for a short time.
Bruising and bleeding
Lomustine 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 you can’t explain. This includes nosebleeds, bleeding gums, blood spots or rashes on the skin. Some people may need a drip to give them extra platelets.
Anaemia (low number of red blood cells)
Lomustine 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 (blood transfusion).
This may happen in the first few days after chemotherapy. Your doctor will prescribe anti-sickness (anti-emetic) drugs to help prevent or control sickness. Take the drugs exactly as your nurse or pharmacist explains to you. It’s easier to prevent sickness than to treat it after it has started.
If you still feel sick or are vomiting, contact the hospital as soon as possible. They can give you advice and change the anti-sickness drug to one that works better for you.
Feeling very tired is a common side effect. It’s often worse towards the end of treatment and for some weeks after it’s finished. Try to pace yourself and get as much rest as you need. It helps to balance this with some gentle exercise, such as short walks. If you feel sleepy, don’t drive or operate machinery.
Your mouth may become sore and you may get ulcers. This can make you more likely to get an infection in your mouth. Gently clean your teeth and/or dentures morning and night and after meals. Use a soft-bristled or children’s toothbrush. Your nurse might ask you to rinse your mouth regularly or use mouthwashes. It’s important to follow any advice you are given and to drink plenty of fluids.
Tell your nurse or doctor if you have any problems with your mouth. They can prescribe medicines to prevent or treat mouth infections and reduce any soreness.
Your doctor can prescribe drugs to control diarrhoea. Let them know if it is severe or if it doesn’t get better. Make sure you drink at least two litres (three and a half pints) of fluids every day if you have diarrhoea.
Your hair may thin but you’re unlikely to lose all the hair from your head. It is almost always temporary and your hair will grow back after chemotherapy ends. Your nurse can give you advice about coping with hair loss.
Changes in the way the kidneys and liver work
Lomustine can affect how your kidneys and liver work. This is usually mild and goes back to normal after treatment. You will have blood tests before chemotherapy to check how well your kidneys and liver are working.
Less common side effects of lomustine
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Effects on the lungs
Lomustine can cause changes to the lungs. Always tell your doctor if you develop wheezing, a cough, fever or feel breathless. You should also let them know if any existing breathing problems get worse. If necessary, they can arrange for you to have tests to check your lungs.
Effects on the nervous system
Lomustine can affect the nervous system. Rarely, you may feel drowsy or confused, or you may feel dizzy or unsteady. Tell your doctor or nurse straight away if you notice any of these symptoms. It’s 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 this risk. Your doctor can talk to you about this.
Other information about lomustine
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Blood clot risk
Cancer increases the chance of a blood clot (thrombosis) and chemotherapy can add to this. A clot can cause symptoms such as pain, redness and swelling in a leg, breathlessness and chest pain. Contact your doctor straight away if you have any of these symptoms. A blood clot is serious but your doctor can treat it with drugs that thin the blood. Your doctor or nurse can give you more information.
Some medicines can interact with chemotherapy or be harmful when you are having chemotherapy. This includes medicines you can buy in a shop or chemist. Tell your doctor about any medicines you are taking, including over-the-counter drugs, complementary therapies and herbal drugs.
Lomustine can interact with alcohol. You’ll be advised not to drink alcohol on the days you are taking your chemotherapy.
Lomustine may affect your fertility (being able to get pregnant or father a child). If you are worried about this, you can talk to your doctor or nurse before treatment starts.
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’s important to use effective contraception during and for a few months after chemotherapy. You can talk to your doctor or nurse about this.
If you have sex within the first couple of days of having chemotherapy, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluid.
Changes to your periods
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.
Women are advised not to breastfeed during treatment and for a few months after. This is in case there is chemotherapy in their breast milk.
Medical and dental treatment
If you need to go into hospital for any reason other than cancer, always tell the doctors and nurses that you are having chemotherapy. Explain you are taking chemotherapy tablets that no one should stop or restart without advice from your cancer doctor. Give them contact details for your cancer doctor.
Talk to your cancer doctor or nurse if you think you need dental treatment. Always tell your dentist you are having chemotherapy.
This section has been compiled using a number of reliable sources including:
With thanks to Christine Clarke, Specialist Oncology Pharmacist, who reviewed this edition.
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