Lomustine is a chemotherapy drug used to treat a number of different cancers. Lomustine is also called CCNU.
What is chemotherapy?
Chemotherapy uses anti cancer (cytotoxic) drugs to destroy cancer cells. The drugs circulate throughout the body in the bloodstream.
How lomustine works
Lomustine is a type of chemotherapy drug known as an alkylating agent. These drugs work by sticking to one of the cancer cell's DNA strands. This stops the cell from growing and dividing into 2 new cells.
How you have lomustine
Lomustine comes as capsules.
You take the capsules on an empty stomach at bedtime.
Taking your tablets or capsules
Whether you have a full or empty stomach can affect how much of a drug gets into your bloodstream.
You should take the right dose, not more or less.
Talk to your specialist or advice line before you stop taking a cancer drug.
When you have lomustine
You usually have lomustine as a single dose once every 6 to 8 weeks. You might also have other treatments such as:
- other chemotherapy drugs
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.
How often and how severe the side effects are can vary from person to person. They also depend on what other treatments you're having. For example, your side effects could be worse if you're also having other drugs or radiotherapy.
When to contact your team
Your doctor, nurse or pharmacist will go through the possible side effects. They will monitor you closely 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 effect
A common side effect of lumustine is an increased risk of infection. This happens in more than 10 in 100 people (more than 10%).
Increased risk of getting an infection is due to a drop in white blood cells. Symptoms include a change in temperature, aching muscles, headaches, feeling cold and shivery and generally unwell. You might have other symptoms depending on where the infection is.
Infections can sometimes be life threatening. You should contact your advice line urgently if you think you have an infection.
Other side effects
There isn't enough information to work out how often these side effects might happen. You might have one or more of them. They include:
Breathlessness and looking pale
You might be breathless and look pale due to a drop in red blood cells. This is called anaemia.
Bruising, bleeding gums, or nosebleeds
This is due to a drop in the number of platelets in your blood. These blood cells help the blood to clot when we cut ourselves. You may have nosebleeds or bleeding gums after brushing your teeth. Or you may have lots of tiny red spots or bruises on your arms or legs (known as petechiae).
Tiredness and weakness (fatigue)
Tiredness and weakness (fatigue) can happen during and after treatment - doing gentle exercises each day can keep your energy up. Don't push yourself, rest when you start to feel tired and ask others for help.
Feeling or being sick
Feeling or being sick is usually well controlled with anti sickness medicines. Avoiding fatty or fried foods, eating small meals and snacks, drinking plenty of water, and relaxation techniques can all 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 treating it once it has started.
Loss of appetite
You might lose your appetite for various reasons when you are having cancer treatment. Sickness, taste changes or tiredness can put you off food and drinks.
You might have liver changes that are usually mild and unlikely to cause symptoms. They usually go back to normal when treatment finishes. You have regular blood tests to check for any changes in the way your liver is working.
Mouth sores and ulcers can be painful. It helps to keep your mouth and teeth clean, drink plenty of fluids, avoid acidic foods such as oranges, lemons and grapefruits, and chew gum to keep the mouth moist. Tell your doctor or nurse if you have ulcers.
You could lose all your hair. This includes your eyelashes, eyebrows, underarm, leg and sometimes pubic hair. Your hair will usually grow back once treatment has finished but it is likely to be softer. It may grow back a different colour or be curlier than before.
Contact your advice line if you have diarrhoea, such as if you've had 4 or more loose watery poos (stools) in 24 hours. Or if you can't drink to replace the lost fluid. Or if it carries on for more than 3 days.
Your doctor may give you anti diarrhoea medicine to take home with you after treatment. Eat less fibre, avoid raw fruits, fruit juice, cereals and vegetables, and drink plenty to replace the fluid lost.
You might develop a cough or breathing problems. This could be due to infection, such as pneumonia or inflammation of the lungs (pneumonitis). Let your doctor or nurse know straight away if you suddenly become breathless or develop a cough.
Problems with the nerves and brain
Lomustine can sometimes affect the nerves and brain causing:
- extreme tiredness
- difficulty walking
- loss of balance
To help prevent kidney damage, it is important to drink plenty of water. You might also have fluids into your vein before, during and after treatment. You have blood tests before your treatments to check how well your kidneys are working.
There is a risk that you may develop some types of blood cancer years after this treatment. These include:
- acute leukaemia
- myelodysplastic syndrome
Your doctor will discuss this with you.
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 drink
Cancer drugs can interact with some other medicines and herbal products. Tell your doctor or pharmacist about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies.
Pregnancy and contraception
This drug may harm a baby developing in the womb. It is important not to become pregnant or father a child while you are having treatment with this drug and for at least 6 months afterwards. Talk to your doctor or nurse about effective contraception before starting treatment.
You may not be able to become pregnant or father a child after treatment with this drug. Talk to your doctor before starting treatment if you think you may want to have a baby in the future.
Men might be able to store sperm before starting treatment. And women might be able to store eggs or ovarian tissue. But these services are not available in every hospital, so you would need to ask your doctor about this.
Don’t breastfeed during this treatment because the drug may come through into your breast milk.
Treatment for other conditions
Always tell other doctors, nurses, pharmacists or dentists that you’re having this treatment if you need treatment for anything else, including teeth problems.
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
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.
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.
Alcohol can increase the side effects of lomustine, and make you feel very unwell. Don't drink alcohol while taking this medicine.
More information about this treatment
For further information about this treatment go to the electronic Medicines Compendium (eMC) website.
You can report any side effect you have to the Medicines Health and Regulatory Authority (MHRA) as part of their Yellow Card Scheme.
This page is due for review. We will update this as soon as possible.