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Lomustine (CCNU)

Lomustine is a chemotherapy drug used to treat a number of different cancers. Lomustine is also called CCNU.

What chemotherapy is

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

You must take tablets and capsules according to the instructions your doctor or pharmacist gives you.

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.

Never stop taking a cancer drug without talking to your specialist first.

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:

  • surgery
  • radiotherapy
  • other chemotherapy drugs

Tests

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.

Side effects

We haven't listed all the side effects. It is very unlikely that you will have all of these side effects, but you might have some of them at the same time.

How often and how severe the side effects are can vary from person to person. They also depend on what other treatment you are having. For example, your side effects could be worse if you are also having other drugs or radiotherapy.

When to contact your team

Your doctor or nurse 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. 

Contact your doctor or nurse immediately if you have signs of infection, including a temperature above 37.5C or below 36C.

Side effects

You might have one or more of these side effects. They include:

Increased risk of getting an infection

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. 

Brethlessness 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 petechia).

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.

Loss of appetite

You might lose your appetite for various reasons when you are having cancer treatment. Sickness, taste changes or tiredness can all put you off food and drinks.

Liver changes

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 levels of chemicals produced by the liver.

Sore mouth

Mouth sores and ulcers can be painful. Keep your mouth and teeth clean; drink plenty of fluids; avoid acidic foods such as oranges, lemons and grapefruits; chew gum to keep the mouth moist and tell your doctor or nurse if you have ulcers.

Hair loss

You could lose all your hair. This includes your eyelashes, eyebrows, underarm, leg and sometimes pubic hair. Your hair will grow back once treatment has finished. But it is likely to be softer. And it may grow back a different colour or be curlier than before. 

Diarrhoea

Contact your advice line if you have diarrhoea, that is 4 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 of liquid to replace the fluid lost.

Lung changes

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:

  • confusion
  • extreme tiredness
  • difficulty walking
  • loss of balance
Talk to your doctor straight away if you have any of these symptoms.

Skin rash

Skin problems include a skin rash, dry skin and itching. This usually goes back to normal when your treatment finishes.

Kidney changes

To help prevent kidney damage, it is important to drink plenty of water. You might also have fluids into your vein before and after treatment. You have blood tests before your treatments to check how well your kidneys are working.

Second cancers

There is a small risk that you may get a second cancer some years after this treatment. 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.

Fertility

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 may be able to store sperm before starting treatment. Women may be able to store eggs or ovarian tissue but this is rare.

Breastfeeding

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.

Immunisations

Don’t have immunisations with live vaccines while you’re having treatment and for at least 6 months afterwards.

In the UK, live vaccines include rubella, mumps, measles, BCG, yellow fever and shingles vaccine (Zostavax).

You can:

  • have other vaccines, but they might not give you as much protection as usual
  • have the flu vaccine (as an injection)
  • be in contact with other people who've had live vaccines as injections

Avoid close contact with people who’ve recently had live vaccines taken by mouth (oral vaccines) such as oral polio or the typhoid vaccine.

This also includes the rotavirus vaccine given to babies. The virus is in the baby’s poo for up to 2 weeks and could make you ill. So, avoid changing their nappies for 2 weeks after their vaccination if possible. Or wear disposable gloves and wash your hands well afterwards.

You should also avoid close contact with children who have had the flu vaccine nasal spray if your immune system is severely weakened. 

Alcohol

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.

Information and help

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