Lomustine (CCNU)

• What lomustine is
• Common side effects
• Occasional side effects
• Rare side effects
• Important points to remember
• Immunisations and chemotherapy

Lomustine is also called CCNU. Doctors mainly use it to treat brain tumours, but also Hodgkin's lymphoma and non-Hodgkin's lymphoma.

Lomustine is one of a group of drugs known as alkylating agents. These work by sticking to one of the cancer cell's DNA strands. This stops the cell from dividing into 2 new cells.

Lomustine comes in blue capsules of 40mg. You should keep them in a tightly closed container and out of the reach of children. You take the capsules on an empty stomach at bedtime. They should be swallowed whole with plenty of water. You usually have lomustine as a single dose once every 6 weeks.

You usually have chemotherapy as a course of several cycles of treatment. The treatment plan for lomustine depends on which cancer you are being treated for. There is more about how doctors plan chemotherapy in this section of CancerHelp UK.

The side effects of lomustine are listed below. You can use the links to find out more about each side effect or click on search at the top of the page.

With this drug, many people have a temporary drop in the number of blood cells made by the bone marrow, leading to the following side effects

• Increased risk of getting an infection from a drop in white blood cells - it is harder to fight infections and you can become very ill. You may have headaches, aching muscles, a cough, sore throat, pain passing urine or feel cold and shivery. 
• Tiredness and breathlessness due to a drop in red blood cells (anaemia) - you may need a blood transfusion
• Bruising more easily due to a drop in platelets - you may have nosebleeds, bleeding gums after brushing your teeth, or lots of tiny red spots or bruises on your arms or legs (known as petechia).

These effects on your bone marrow can begin about 7 days after each treatment and usually go back to normal after about 21 to 28 days. Some of these side effects can be life threatening, particularly infections.  You should contact your doctor if you have any of these side effects.  Your doctor will check your blood counts regularly to see how well your bone marrow is working

Other common side effects include

• Fatigue during and after treatment – most people find their energy levels are back to normal within 6 months to a year
• This drug may have a harmful effect on a developing baby – do talk to your doctor about contraception before having treatment if there is any chance that you or your partner could become pregnant
• Feeling or being sick happens in about half of the people treated, can start within 4 to 6 hours of taking the capsules and last up to 24 hours - tell your doctor if your anti sickness medicines aren't helping, as there are others you can try
• Alcohol reaction - do not drink alcohol within an hour of taking your capsules
• Reaction with a drug called cimetidine (Tagamet) - while you are having lomustine, do not take cimetidine without telling your doctor first
• Loss of fertility - we don’t know exactly how this drug affects fertility so do talk with your doctor before starting treatment if this is important to you
• Women may stop having periods (amenorrhoea) but this may only be temporary

Some people have loss of appetite, which does not usually last long.

A few people may have the following side effects

• Sore mouth or mouth ulcers
• Diarrhoea - drink plenty of fluid and tell your doctor if diarrhoea becomes severe, or continues for more than 3 days
• Hair loss
• A skin rash
• Lomustine can sometimes affect the nerves and brain, causing confusion, extreme tiredness, difficulty walking or loss of balance. Tell your doctor if you have any of these symptoms.
• A cough or difficulty breathing is more likely if you have any other type of lung disease - your doctor may ask you to have lung and breathing tests before you start treatment
• Liver changes that are very mild and unlikely to cause symptoms – the liver will almost certainly go back to normal when treatment is finished, but you will have regular blood tests to check how well your liver is working
• Kidney changes that are mild and unlikely to cause symptoms may occur – they will almost certainly go back to normal when treatment is finished, but you will have regular blood tests to check how well your kidneys are working
• There is a small risk that you may get a second cancer some years after lomustine treatment.

The side effects above may be mild or more severe. A side effect may get better or worse through your course of treatment, or more side effects may develop as the course goes on. This depends on

• How many times you've had the drug before
• Your general health
• The amount of the drug you have (the dose)
• Other drugs you are having

Some side effects are inconvenient or upsetting but not damaging to your health.

Some side effects are serious medical conditions and need treating. Where we have urged you to contact your doctor, this is because

• Your side effect may need treating
• Your drug dose may need reducing to try to prevent the side effect

Tell your doctor about any other medicines you are taking, including vitamins, herbal supplements and other over the counter remedies - some drugs can react together.

Talk to your doctor, pharmacist or nurse about all your side effects so that they can help you manage them.

Your chemotherapy nurse, clinic or ward nurse will have given you a contact number. You can ring if you have any questions or problems. They can give you advice or reassure you. If in doubt, call them.

You should not have immunisations with live vaccines while you are having chemotherapy or for at least 6 months afterwards. In the UK, these include rubella, mumps, measles (usually given together as MMR), BCG and yellow fever. You can have other vaccines, but they may not give you as much protection as usual until your immune system has fully recovered from your chemotherapy.

It is perfectly safe for you to be in contact with other people who've had live vaccines as injections. There can be problems with oral vaccines, but no one in the UK is given an oral vaccine now. So there is no problem in being with any baby or child who has recently had any vaccination in the UK. If you live abroad, you might need to make sure that you aren't in contact with anyone who has had oral polio or oral typhoid vaccination recently.