Thalidomide

Thalidomide is a type of targeted cancer drug. It is also known as Thalidomide Celgene. It is a treatment for myeloma and myelofibrosis.

What is thalidomide?

Thalidomide is a type of targeted cancer drug. It’s a treatment for people not able to have high dose chemotherapy with a stem cell transplant for myeloma.

If you’re having it as a treatment for myeloma you have thalidomide with other cancer drugs.

Sometimes a doctor might prescribe thalidomide to treat myelofibrosis. This is not included in the drug's licence. Doctors can prescribe this when they think it might help a patient for a specific reason. In this case, they can prescribe that drug for the patient. This is called 'off label' prescribing.

Some people might have thalidomide as part of a clinical trial.

How does thalidomide work?

Thalidomide works in different ways. It:

• stops cancer cells developing by stopping cancer cells from dividing and growing
• stops cancers making their own blood vessels which they need to be able to grow
• stimulates some of the immune system cells to attack myeloma cells

How do you take thalidomide?

You take thalidomide as capsules. You swallow them whole with a glass of water. You should take them before going to bed, as thalidomide can make you sleepy. This helps you to feel less sleepy at other times of the day.

You should take the right dose, not more or less.

Talk to your specialist or advice line before you stop taking a cancer drug.

How often do you take thalidomide?

You usually take thalidomide every day. Your doctor will tell you how many capsules to take each day and how long for.

If you have thalidomide with other cancer drugs you usually have it as a cycle of treatment every 4 to 6 weeks. Your doctor will let you know the number of cycles you will have.

A cycle of treatment is the time between the start of one round of drugs and the start of the next round.

If you take thalidomide on its own you have it for as long as it helps you, and the side effects aren't too bad.

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.

What are the side effects of thalidomide?

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.

When to contact your team

Your doctor, pharmacist 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
• the side effects are affecting your daily life

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.

You usually have thalidomide in combination with other drugs. The side effects listed below are for the combination treatments.

Your side effects may be different if you are having thalidomide on its own.

Common side effects

These side effects happen in more than 10 in 100 people (more than 10%). You might have one or more of them. They include:

Increased risk of infection

Increased risk of getting an infection

Infections can sometimes be life threatening. You should contact your advice line urgently if you think you have an infection.

Breathlessness and looking pale

You might be

breathless and look pale

Bruising, bleeding gums or nose bleeds

This is due to a

drop in the number of platelets in your blood

Sleepiness and feeling tired

Thalidomide can make you feel very sleepy and drowsy. To help prevent feeling like this during the day you should take it before going to bed.

This drug can also make you feel as though you have no energy or strength and feel weak, but this is less common.

You might feel very tired or find you are falling asleep during the day. Let your doctor know straight away if this happens. Also do not drive or operate machinery if you have these symptoms.

Numbness or tingling and nerve pain

You may have

numbness or tingling in fingers

Some people might also have nerve pain (neuropathic pain). It's caused by pressure on nerves or the spinal cord, or by damage to the nerves. People often describe this pain as burning, shooting, tingling or a feeling of crawling under their skin. It can be difficult to describe exactly how it feels. Nerve pain can sometimes be more difficult to treat than other types of pain.

These side effects can make it more difficult to complete fiddly tasks such as doing up buttons or walking. Do let your doctor know if you are having these symptoms.

Shaky hands (tremor)

You may develop shaky hands (tremor) with this treatment.

Dizziness

This drug might make you feel dizzy. Don’t drive or operate machinery if you have this.

Constipation

Constipation

Swelling of hands and feet

Swelling of hands and feet is due to fluid build up. This is called oedema. Let your doctor or nurse know if you have any swelling.

Occasional side effects

These side effects happen in between 1 and 10 out of every 100 people (between 1 and 10%). You might have one or more of them. They include:

• confusion
• skin changes such as a rash and dry skin
• mood changes, including depression
• dry mouth
• feeling weak, faint or unsteady
• blurred vision
• changes in your heart including a slow heart rate, heart failure, or rarely a fast heartbeat or chest pain
• feeling or being sick
• blood clots that can be life threatening; signs are pain, redness and swelling where the clot is. Feeling breathless can be a sign of a blood clot in the lung. Contact your advice line or doctor straight away if you have any of these symptoms
• breathlessness and a cough that could be due to infections such as pneumonia or it might be due to changes in the lung tissue making it less flexible
• fits (seizure)
• hearing problems, such as difficulty hearing or hearing loss
• indigestion - a burning feeling or pain in your chest after eating
• kidney disease or kidney failure
• low blood pressure
• feeling generally unwell
• a spinning feeling in your head, making it difficult to stand up and move normally
• risk of developing a second cancer such as acute myeloid leukaemia (AML), or more rarely myelodysplastic syndrome (MDS). This also depends on if you are taking other cancer drugs with thalidomide

Rare side effects

These side effects happen in fewer than 1 in 100 people (less than 1%). You might have one or more of them. They include:

• blockage of the bowel
• Inflammation of the cells lining your stomach wall
• a hole in part of your large bowel (colon)

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:

• changes to the levels of chemicals in the blood due to breakdown of cancer cells (tumour lysis syndrome) - you have regular blood tests to check for this
• an allergic reaction that can cause a rash, shortness of breath, redness or swelling of the face and dizziness - some allergic reactions can be life threatening, alert your nurse or doctor if notice any of these symptoms
• a rare disorder of the nerves causing headaches, fits, confusion and changes in vision - contact your health team straight away. This condition is reversible
• the level of your thyroid hormones may drop (hypothyroidism). You may feel tired or cold, gain weight, feel sad or depressed, or your voice may deepen. You will have regular blood tests to check your thyroid hormone levels
• liver problems
• problems having sex such as loss of interest or enjoyment, speak to your doctor or nurse if sex has become difficult for you
• severe skin reaction that may start as tender red patches which leads to peeling or blistering of the skin. You may feel feverish and your eyes may be sensitive to light. Contact your advice line if you have these symptoms, this could be life threatening

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.

Alcohol

Do not drink alcohol while you are taking thalidomide. Alcohol can make you feel sleepy and thalidomide can make you even sleepier.

Pregnancy and contraception

This treatment may harm a baby developing in the womb. It is important not to become pregnant or father a child for at least 4 weeks before your treatment, while you’re having treatment and for 4 weeks afterwards.

Women of childbearing age must use reliable contraception for at least 4 weeks before the start of treatment, while you are having treatment and at least 4 weeks after treatment. This includes breaks in between cycles of treatment. You will have a pregnancy test before and every 4 weeks during treatment. You will also have one 4 weeks after finishing your treatment.

Men taking thalidomide need to use contraception such as a condom during treatment and for 7 days after if:

• their partner is pregnant
• their partner is able to become pregnant
• their partner is not using effective contraception
• they have had sterilisation (vasectomy)

Your doctor will ask you to sign a consent form. This is to confirm you understand the information given about thalidomide and the risks to a developing baby.

Talk to your doctor or nurse if you have any questions about effective contraception before you start treatment.

Fertility

It is not known whether this treatment affects fertility in people. Talk to your doctor before starting treatment if you think you may want to have a baby in the future.

Breastfeeding

It is not known whether this drug comes through into the breast milk. Doctors usually advise that you don’t breastfeed during this treatment.

Handling of thalidomide

Some people worry about taking thalidomide but it does not cause physical defects in adults. Pregnant women and children should not touch or handle thalidomide. You must store it in a place children cannot reach it.

Treatment for other conditions

Always tell other doctors, nurses, pharmacists or dentists that you’re having this treatment. For example, 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 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 immune system recovers from treatment.

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. Sometimes people who have had the live shingles vaccine can get a shingles type rash. If this happens they should keep the area covered.

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.

Donating blood

More information about this treatment

For further information about this treatment and possible side effects go to the electronic Medicines Compendium (eMC) website. You can find the patient information leaflet on this website.

You can report any side effect you have to the Medicines Health and Regulatory Authority (MHRA) as part of their Yellow Card Scheme.