CTD

During a course of treatment, you usually see a:

• cancer doctor 
• chemotherapy nurse or a specialist nurse
• specialist pharmacist.

This is who we mean when we mention doctor, nurse or pharmacist in this information.

Before or on the day of each treatment, a nurse or person trained to take blood (phlebotomist) will take a blood sample from you. This is to check that it is safe for you to have chemotherapy. 

You will speak to a doctor, nurse or pharmacist before you have chemotherapy. They will talk to you about your blood results and ask how you have been feeling. If your blood results are okay, the pharmacist team will prepare your chemotherapy.

Cancer treatment is usually given as a course of several cycles of treatment over a few months. 

CTD is taken as capsules and tablets, so you can take it at home. A cycle of CTD is usually given over 21 days (3 weeks) or 28 days (4 weeks). Your nurse or doctor will tell you which cycle you are going to have. You might take:

• cyclophosphamide once a week for either 3 or 4 weeks 
• thalidomide every day for either 21 or 28 days 
• dexamethasone as 2 short courses over 21 or 28 days. 

Your doctor, nurse or pharmacist will discuss your treatment plan with you. They may give you a copy of the treatment plan to take home with you. 

The nurse or pharmacist will give you the CTD drugs to take home. Always take them exactly as explained. This is important to make sure they work as well as possible for you. You may be given capsules or tablets of different strengths. 

Your nurse or pharmacist may also give you anti-sickness drugs and other medicines to take home. Take all your capsules or tablets exactly as they have been explained to you.

Swallow the capsules and tablets whole with a glass of water. Do not chew, open or crush them. Take them at the same time every day.

It is important to: 

• take dexamethasone with or just after breakfast
• take thalidomide at bedtime, as it can make you feel sleepy
• avoid grapefruit and grapefruit juice when you take cyclophosphamide, because they can affect how cyclophosphamide works.

If you forget to take the cyclophosphamide or dexamethasone, you should take the missed dose as soon as possible within the same day. If it has been a full day, tell your doctor or nurse. 

If you forget to take thalidomide and less than 12 hours have passed, take your capsules straight away. If more than 12 hours have passed, do not take your missed dose. Just take your usual dose at the usual time the next day. Tell your doctor or nurse if you have missed a dose.

Other things to remember about your capsules and tablets:

• Wash your hands after taking them.
• Other people should avoid direct contact with them. 
• Keep them in the original package and at room temperature, away from moisture, heat and direct sunlight.
• Keep them safe and out of sight and reach of children.
• If you are sick just after taking them, contact the hospital. Do not take another dose.

If your treatment is stopped, return any unused capsules or tablets to the pharmacist.

This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If your white blood cell count is low, you may be more likely to get an infection. A low white blood cell count is called neutropenia.

An infection can be very serious when the number of white blood cells is low. It is important to get any infection treated as soon as possible. If you have any of the following symptoms, contact the hospital straight away on the 24-hour number:

• a temperature above 37.5°C 
• a temperature below 36°C
• you feel unwell, even with a normal temperature
• you have symptoms of an infection.

Symptoms of an infection include:

• feeling shivery and shaking
• a sore throat
• a cough
• breathlessness
• diarrhoea
• needing to pass urine (pee) often, or discomfort when you pass urine.

It is important to follow any specific advice your cancer treatment team gives you.

You will have regular blood tests during treatment. If your white blood cell count is low, your doctor may stop your treatment for a short time, until your cell count increases. Sometimes they will reduce the dose of your treatment.

This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot.

If the number of platelets is low, you may bruise or bleed easily. You may have:

• nosebleeds
• bleeding gums
• heavy periods
• blood in your urine (pee) or stools (poo)
• tiny red, brown or purple spots that may look like a rash – these spots can be harder to see if you have black or brown skin. 

If you have any unexplained bruising or bleeding, contact the hospital straight away on the 24-hour number. You may need a drip to give you extra platelets. This is called a platelet transfusion.

This treatment can reduce the number of red blood cells in your blood. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may feel:

• very low in energy
• breathless 
• dizzy and light-headed. 

If you have these symptoms, contact the hospital straight away on the 24-hour number. You may need treatment for anaemia. If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

Cancer and some cancer treatments such as thalidomide can increase the risk of a blood clot. You may be given drugs that help to reduce the risk of getting a blood clot.

Symptoms of a blood clot include:

• throbbing pain, redness or swelling in a leg or arm
• suddenly feeling breathless or coughing
• sharp chest pain, which may be worse when you cough or take a deep breath. 

If you have any of these symptoms, contact the hospital straight away on the 24-hour contact number you have been given. If you cannot get through to your doctor, call the NHS urgent advice number on 111.

A blood clot is serious, but it can be treated with drugs that thin the blood (anticoagulants). Your doctor or nurse can give you more information. 

You can help reduce the risk of developing a blood clot by:

• staying active during treatment
• drinking plenty of fluids, especially water.

You may be given anticoagulants to help prevent a clot.

Your doctor, nurse or pharmacist will prescribe anti-sickness drugs to help prevent or control sickness. Take the drugs exactly as they tell you to, even if you do not feel sick. It is easier to prevent sickness than to treat it after it has started.

If you feel sick, take small sips of fluid often and eat small amounts regularly. It is important to drink enough fluids. If you continue to feel sick, or if you are sick (vomit) 1 to 2 times in 24 hours, contact the hospital on the 24-hour number as soon as possible. They will give you advice. They may change your anti-sickness treatment. Let them know if you still feel sick.

This treatment may cause a sore mouth and throat. You may also get mouth ulcers. This can make you more likely to get a mouth or throat infection. Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.

Contact the hospital straight away on the 24-hour number, if:

• a sore mouth or throat affects how much you can drink or eat 
• your mouth, tongue, throat or lips have any blisters, ulcers or white patches. 

They can give you advice, and mouthwash or medicines to help with the pain or to treat any infection. Follow their advice and make sure you:

• drink plenty of fluids
• avoid alcohol and tobacco
• avoid food or drinks that irritate your mouth and throat.

This treatment can cause constipation. Constipation means that you are not able to pass stools (poo) as often as you normally do. It can become difficult or painful. Here are some tips that may help:

• Drink at least 2 litres (3½ pints) of fluids each day.
• Eat high-fibre foods, such as fruit, vegetables and wholemeal bread.
• Do regular gentle exercise, like going for short walks.

If you have constipation, contact the hospital on the 24-hour number for advice. They can give you drugs called laxatives to help. 

If you have not been able to pass stools for over 2 days and are being sick, contact the 24-hour number straight away. 

This treatment may cause diarrhoea. Diarrhoea means passing more stools (poo) than is normal for you, or having watery or loose stools. You may also have stomach cramps. If you have a stoma, it may be more active than usual. 

If you are passing loose stools 3 or more times a day and this is not normal for you, contact the hospital as soon as possible on the 24-hour number. Follow the advice they give you about:

• taking anti-diarrhoea medicines 
• drinking enough fluids to keep you hydrated and to replace lost salts and minerals
• any changes to your diet that might help. 

They might also ask you for a specimen of your stool to check for infection.

Your hair will get thinner. Or you may lose all the hair from your head. You may also lose your eyelashes and eyebrows, as well as other body hair. Hair loss usually starts after your first or second treatment.

If you want to cover up hair loss, there are different ways you can do this. Your nurse will give you information about coping with hair loss. 

Remember to protect your skin from the sun. Use suncream with a sun protection factor (SPF) of at least 30 on your scalp. Or cover up with a hat or scarf.

Hair loss is almost always temporary. Your hair will usually grow back after treatment ends.

You may get pain in your tummy (abdomen), or have indigestion. Your doctor can give you drugs to help improve these symptoms. Tell them if the pain gets worse or does not get better.

Steroids can also irritate the stomach. It may help to take the steroid tablets with food.

Steroids can make you feel hungrier than usual, and you may gain weight. Your appetite should go back to normal when you stop taking steroids. If you are worried about gaining weight, talk to your doctor or nurse. 

Steroids can raise your blood sugar levels. Your nurse will check your blood sugar regularly for this. They may also test your urine for sugar. Symptoms of raised blood sugar include:

• feeling thirsty 
• needing to pass urine often 
• feeling tired. 

Tell your doctor or nurse if you have these symptoms.

If you have diabetes, your blood sugar levels may be higher than usual. Your doctor will talk to you about how to manage this. You may need to adjust your insulin or tablet dose.

Steroids can affect your mood. You may:

• feel anxious or restless
• have mood swings
• have problems sleeping.

Taking your steroids in the morning may help you sleep better at night.

Tell your doctor or nurse if you have any of these side effects. They may make some changes to your treatment if the side effects become a problem.

Feeling tired is a common side effect of this treatment. It is often worse towards the end of treatment and for some weeks after it ends. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can help you feel less tired. 

If you feel sleepy, do not drive or use machinery.

Thalidomide can cause dizziness, blurred vision or make you feel sleepy (drowsy). Try to sit upright for a few minutes before standing to help avoid dizziness.

Do not drink alcohol while you are taking thalidomide. This is because alcohol can make you sleepy and thalidomide can make you even sleepier. Steroids can also cause blurred vision. 

Do not drive or operate machinery if you have these side effects. Talk to your doctor or nurse if you notice any of these effects.

CTD may affect your skin. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day. CTD can cause a rash, which may be itchy.

Sometimes, thalidomide can cause a more serious skin rash that blisters. Let your doctor know straight away if this happens.

Always tell your doctor or nurse about any skin changes. They can give you advice and may give you creams or medicines to help. Any changes to your skin are usually temporary and improve when treatment finishes.

This treatment may affect the nerves in your fingers and toes. This can cause numbness, tingling or pain in your hands or feet. This is called peripheral neuropathy. You might find it hard to do fiddly tasks such as fastening buttons or tying shoelaces.

If you have these symptoms, always tell your doctor, nurse or pharmacist. They sometimes need to change the drug or the dose of the drug. The symptoms usually improve slowly after treatment ends. But for some people they continue and are a long-term side effect of treatment.

This treatment may cause your ankles and legs to swell. This is due to fluid building up. Tell your doctor or nurse if this happens, as there are medicines that can help. If the swelling is uncomfortable, they may give you support stockings to wear. The swelling gets better after your treatment ends.

Cyclophosphamide may irritate your bladder and cause discomfort when you pass urine (pee). It is important to:

• drink plenty of fluids during the first 24 hours after chemotherapy – at least 2 litres (3½ pints) 
• empty your bladder regularly 
• try to pass urine as soon as you feel you need to.

Contact the hospital on the 24-hour straight away if: 

• you find it difficult to pass urine 
• you feel any discomfort or stinging when you pass urine
• you notice blood in your urine. 

Thalidomide can cause a temporary fall in your blood pressure. This can make you feel dizzy for a few moments if you stand up quickly. It can help to move slowly from lying to sitting and from sitting to standing.

Tell your doctor or nurse if you have ever had problems with your blood pressure.

CTD can affect how your kidneys and liver work. This is usually mild and goes back to normal after treatment. You will have blood tests to check how well your kidneys and liver are working.

Thalidomide may cause hearing changes, including some hearing loss. Tell your doctor if you notice any changes in your hearing.

You must take part in a pregnancy prevention programme while taking thalidomide. This is because it may cause severe abnormalities in developing babies.

Your doctor will give you information about not becoming pregnant or making someone pregnant during and after treatment with thalidomide. 

Your doctor or specialist nurse will give you some written information about the risks of thalidomide and the best ways to prevent pregnancy. They will ask you to sign a consent form once you have read the information.

If you have not yet had your menopause, you will have a pregnancy test before starting treatment with thalidomide. This will be repeated every 4 weeks during treatment. You will also have a pregnancy test 4 weeks after treatment finishes. You must use contraception for 4 weeks before treatment, during treatment and for 4 weeks after treatment finishes.

You must use an effective form of contraception, such as:

• an implant
• injection
• a progesterone-only oral pill. 

The combined oral contraceptive pill is not recommended because it increases your risk of developing blood clots. 

If you think you may be pregnant at any time during your treatment, contact your doctor or specialist nurse straight away.

You must use a condom during sex while taking thalidomide and for at least 1 week after treatment finishes. This is to protect your partner from thalidomide, which can pass into your semen.

If your partner thinks they might be pregnant during your treatment, contact your doctor or specialist nurse straight away.

This treatment can affect whether you can get pregnant or make someone pregnant.

If you have periods, they may become irregular or stop. This may be temporary, but sometimes it is permanent. Your menopause may start sooner than it would have done. 

There may be ways to preserve fertility for men and women. If you are worried about fertility, it is important to talk with your doctor before you start chemotherapy treatment.

Some medicines can affect how this treatment works or be harmful while you are having it. Always tell your cancer doctor, nurse or pharmacist about any drugs you are taking or planning to take, such as: 

• medicines you have been prescribed
• medicines you buy in a shop, pharmacy or online
• vitamins or supplements 
• herbal drugs and complementary or homeopathic therapies
• recreational drugs – for example, cannabis.

Doctors usually recommend that people with cancer have vaccinations for flu and for coronavirus (covid). These help reduce your risk of serious illness from these infections. Most people can have these vaccines, including people with weak immune systems.

If your immune system is weak, you should not have live vaccinations. Live vaccines can make you unwell because they contain a very weak version of the illness they will protect you against. Live vaccines include Zostavax^®, which is a shingles vaccine, and the yellow fever vaccine.

It is important to ask your doctor, nurse or pharmacist for advice about having vaccinations. They can explain what vaccines are right for you and when it is best to have them.

Do not drive if you feel dizzy or tired, or if your vision is affected. If you are not sure whether it is safe for you to drive, talk to your doctor.

You are advised not to breastfeed while having this treatment, or for some time after treatment ends. This is because the drugs could be passed to the baby through breast milk. 

Your doctor, nurse or pharmacist can give you more information.

If you need medical treatment for any reason other than cancer, always tell the healthcare professional that you are having cancer treatment. Give them the contact details for your cancer doctor or cancer team so they can ask for advice.

If you have appointments with a dentist, always tell them you are having cancer treatment. Talk to your cancer team before you have any dental treatment.