CHEMOTHERAPY FOR PATIENT

Chemotherapy

Your questions answered

Patient Information Series


Contents

(please ignore page numbers)

What is cancer?

Who will plan my treatment?

Research

Questions you may wish to ask your doctor about research studies or clinical trials

Consenting for treatment

How long will I have to make up my mind about treatment?

What is chemotherapy?

Why is chemotherapy given?

How does chemotherapy work?

When is chemotherapy given?

Questions you may wish to ask your doctor about treatment

How will my chemotherapy treatment be planned?

Questions you may wish to ask your doctor about

chemotherapy

How often will I have chemotherapy?

How long will my treatment last?

How will I know if my chemotherapy is working?

Why has my chemotherapy plan been changed?

How is chemotherapy given?

Oral chemotherapy

When should I take my tablets?

What should I do if I am sick after taking my chemotherapy tablets?

How is chemotherapy given into a vein?

Types of venous access devices

Cannula

Skin-tunnelled catheter


PICC

Implanted port

Will having chemotherapy hurt?

How long does it take to give intravenous chemotherapy?

What is intrathecal chemotherapy?

Where will I have my chemotherapy treatment?

Can I still take other medicines during my chemotherapy treatment?

Will chemotherapy affect my everyday activities?

What if I have planned a holiday?

Can I have a drink?

Are there any side effects or complications?

Your blood

Infection

Anaemia

Bruising or bleeding

Your digestive system

Sore mouth

Taste changes

Nausea and vomiting

Changes in appetite

Diarrhoea or constipation

Your skin

Your hair

Your fertility

For women

Pregnancy

For men

Other effects

Eyes

Chemotherapy


Hearing

The nervous system

Changes in lung function

Damage to the heart muscle

The bladder

How will I feel during my chemotherapy

Emotional wellbeing

Fatigue

What help is available during my treatment?

What happens when chemotherapy treatment has finished?

Glossary

Sources of information and support

Notes / Questions

How can you contact us?

Titles available in this series

Chemotherapy


What is cancer?

Our bodies are made up of tiny structures called cells, which are not visible to the naked eye. These cells are ‘building blocks’ and groups of cells form the tissues and organs of the body. The cells in these different tissues, such as the brain, liver, kidneys and lungs, each have a unique function.

Normally cells reproduce themselves by dividing in a regular, controlled fashion so that growth and repair of the body tissues can take place.

Sometimes this control goes wrong and the cells divide in an uncontrolled way and are abnormal. This abnormal and excessive growth of tissue cells is called a tumour and can be either benign or malignant.

Benign tumours are usually limited to a small area and are often slow growing. They only cause problems because of their size or where they happen to be situated. Once they have been treated, often by an operation, they don’t usually cause any further problems.

Cancers or malignant tumours also start within a limited area but they can spread to nearby organs or tissues. Cancer cells may be carried in the bloodstream to distant sites in the body. Here they may form new tumours called metastases or ‘secondaries’.

Cancer cells may also be carried in the lymphatic system which normally helps the body to fight infection. It is made up of a series of nodes (glands) and vessels (tubes) linked throughout the body.

Cancer is a word used to describe many different diseases which have different causes and which are treated in different ways. All cancers can be treated although not all can be cured.


Who will plan my treatment?

A multidisciplinary team will plan your treatment for you.

The multidisciplinary team may include:

• A haematologist (a specialist doctor who diagnoses and treats blood disorders. These include cancers such as leukaemias [affecting the bone marrow], lymphomas [affecting lymphatic tissue] and myelomas [affecting the plasma cells in the bone marrow]).

• A pathologist (a specialist doctor who examines body tissues and organs under the microscope)

• A radiologist with a special interest in your type of cancer (who specialises in the use of x-rays and other imaging to diagnose

and treat disease)

• A specialist nurse who provides information and support

Other health care specialists (for example, pharmacists, dietitians, social workers, physiotherapists) may also be represented on this team and be involved in your care.

It depends on the type of cancer you have as to which of the above health professionals will be part of your multidisciplinary team. For example, not all cancers can be treated with surgery.

The multidisciplinary team meets regularly to discuss the best treatment options for each patient in their care. They will take into account the results of tests and your general health. Your doctor will then discuss the different treatment options available to you, taking into account your own preferences. You may find it helpful to take a family member or friend with you when your treatment is being planned.



Consenting for treatment

Before you can give your consent, your doctor will discuss with you what the treatment is likely to involve, the benefits and risks, and any available alternative treatments. You may also be given some written information about the treatment protocol that has been planned for you. It is important that you understand the information you have been given – ask questions if you don’t understand or if you want more information. To help you think about what you want to ask your doctor, you may find the questions on page 14 helpful. You will then be asked to sign a consent form, which is a written record that you have agreed to the planned treatment. The main benefits and risks associated with the treatment will be written on the consent form before you sign it. You will then be given a copy of this.

How long will I have to make up

my mind about treatment?

Ask your doctor how long you can take to make up your mind. The answer will depend on the type of cancer you have, as some cancers grow much faster than others. While it may be important to start treatment as soon as possible, many people will have plenty of time to make a decision.

Your treatment plan may involve one or more treatments, for example, surgery and / or chemotherapy and / or radiotherapy. You will be asked to sign consent forms for each treatment. Before each treatment starts, you will be asked to confirm that you agree to treatment.

It is important to remember that once you have made a decision about treatment, you can change your mind at any time, even after you have signed a consent form.


What is chemotherapy?

Chemotherapymeans treatment with anti-cancer drugs and they are given to destroy or control cancer cells. There are over 50 different drugs. Drugs may be given on their own or several different drugs may be given together. This is called combination chemotherapy.

Why is chemotherapy given?

Many types of cancer can be treated with chemotherapy. The aim of the treatment will depend on the type of cancer you have and how advanced it is.

• To cure the cancer – chemotherapy is given to destroy all the cancer cells.

• To reduce the possibility of cancer coming back – chemotherapy may also be given to destroy any cancer cells that may be

present in your body that are too small to detect. It is important to destroy these cells.

• To relieve symptoms – chemotherapy may be given to shrink a tumour if it is causing any symptoms.

How does chemotherapy work?

The drugs enter your bloodstream and therefore reach all parts of your body. This is called systemic treatment. Most radiotherapy and surgery are called local treatments. Chemotherapy drugs destroy cancer cells by damaging them so they can’t divide and grow.

The drugs can also affect normal cells which are growing and dividing quickly. Damage to normal cells may cause side effects (see page 26). These are usually temporary because healthy cells quickly grow back to normal. Permanent damage is rare with most chemotherapy regimens.


When is chemotherapy given?

Sometimes chemotherapy is used on its own in cancers that respond well to this treatment. However, chemotherapy is often used with other treatments.

neo-adjuvant therapy – chemotherapy may be given before surgery or radiotherapy to shrink the tumour.

adjuvant therapy – chemotherapy can also be used to help destroy any cancer cells that may remain after surgery or radiotherapy. The aim is to reduce the likelihood of your cancer returning in the future.

chemoradiation – chemotherapy may be combined with radiotherapy.

palliative chemotherapy – if the cancer has spread to other parts of the body, the chemotherapy drugs carried in your bloodstream can reach these cancer cells. The aim is to help relieve symptoms.

Questions you may wish to ask

your doctor about treatment

Before you can make a decision about treatment, you need to feel you have been given enough information. All treatments carry risks as well as benefits and thinking through the possible options can help you to decide. You should be given a chance to ask questions, however it is not always easy to know what to ask. To help you think about what you want to ask your doctor, you may find the following questions helpful.

• What are the main treatment options?

• What are the benefits of each of the options?

• What are the risks, if any, of each option?

• What are the risks if I decide to do nothing for the time being?

• How long can I take to decide about what treatment I have?

• Will this treatment cure me?

• When will I know if the treatment has worked?

• What will happen if this treatment doesn’t work?


How will my chemotherapy treatment

be planned?

The chemotherapy treatment your doctor recommends will depend on several factors. These include:

• The type of cancer you have

• Where the cancer is in your body

• Where in the body it has spread to (if it has)

• Your general health

You will be offered the best standard treatment that current research shows will be most helpful in your situation. This is why you may

meet other people with the same cancer as you who are having different chemotherapy treatments.

Questions you may wish to ask your

doctor about chemotherapy

It is important that you understand what will happen and why. You should be given a chance to ask questions. To help you think about what you want to ask your doctor, you may find the following questions helpful.


• What drug or drugs will I be given?

• How will the drugs be given?

• Will I have to spend any time in hospital?

• How often will I need treatment?

• How long will my treatment go on for?

• Can I still take other medicines during my chemotherapy treatment?

• How will I feel during treatment and are there any side effects

I can expect?

• If there are any side effects, what can be done to help me cope with them?

• How long will it take for me to recover after I have finished the treatment?

• Are there any long-term side effects?

• Will I be able to continue with the same lifestyle that I’m leading now?

• Can I talk to someone who has had the same treatment?

• Who should I contact if I am worried about my diagnosis, treatment or prognosis?

How often will I have chemotherapy?

A course of chemotherapy is given according to a protocol (plan) and how often you have chemotherapy will depend on this. Each course usually consists of several cycles of chemotherapy with a rest period in between each cycle. The rest periods are often longer than the treatment periods so most of the time you’re not actually having chemotherapy. The rest periods allow your body to recover from any unwanted effects of the drug. As you have more cycles of treatment these rest periods may be extended. Don’t worry, this isn’t unusual.


If you’re having oral chemotherapy (tablets or capsules), you may take smaller doses daily for several weeks or months before having a rest period.

Example1

A course of chemotherapy = six cycles

Cycle 1

Day 1

Days 2-21

chemotherapy

rest period

Cycle 2

Day 1

Days 2-21

chemotherapy

rest period

Cycle 3

Day 1

Days 2-21

chemotherapy

rest period

Cycle 4

Day 1

Days 2-21

chemotherapy

rest period

Cycle 5

Day 1

Days 2-21

chemotherapy

rest period

Cycle 6

Day 1

Days 2-21

chemotherapy

rest period

= total of 18 weeks


Example 2

A course of chemotherapy = six cycles

Cycle 1

Day 1

Days 2-7

Day 8

Days 9-21

chemotherapy

rest period

chemotherapy

rest period

Cycle 2

Day 1

Days 2-7

Day 8

Days 9-21

chemotherapy

rest period

chemotherapy

rest period

Cycle 3

Day 1

Days 2-7

Day 8

Days 9-21

chemotherapy

rest period

chemotherapy

rest period

Cycle 4

Day 1

Days 2-7

Day 8

Days 9-21

chemotherapy

rest period

chemotherapy

rest period

Cycle 5

Day 1

Days 2-7

Day 8

Days 9-21

chemotherapy

rest period

chemotherapy

rest period

Cycle 6

Day 1

Days 2-7

Day 8

Days 9-21

chemotherapy

rest period

chemotherapy

rest period

= total of 18 weeks

How long will my treatment last?

The length of your treatment will depend on how well your disease responds to the drugs, for example, when your cancer starts to shrink. Your doctors may choose to give you treatment for several weeks and then check on your progress. Overall, it may take several months to complete your course of chemotherapy.

When adjuvant chemotherapy is given, the doctor may plan your treatment for a certain length of time known to be effective for people with similar tumours, for example, six months.


How will I know if my chemotherapy is working?

Your doctor will monitor your progress throughout treatment. There are several tests which may be repeated during your treatment. They include scans, x-rays blood tests and bone marrow examinations. All the tests check on your health and the way chemotherapy is affecting you. They will vary from person to person so if you’re not sure why you’re having a particular test, ask your doctor or nurse.

Whether or not you have side effects from chemotherapy is not an indication of how well the treatment is working.

Why has my chemotherapy plan been changed?

Sometimes, as a result of the tests you have during treatment, your chemotherapy plan may be changed. For example, if the blood test shows that your ‘blood count’ is low, your doctor may decide to give you a longer rest period between cycles. Or, your doctor may reduce the dose of the drugs.

If the results of tests show that the chemotherapy treatment isn’t working well enough, then your doctor may change your treatment plan. Sometimes, different drugs may need to be tried to find out which ones are best for you.

How is chemotherapy given?

How chemotherapy is given will depend on the type of cancer you have and the drugs used.

Chemotherapy is most commonly given in one of two ways:

• By mouth (orally)

• By injection into a vein using a syringe or in an infusion (‘drip’)

• Other – occasionally, a drug may be injected into a muscle or under the skin. Sometimes it can be injected into your spine, lungs or bladder, if that is where treatment is needed.


You may have one drug, several drugs or different drugs given at different times. You may have tablets or injections or both.

Oral chemotherapy

Some chemotherapy drugs can be taken as tablets or capsules, which means you can continue your treatment at home. You will still need to visit the outpatient department for regular check-ups.

When should I take my tablets?

All bottles of tablets given out by the pharmacy department carry instructions about how and when to take them. You will also be told whether or not you have to take them with food and how to store them safely. Please follow these instructions carefully and if they’re not clear, ask your doctor, nurse or pharmacist. You may be given an extra information sheet with some medicines.

You will probably be provided with only enough tablets for one cycle of therapy. This is so your doctor can assess your progress before you start your second cycle. Sometimes, it may be necessary to change the dose of the tablets. Your chemotherapy tablets have been prescribed specifically for you and you should not give them to anyone else. If you have any chemotherapy tablets left when you have finished treatment, take them back to the hospital pharmacy.

What should I do if I am sick after taking my

chemotherapy tablets?

It is very important that you take your tablets regularly on the days specified. If you miss a dose for any reason, contact the ward for advice. Do not take a double dose.

If you are sick immediately and you can see the tablet, then repeat the dose one hour later. If you are sick later (even five minutes later), contact the ward for advice.


If, however, you are using liquid or opened capsules, or you were asked to crush or dissolve tablets, the dose should not be repeated.

How is chemotherapy given into a vein?

When chemotherapy is given intravenously (into a vein), it is given through a venous access device.

Types of venous access devices

There are several different types of devices available. These include:

Cannula

This is a small tube which is put into a vein in your lower arm or the back of your hand. It is inserted at the beginning of each treatment and is removed after the chemotherapy has been given. Once the cannula has been taped to your arm, the chemotherapy drugs can

be injected slowly into the vein through it. Sometimes the drugs are diluted and given through a ‘drip’ (intravenous infusion) into a vein in your arm.

Some treatment drugs cannot be given into the veins of the hand or the arm and can only be given through one of the central venous access devices described below.

Skin-tunnelled catheter

Sometimes it may be known by its brand name, for example, a Hickman line. It is a fine tube which is inserted through your chest into a large vein leading to your heart. Because it is made of a non-irritant material, for example, silicone, it can be left in place for several weeks or months. As well as using it to give you fluids and drugs, it may also be used to take blood samples.


PICC

A PICC is inserted into a vein in your arm, at or above the bend in the elbow. It goes into the large vein leading to your heart.

Implanted port

An implanted port is a device, which is inserted under the skin into your body. The usual position is on the chest. The port is made up of a portal body (or chamber) and this is connected via a thin tube inserted into one of the body’s veins. A special needle is used to get into the chamber which can then be attached to a drip for injections, drips or blood tests.

You may be able to choose the type of device you have, however, your choice will depend on the type of therapy you are going to have and your physical condition. Sometimes a choice isn’t possible.

More information about skin-tunnelled catheters, PICCs and implanted ports can be found in another booklet in the series, Central venous access devices.

Your doctor or nurse will explain your personal drug treatment to you. If you want more details or have any questions, please ask the staff caring for you.

Will having chemotherapy hurt?

Usually, chemotherapy is not generally more painful than any other injection or blood test. However, occasionally veins become hardened or sore. Please tell your chemotherapy nurse or doctor if this happens, so that they can avoid the sore area.

Some drugs can cause damage if they leak out of the vein while they are being injected. If you feel any stinging, ‘burning’ or pain when you are receiving the drug, tell your nurse or doctor straight away. If your arm or hand where the cannula was sited or the area around the catheter or port is sore, painful or you notice any swelling following the injection, please contact your chemotherapy nurse or doctor.


How long does it take to give

intravenous chemotherapy?

Depending on the chemotherapy drug or combination of drugs, each cycle lasts from a few hours to a few days.

Your doctor may recommend that your chemotherapy is given continuously at a lower dose, over weeks or months. This keeps a steady level of the drug in your bloodstream. You will receive the drug from a small infusion pump while you are at home. This is called ambulatory chemotherapy.

What is intrathecal chemotherapy?

For some types of cancer, for example, lymphomas and leukaemias, cancer cells can pass into the cerebrospinal fluid (CSF) which surrounds the brain and spinal cord. Your doctor may prescribe intrathecal chemotherapy. This means that anti-cancer drugs will be given through a needle into the space around the spinal cord in your back. This procedure is called a lumbar puncture. Injecting chemotherapy into the spinal fluid, can destroy any cancer cells that may be there and prevent cancer cells growing.

Where will I have my

chemotherapy treatment?

Most patients receive their chemotherapy as outpatients or day patients, visiting the hospital on the day of treatment. Your length of stay in hospital will depend upon the type of tests, assessment, chemotherapy preparation and treatment you need. If you are a day patient, you are likely to be at the hospital between four and six hours, sometimes longer if the treatment is complex.


Before you are given your chemotherapy, you will usually have blood tests and see the doctor. As you may have to wait while your chemotherapy drugs are being prepared, you may want to bring someone with you. Or you could bring a book to read or something to occupy you while you wait.

A step-by-step guide to having chemotherapy

Your tests and assessment

When you arrive on the day unit or ward, you will:

• Have a blood test – to check your blood count is satisfactory before you receive your

• See the doctor or nurse

• to check you are well enough to be given chemotherapy

• to check your chemotherapy prescription

Chemotherapy preparation and treatment

• Your chemotherapy will be prepared by pharmacy

• Your chemotherapy treatment will be given

• You will be given drugs to take home (if appropriate)

• You will be given your next appointment.

Sometimes you might need to stay in hospital overnight when treatment is first started or if several drugs and fluid infusions are to be given. In these circumstances, a 24 – 48 hour hospital stay is usually all that is needed.

There are special treatments which require longer admissions and, if necessary, they will be explained to you.


If your chemotherapy is given by continuous infusion at home, you will be asked to attend hospital for regular check-ups every few weeks.

Can I still take other medicines while

I am having chemotherapy?

Tell your doctor about any other medicines you are taking. Some drugs may interfere with your treatment.

If you are admitted to hospital, please bring all your current

medicines with you. Show them to the doctor or ward nurse so they know what you are taking.

Please ask your hospital doctor before taking any new medicines.

Will chemotherapy af fect

my every day activities?

Many people continue with their usual activities while having chemotherapy, for example working between injections or cycles of tablets. However, most people do find that they are more tired than normal for the first few days after treatment. You may need to take life more slowly, working part-time or cutting down on social activities. Take care not to overtire yourself, get enough rest and accept offers of help with everyday tasks.

The drugs, among other things, may cause you to feel a little ‘down’. It’s quite normal for this to happen at various times during your treatment. If you’d like to chat about this, contact your nurse or doctor or talk it over at your next appointment.


What if I have planned a holiday?

Generally most chemotherapy protocols can be adapted to fit in with holidays or other special occasions. Please tell your doctor in advance so your treatment can be planned around your arrangements. Also your doctor can give you any specific advice, for example about vaccinations.

You must take care of your skin when you are exposed to the sun. Your skin will be more sensitive and may burn easily (see page 36).

Can I have a drink?

Yes, it will usually be all right for you to have a small amount of alcohol, if you feel like it. There are one or two anti-cancer drugs which may interact with alcohol but you will be told about these.

Some people find that alcohol tastes unpleasant during chemotherapy treatment. Avoid drinking alcohol if you feel nauseous, it may make you feel worse.

Are there any side ef fects or complications?

Yes, but these will depend on the type of chemotherapy you are given. Side effects are the secondary effects of treatment and can be acute or late. Acute (immediate) side effects occur during and immediately after treatment and late (delayed) side effects develop after treatment has been going on for some time and may continue, at least for a while, after treatment is finished.

Chemotherapy drugs damage fast growing cells. As well as destroying cancer cells, they also cause damage to normal cells. It is this damage to normal cells that may cause side effects.Everyone reacts differently to chemotherapy and some people may have no side effects at all. The side effects you may experience with your


chemotherapy protocol will be discussed with you. For example, not all chemotherapy drugs cause sickness or hair loss, so do check what is relevant for you.

We can offer help for most side effects, so please tell your doctor or nurse if you feel any different from normal. We want to maintain your confidence and well being as much as possible during treatment. Remember, most of the side effects of chemotherapy are temporary and will disappear after your treatment has finished.

There are some side effects that need to be treated quickly and it is important that you do not wait until the next morning or after the weekend. If you are unsure as to whether your symptoms need urgent treatment, contact the hospital or GP for telephone advice.

You must contact your hospital team or GP immediately if you develop any of the following symptoms:

• a temperature of 380C /1000F or higher


• shivering episodes

• flu-like symptoms }signs of infection

• gum/nose bleeds or unusual bleeding (if bleeding doesn’t stop after 10 minutes of pressure)

• mouth ulcers that stop you eating or drinking

• vomiting (that continues in spite of taking anti-sickness medication)

• diarrhoea (four or more bowel movements than usual or diarrhoea at night)

• difficulty with breathing

It is important that you tell your hospital doctor if you suffer from any side effects, or anything else unpleasant that may have happened to you since your last visit. Your doctor can help you by giving you medication to reduce or stop these side effects from happening in the future.


Some more common effects which occur with several drugs are discussed here.

Your blood

Blood cells are made in the bone marrow, the spongy tissue found inside the hollow bones of the hips, legs and arms. Your bone marrow makes red blood cells, white blood cells and platelets.

Chemotherapy temporarily reduces the rate at which blood cells are produced in your bone marrow. A blood test will be taken at the beginning of therapy and before each course of treatment. This is to make sure that your ‘blood count’ is satisfactory before you have

your chemotherapy. Your doctor may also request a ‘blood count’ between treatments. The main effects of chemotherapy on your blood cells are:

• Infection

• Anaemia

• Bruising or bleeding

Infection

There are many types of white blood cells which make up the total white cell count. Their main function is to help your body to fight infection. If your white cell count is low (usually 7 – 14 days after the chemotherapy), you may become prone to infections and take longer to recover from them. In general, these arise from bacteria within our own bodies, and it is not necessary to avoid crowded places or isolate yourself from others. However, we advise you to keep away from people with serious infections, for example, chicken pox.

It is important to keep good personal hygiene. This includes taking daily baths or showers and washing clothes and bed linen regularly. Looking after your mouth (see page 32) will help prevent an infection from developing. Take care to wash your hands well when preparing food and before meals.


During your treatment try to reduce your risk of developing an infection, for example take care not to graze or cut your skin when gardening, shaving or preparing food. If you do, clean the area with warm water and soap and cover it with a sterile dressing, for

example an Elastoplast.

Tell your doctor or nurse if you develop a rash or diarrhoea, as both of these symptoms can be a sign of infection.

Your doctor may prescribe a course of antibiotics to prevent infection during your treatment. Another option is to give you a course of injections of growth factors, which are proteins that stimulate the production of blood cells. The commonly given growth factor to boost white cells is G-CSF.

The signs of infection may be a high temperature, shivering or flu-like symptoms or other signs of infection, such as a sore throat or cough. If you feel unwell at any time or have a temperature (38°C /100°F or higher) you should contact the hospital immediately as you may need to be admitted for intravenous antibiotics.

If you are on an intensive chemotherapy regimen, you may be given additional advice about diet. You may be advised to avoid certain foods that have been linked with food poisoning in the past, for example, soft cheese and lightly cooked eggs.

Possible side effect

Symptoms include:

What you should do

Infection(due to low white blood cells)

• a high temperature

• shivering or flu-like symptoms

• other signs of infection, such as a sore throat or cough

• rash

• diarrhoea

• Check your temperature if you feel unwell.

• Avoid grazing or cutting your skin.

Contact the hospital immediately (see page 54 for contact details) if you feel unwell at any time or have a temperature (38°C /100°F or higher).

When symptoms may occur

Usually 7-14 days after chemotherapy.


Anaemia

The red blood cells contain a protein called haemoglobin (Hb), which carries oxygen around the body. If your haemoglobin is low, you may become anaemic and begin to feel very tired and you may look pale. Anaemia may lead to shortness of breath when you exert yourself more than usual, such as when climbing stairs or doing housework.

If during your treatment you begin to feel more tired than normal or become breathless, tell your doctor. Eating a diet rich in iron, for example liver, red meat, fish, eggs and green leafy vegetables, may help to keep your haemoglobin up to its usual level.

If your haemoglobin is very low, you may need to be admitted for

the day, or overnight, to receive a blood transfusion. Another way of treating anaemia is to stimulate the body to produce more red blood cells. You may be given erythropoietin or EPO, which is a naturally occurring growth factor, produced by the kidneys. It stimulates the bone marrow to produce red blood cells.

Possible side effect

Symptoms include:

What you should do

Anaemia (low red blood cells / haemoglobin)

• tiredness

• shortness of breath

• Eat a diet rich in iron

Contact your hospital urgently (see page 54 for contact details) if you feel very unwell.

When symptoms may occur

During your course of chemotherapy.


Bruising or bleeding

Platelets help your blood to clot and prevent you from bleeding and bruising. Most types of chemotherapy do not normally affect the platelets in any significant way. However, with some treatments you may notice that you bruise more easily or that you have a tendency to bleed from your nose or gums. Rarely, small groups of red-purple spots may appear on your skin. All these could be signs of a low platelet count and you should contact your hospital doctor urgently.

Don’t take drugs which could affect your platelets, such as aspirin. Ask your doctor if you’re not sure what to avoid. Use a soft toothbrush and an electric razor to prevent damage to your gums and skin. Take care not to cut yourself when using knives and wear thick gloves when gardening. Also take extra care if you are playing sports.

You may need to come into hospital for a platelet transfusion (which is like a blood transfusion but all the red cells and white cells have been removed). Your platelet count can also be corrected by making the rest period between your courses of drugs longer, or by adjusting the doses of the drugs.

Possible side effect

Symptoms include:

What you should do

Bruising or bleeding

(due to low platelet count)

• gum/nose bleed

• really small groups of red-purple spots may appear on your skin

• Don’t take drugs such as aspirin

• Use a soft toothbrush and an electric razor to prevent

damage to your gums and skin

• Take care not to cut yourself

Contact your hospital urgently (see page 54 for contact details) if you have bruising or bleeding or groups of red-purple spots appear on your skin.

When symptoms may occur

During your course of chemotherapy.


Your digestiv e system

Some chemotherapy drugs can affect the lining of the digestive system and may cause the following problems:

• Sore mouth

• Taste changes

• Nausea and vomiting

• Changes in appetite

• Diarrhoea or constipation

Sore mouth

During chemotherapy the lining of your mouth may become sore

and prone to infection. This usually happens around 7-10 days after chemotherapy. It’s important that you keep your mouth clean and healthy and the following suggestions may help:

• Drink plenty of fluids, to keep your mouth moist and fresh.

• Use a mouthwash regularly. Ask your doctor, nurse or oral hygienist which one is best.

• Clean your teeth regularly using a fluoride toothpaste and a

soft toothbrush. If someone needs to clean your teeth for you,

they may find a child’s toothbrush easier to use.

• Clean your dentures after meals as well as at night.

• Keep your lips moist using a lip salve available from a chemist. Tell your doctor or nurse if your mouth becomes sore. It may be

possible to prescribe some tablets to prevent this in future. If you need further advice, ask to see an oral hygienist.

During chemotherapy, you may be more prone to infection and bleeding. Always consult your doctor before having any dental work done. Your blood count may need to be checked before the dentist can decide whether to proceed with dental treatment or not.


Possible side effect

Symptoms include:

What you should do

Sore mouth

• dry mouth and tongue

• sore mouth or tongue

• bleeding from gums, mouth or tongue

• Drink plenty of fluids

• Use a mouth wash regularly

• Clean your teeth regularly

• Keep your lips moist

Contact the GP or hospital immediately (see page 54 for contact details) if you are unable to eat or drink

because of mouth ulcers.

When symptoms may occur

7-14 days after chemotherapy.

Taste changes

Some people experience a change in their sense of taste or smell.

You may find that food may taste more salty, bitter or metallic. This

is only temporary. Normal taste and smell usually returns two or three months after the end of treatment. If an unpleasant taste

occurs during an injection, it can be disguised by a strong-flavoured sweet. Occasionally, some people may experience food cravings.

All these things which can affect your mouth, and appetite, are covered in more detail in the booklet Eating well when you have cancer in this series.

Possible side effect

Symptoms include:

What you should do

Taste changes

• changes in the way food or drink taste

• Suck a strong flavoured sweet if you have an unpleasant taste

during an injection

When symptoms may occur

During your course of chemotherapy.


Nausea and vomiting

Nausea and vomiting aren’t side effects of every chemotherapy drug although many people believe they are. Some drugs or protocols cause a greater reaction than others. Also everyone is individual – a similar drug combination may cause nausea in one person but not in another.

If you do feel nauseous or even vomit following your treatment, there are many anti-sickness (anti-emetic) drugs to help overcome this problem. These come as tablets, injections or suppositories. You will be given anti-sickness injections before the chemotherapy and tablets to take home with you. You should take these regularly as prescribed, even if you are not feeling sick, as some anti-sickness drugs are better at preventing than stopping sickness. Some people find taking ginger helpful. Should you still have nausea or vomiting, please tell your doctor or nurse and you can be given different anti-

sickness drugs that may be more effective. If you experience vomiting at home then anti-sickness tablets may not be effective and you should ask your doctor for suppositories with your next course.

You may also find relaxation or other therapy helpful. Another booklet in this series, Coping with nausea and vomiting, gives advice on managing the effects of nausea and vomiting.

Possible side effect

Symptoms include:

What you should do

Nausea and vomiting

• feeling sick

(nausea)

• being sick

(vomiting)

• You should take anti-sickness tablets or suppositories regularly as prescribed

Contact your hospital (see page 54 for contact details) if you continue to have nausea or vomiting. You

can be given different

anti-sickness drugs that may be more effective.

When symptoms may occur

During your course of chemotherapy.


Changes in appetite

If you experience any taste changes or lose your appetite, you may not feel like drinking or eating. However, you should try to drink plenty of fluids, about 10 glasses or cups each day, and eat well.

Try sipping clear, cold fluids, such as water and soft drinks, slowly through a straw. Fizzy drinks like soda water and ginger ale are quite refreshing, as are lemon or herbal teas. Avoid coffee, which has a strong taste and may also make you more thirsty.

You may need to change your meal times and have small, frequent meals or snacks of whatever you fancy. Eat slowly and chew your

food well. After a meal, relax, in a sitting or slightly reclined position, instead of lying down.

Eat light meals on the day of your treatment. Avoid eating for one or two hours beforehand and afterwards.

Another booklet in this series gives advice on problems associated with eating, Eating well when you have cancer. If you’re worried at all about your diet, please ask to see the dietitian.

Possible side effect

Symptoms include:

What you should do

Changes in appetite

• you may not feel like drinking or eating

• Drink plenty of fluids

• Have small frequent meals or snacks

Ask to see the dietitian if you are worried about your diet.

When symptoms may occur

During your course of chemotherapy.

Diarrhoea or constipation

Diarrhoea or constipation may occur with a few drugs. They can often be managed by tablets, medicines or a change of diet. Please tell your doctor or nurse if you have any problems.


Possible side effect

Symptoms include:

What you should do

Diarrhoea or constipation

• frequent or loose bowel movements

• not be able to control bowel action

• irregular or hard bowel movement

• Drink plenty of fluids

Contact your GP or hospital immediately (see page 54 for contact details) if you

have diarrhoea (four or more bowel movements than usual or diarrhoea at night).

When symptoms may occur

During your course of chemotherapy.

Your skin

Some chemotherapy drugs may cause sore, dry hands and feet. This problem can be relieved with medication so please tell your doctor if it happens.

With some drugs, your nails may become darker than usual and they may develop ridges or white lines. These changes usually grow over a few months after the treatment has finished.

Certain drugs may discolour the skin causing dark lines along the veins or where there is friction, for example due to tight clothing. Others may cause a local red reaction at the injection site or along the vein. This fades a short time after treatment.

Any rash should always be reported to your doctor. Some drugs may cause patches of red skin, particularly on the palms of your hands and soles of your feet. The skin may become dry and cracked. Using a good hand cream may help to prevent this.

During treatment, and for several months afterwards, your skin may be more sensitive to the sun and you may burn more easily. A moisturiser, such as aqueous cream, will help prevent dryness.


Try to stay in the shade between 10am and 2pm, and wear a wide brimmed hat, sunglasses that block out 100% of ultraviolet (UV) rays, and a T-shirt or other loose clothing.

Whenever you spend any length of time in the sun, apply a sunscreen with an SPF (sun protection factor) of at least 15 or more that blocks both UVB and UVA light. Put it on at least half an hour before exposure to sun. Remember vulnerable areas such as your ears, neck, back of the hands, and feet.

After your treatment has finished, you should protect your skin from extremes of temperature and continue using sunscreen (factor 15 or above).

Possible side effect

Symptoms include:

What you should do

Skin changes

• sore, dry hands and feet

• nails become darker than usual

• nails may develop ridges and white lines

• Use a moisturiser, such as aqueous cream on dry skin

• Protect your skin in the sun

When symptoms may occur

During your course of chemotherapy.

Your hair

Hair loss (alopecia) is a common side effect of chemotherapy. Not all drugs cause hair loss and some drugs only cause thinning of the hair or cause it to become brittle.

Hair loss can be very distressing, however it is always temporary and your hair will grow again when treatment finishes. Occasionally, hair will start to grow back before the end of chemotherapy. Sometimes, hair may grow back a different colour or texture.

Hair loss does not always happen straight away and usually starts within a few weeks of beginning treatment. Sometimes it starts within a few days. It can occur on all parts of the body, including the head, face, arms and legs, underarms, and pubic area. If you lose


hair around your eyes or in your nose, you may experience a runny nose and weepy eyes because of this.

‘Cold cap’

For some types of chemotherapy, cooling the scalp with a ‘cold cap’

as the drug is given can prevent hair loss. This works by reducing the blood flow to the scalp so that less of the drug reaches the hair follicles on your head. However, the cold cap doesn’t work for everyone. It only blocks certain drugs and isn’t suitable to use with all types of cancer. Your doctor or nurse will be able to tell you if this

is appropriate in your case. If you have a cold cap, you will need to allow extra time at the hospital for your treatment.

Wigs, available on the NHS and privately, can be obtained in advance

if you are likely to lose your hair.

Chemotherapy can cause your hair to become dry and brittle, so take good care of it. Use a neutral pH shampoo and conditioner (baby shampoo is too alkaline). Cut down on the number of times you wash your hair each week.

Use a wide toothed comb to avoid pulling at your hair and hair roots. Avoid harsh chemicals, such as hair dyes and perms, and excessive heat from heated rollers and hair dryers.

More details on how to look after your hair are found in Hair care and hair loss in this series.

Possible side effect

Symptoms include:

What you should do

Hair loss

• total hair loss or

• thinning of hair or

• brittle hair

• Use a neutral pH shampoo and conditioner

• Cut down on the number of times you wash your hair each week

• Order a wig in advance if you are likely to lose you hair

• Avoid harsh chemicals, such as hair dyes and perms

When symptoms may occur

Within a few weeks of beginning chemotherapy.


Your fertility

Some chemotherapy drugs can damage the ovary or testis, leading

to an increased risk of infertility (inability to have a child) and also, in women, early menopause. If this is an important issue for you, make sure you discuss it fully with your doctor before treatment starts.

Chemotherapy may affect sexual organs or functions in various ways. You may experience changes in your desires or desired level of sexual activity, or you may notice no difference. Loss of libido (sex drive) is not uncommon in both women and men. However, chemotherapy in itself doesn’t usually affect sexual performance or cause impotence.

The stress of your illness or the treatment schedule may make you feel more tired than usual. If fatigue is a problem you may want to set aside time for physical intimacy after a period of rest.

Although your sexual needs and desires are highly individual, the following advice may be helpful:

• Try to find out as much as possible about how your treatment may affect you

• Share your worries and feelings with people who care for you

Feel free to discuss any concerns you may have with your doctor or nurse. Even if they are unable to help you, they can refer you to someone who can.

For women

Chemotherapy may affect your ability to conceive a child which may be temporary or permanent, depending on your age and your treatment. If you are concerned about this you may want to discuss it with your doctor before starting treatment.

Women having certain chemotherapy protocols may notice changes

in their menstrual cycle. If you are still having periods then it is quite possible that these will gradually stop while you are on chemotherapy. This is less likely if you are in your 20’s or 30’s. If you are in your 40’s, your periods may not return and menopausal symptoms may begin.


Hormonal changes may cause hot flushes and vaginal dryness. If you suffer from any menopausal symptoms, talk to your doctor who may prescribe something to help relieve them.

If you are concerned about preserving your fertility, your specialist cancer doctor may want to refer you to a fertility clinic where you can discuss what options may be available to you. However, not all of the following options will be suitable for every woman. The options include freezing fertilised or unfertilised eggs, or ovarian tissue (cryopreservation).

• Freezing embryos (In Vitro Fertilisation or IVF) – collecting and freezing embryos for later implantation.

• Freezing unfertilised eggs (oocytes) – a procedure that may be considered by women who do not currently have a partner and do not wish to use a sperm donor. This is a fairly new and experimental technique.

• Freezing ovarian tissue – which contains hundreds of immature eggs that could potentially be saved and used to start a future pregnancy. This is still at a very early and experimental stage.

• Drugs to protect the ovaries. There is some evidence that drugs which induce a temporary menopause, for example, Zoladex, may protect the ovaries during treatment from long term chemotherapy damage. This approach is experimental.

Pregnancy

It may be possible to become pregnant during the time you are having chemotherapy, but it isn’t advisable to do so. Some chemotherapy drugs can damage the DNA development of a foetus. During treatment and for about one year afterwards, sperm and eggs may not be formed normally, if they are produced at all.

You or your partner should use effective contraception, during treatment, and for one year afterwards, because of the risk of damage to the unborn child.

Your doctor will be happy to discuss this further with you.


For men

Some chemotherapy drugs can damage the testis, leading to an increased risk of infertility. Although sterility (failure of sperm production) isn’t associated with many drugs, chemotherapy may reduce the number of sperm or their motility (movement). After treatment, some men remain infertile while in others, the sperm count returns to normal.

If sterility is likely to be a permanent side effect, you may be offered the opportunity to bank sperm before starting treatment (sperm is frozen for artificial insemination at a future date). Before sperm banking takes place, you will be asked to have a blood test for Human Immunodeficiency Virus (HIV) antibodies, Hepatitis B and Hepatitis C. This is routine practice to ensure that healthy sperm are banked.

During treatment and for about one year afterwards, it isn’t advisable for you to father a child because sperm may not be formed normally. You or your partner should use effective contraception.

Possible side effect

Symptoms include:

What you should do

Changes in your fertility

• early menopause

(for women)

• inability to conceive a child (men and women)

• some drugs can damage the DNA development of a foetus

Men can consider

• Sperm banking (if appropriate)

Women can consider

• Freezing embryos

• Freezing unfertilised eggs

(oocytes)

• Freezing ovarian tissue

• Drugs to protect the ovaries

Men and women

• Use effective contraception

When symptoms may occur

During and following treatment

Other effects

Some chemotherapy drugs may, more rarely, cause the following effects. Your doctor will tell you if any of your chemotherapy drugs are like to cause the following effects.


Eyes

Your eyes may become dry, irritable or weepy (conjunctivitis). Please mention this to your doctor or nurse if you get any of these symptoms so that you can be given advice on how to relieve them.

Hearing

Some chemotherapy drugs can cause tinnitus (a continual buzzing noise in the ears) or high frequency hearing loss. Tell your doctor if you are worried about changes in your hearing.

The nervous system

Some chemotherapy drugs can cause problems with the nerves in the body. This is called peripheral neuropathy. It can cause sensations like tingling, burning, numbness or pins and needles in the hands and/or the feet. Tell your doctor if you get any of these sensations, so they can be monitored. Most of the time, these symptoms will get better after your treatment ends, although it may take some time.

If the symptoms become severe, the nerves could be damaged permanently and your chemotherapy drugs may be changed.

Changes in lung function

Some chemotherapy drugs can affect your lung tissue. Occasionally this may be serious and need special treatment. You should tell your doctor if you notice any cough or breathlessness.

Damage to the heart muscle

This is very rare but can occasionally happen with prolonged usage of some chemotherapy drugs, especially doxorubicin and epirubicin. You should inform your doctor if you have had any pre-existing heart problems and he/she may arrange for you to have a test to see how well your heart is working before you start treatment, if this is likely to be a concern. You should tell your doctor if you notice chest pain or breathlessness.


The bladder

Some drugs may cause discolouration of your urine after chemotherapy. For example, your urine may turn pink or red up to 24 hours following each treatment. Your chemotherapy nurse will warn you if this is likely to happen. If you think you notice blood in your urine, you should report this to your doctor.

Rarely, a drug can cause irritation to the bladder (cystitis) since it is excreted in the urine. You should drink about an extra half a litre of fluid in the 24 hours after each injection.

Please report any other effects to your doctor or chemotherapy nurse.

If there’s anything which concerns you or is unusual for you, contact your hospital for advice. The sooner you do, the sooner we can put your mind at rest, or take appropriate action. If you don’t, there could be a delay in your treatment.

How will I feel during my

chemotherapy?

The fact that you need to have chemotherapy, and the effect it has on your life, can prompt a range of feelings. Fear, anxiety and depression are common to many people with cancer and are entirely normal. This may be in addition to how you feel physically.

Emotional wellbeing

Some people find it helps to gather information about their disease and treatment because this lessens the fear of the unknown. Find out as much as you want to know and don’t be afraid to ask questions. Your emotional wellbeing is as important as your physical health.


Loss of concentration may be a side effect of chemotherapy. This can affect your ability to listen and remember things which are explained at your treatment visits. Don’t feel embarrassed to ask for information to be repeated as often as you need it. You may find it

helpful to bring a friend, partner or relative to hospital visits, and to make a note of any questions you have beforehand. The doctors and nurses caring for you will be happy for you to do this. There is a blank section on page 53 for you to make notes or write down questions.

Talking with an understanding friend, relative, another patient or one of the organisations listed on page 50 may be helpful.

Many people don’t understand about cancer or its treatment and may avoid you because they’re not sure what to say or how to help. Try to be open in talking with others about your illness, treatment, needs and feelings.

You might like to try new methods to help you cope with treatment and its side effects, such as meditation, relaxation exercises, distraction, visualisation (imagery) or hypnosis. You may want to ask what is available within the hospital or locally in the community.

Remember everyone needs some support during difficult times. Please don’t hesitate to ask for help from your doctor or chemotherapy nurse, during or after your treatment. They are keen to make sure you get the support you need.

Fatigue

During your chemotherapy you may start to feel tired and listless.

This may be general fatigue or it may be that you become tired more easily after normal activities. This is quite normal and usually occurs with all types of chemotherapy.

Once you know what makes you more tired and when this happens, you can plan ahead. Try to plan your day so that light activities are spaced between more energetic activities. Do get enough rest and only do what you feel you can cope with.


People will often be willing to lend their support. If you get tired

easily, limit your activities and do only the things that mean the most to you. Ask your family and friends to help with household chores, cooking and so on. Work part-time or see if you can work more

flexible hours. Conserve your energy for the important events in your life.

Tiredness can also be a sign of anaemia, so do tell the nurse or doctor if you are worried about how you feel.

What help is available during my treatment?

Some people may experience problems as a result of their cancer and / or treatment that have an effect on different areas of their life. There is a wide range of services available to help you recover and lead an active and productive life. Some services can help you with physical difficulties, for example, physiotherapists and occupational

therapists. They may be able to teach you new ways of doing certain activities or help you achieve and maintain independence in other areas of your daily life. If you are finding it difficult to eat well, dietitians can provide advice whether it is during or after treatment.

Other services may be able to help you cope with social and emotional worries, for example social workers. They are experienced in working with people who have to adjust to change or crisis in their lives. A social worker can discuss with you any help you may need at home and give you information and advice on welfare benefits and coping with financial difficulties.

Remember everyone needs some support during difficult times. Please don’t hesitate to ask for help from your doctor or chemotherapy nurse, during or after you treatment. They are keen to make sure you get the support you need and will refer you on to the health care professional best able to help you.


What happens when chemotherapy

treatment has finished?

Once your chemotherapy treatment has finished, most side effects gradually disappear. Everyone is an individual and will recover in their own time. You may find that it takes a while for your energy levels to recover. You may also find that it will take some time for your emotions to settle down. As well as feeling relieved that your chemotherapy has finished, you may miss the close support of the hospital you had during treatment. You may find the booklet After Treatment in this series helpful.

You will be given an appointment for a follow-up check. Ask whom you should contact if you have any problems or concerns before your appointment.


Glossary

These are some of the terms you may come across during your chemotherapy treatment.

TermDefinition

Adjuvant therapy Treatment given in addition to the initial therapy.

Ambulatory chemotherapy Chemotherapy given through a small infusion pump while you are at home.

Anaemia Having too few red blood cells, which may cause symptoms including tiredness, weakness and shortness of breath.

Benign tumour A tumour or growth that is not cancerous.

Blood Count The number of three different kinds of blood cells in the body. These are white blood cells, red blood cells and platelets.

Cannula A small tube which is put into a vein in the arm or the back of the hand through which drugs are given.

Chemoradiation Chemotherapy combined with radiotherapy.

Chemotherapy Treatment with drugs which destroy cancer cells.

Clinical oncologist A cancer specialist who treats cancer with radiotherapy treatments (high energy x-rays). Most clinical oncologists will also prescribe

chemotherapy (anti-cancer drugs) and hormone therapies.


Clinical trial Research into the possible benefits and drawbacks of treating cancers.

Combination chemotherapy Several different drugs given together. Consent form A written record that you have agreed to the planned treatment.

Haematologist A specialist doctor who diagnoses and treats blood disorders and blood related cancers.

Implanted port An implanted port is a device, which is inserted under the skin into your body.

It is used to give fluids and drugs, and it can also be used to take blood samples from it.

Intrathecal chemotherapy Chemotherapy drugs given through a needle into the spinal fluid around the spinal cord in the back.

Local treatment Treatment that only affects a defined part of the body.

Malignant tumour A tumour or growth that is made up of cancer cells.

Metastases or ‘secondaries’ The spread of cancer cells to other parts of the body.

Neo-adjuvant therapy Treatment given before surgery or radiotherapy to shrink the tumour.

Palliative chemotherapy Chemotherapy given to help relieve symptoms.

Pathologist A specialist doctor who examines body tissues and organs under the microscope.


Peripheral neuropathy Sensations like tingling, burning, numbness or pins and needles in the hands and/or the feet.

PICC (a peripherally inserted A PICC is inserted into a vein in the central catheter) arm, at or above the bend in the elbow. It is moved up into the large vein leading to the heart. It is used to give fluids and drugs, and it can also be used to take blood samples from it.

Prognosis The predicted outcome of a disease or the life expectancy.

Protocol Plan of treatment.

Radiologist A specialist doctor in the use of x-rays and other imaging to diagnose and treat disease.

Skin-tunnelled catheter A fine tube which is inserted through (‘Hickman line’) the chest into a large vein leading to the heart. It is used to give fluids and drugs, and it can also be used to take blood samples from it.

Specialist nurse Provides information and support. Systemic treatment Treatment that affects the whole body.

Chemotherapy

Websites

UK National electronic library for health

http://www.nelh.nhs.uk

National UK health information site – covers all aspects of health, illness and treatments.

National Cancer Institute (USA)

http://www.nci.nih.gov/

Provides comprehensive information on cancer and its treatments.

(Please note that not all the information will necessarily relate to treatment in the UK.)

American Cancer Society

http://www.cancer.org/

American, gives detailed information on specific cancers and coping with cancer.

Chemotherapy


Further reading

Cancer at your fingertips (3rd Edition) (2001) Val Speechley and

Maxine Rosenfield. Class Publishing. ISBN 1859590365

Answers people’s most commonly asked questions about cancer. Discusses concerns about causes of cancer, treatment options and ways of living with cancer.

Taking control of cancer (2003) Beverley van der Molen. Class Publishing. ISBN 1859590981

Provides information for people diagnosed with cancer on getting information, treatment options, choices and self help.

 
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