This leaflet contains information you may find useful throughout your treatment. It also contains sections you may wish to use to make a note of any questions you want to ask, record any side effects you may experience and keep a track of your treatment.
This booklet has been developed in collaboration by the Wales Cancer Network and the All Wales Systemic Anti Cancer Therapy (SACT) Nursing Forum. Production was funded by an educational grant from the Association of British Pharmaceutical Industry (ABPI).
The word chemotherapy comes from two words – chemical and therapy. It is a drug treatment given to destroy cancer cells. The type of chemotherapy you receive will depend on the type of cancer you have.
Chemotherapy works by destroying cells which are growing and dividing. Cancer cells are constantly growing and dividing so they are more affected by the chemotherapy than healthy cells. However, chemotherapy can also damage some healthy cells.
Chemotherapy can be given in several different ways. The most usual methods are:
Depending on your treatment it can be given at various intervals ranging from daily, weekly, every two to three weeks or continuously.
Not all cancer drug treatments are chemotherapy. You will receive separate information about these if you are on such a treatment.
When we discuss chemotherapy with you, we will explain the risks and benefits. You can ask any questions you have about the treatment.
Chemotherapy can only be given with your agreement. We will ask you to sign a consent form. You can choose to stop treatment at any time. Please talk to your cancer team if you have any questions or worries.
Benefits of treatment
The benefits of chemotherapy treatment depend on the type of cancer you have and how advanced it is.
The aims of treatment may be:
Your doctor or nurse will discuss with you what the aim of your treatment is.
There are three main types of blood cells-white cells, red cells and platelets The number of all of these can be lowered by chemotherapy.
White blood cells defend you against infection. Most chemotherapy drugs lower your ability to fight infection. This is because they lower the number of white blood cells in your body
If your red cells become low you may look pale and feel very tired,
short of breath or have headaches. If you have any of these symptoms please tell your medical team, or the nurse looking after you, as you may need to have a blood transfusion.
These help prevent bleeding. If they are low you may notice bleeding from your nose or gums, you might bruise more easily or you might develop a pin prick rash, often seen on arms or legs.
If you notice any of those symptoms please let your specialist cancer team know as you may need a platelet transfusion. You will have regular blood tests whilst undergoing treatment; so that we can support you as much as possible. Please tell your hospital team if you do not wish to receive a transfusion.
Picking up an infection whilst your blood counts are low may be very serious. This does not mean that you need to hide away from other people, but it would be sensible to avoid close contact with those who have obvious signs of infection; such as flu, coughs, colds, chicken pox, stomach bugs etc.
Your healthcare team may advise you to monitor your temperature whilst you are on chemotherapy, and until your blood counts are fully recovered afterwards. Please follow the advice on your alert card about reporting any signs of infection and any high or low temperatures.
Washing your hands thoroughly and regularly, especially after going to the toilet or before preparing food, is also important. This will help to reduce the risk of infections; as will good food hygiene. (A separate leaflet may be provided on food preparation and storage.)
If you develop any of the following symptoms whilst on chemotherapy and during recovery please ring the telephone numbers provided on your Chemotherapy Alert Card:
Phone the number on your alert card straight away if you suspect an infection. Infection following chemotherapy can be fatal and any delay in receiving treatment may put your life at risk.
Sometimes chemotherapy drugs may cause changes to your normal bowel habits. You may experience diarrhoea or constipation, nausea (feeling sick) and vomiting (being sick). If any of these become a problem please do speak to your healthcare team as they are usually easy to resolve.
Some cancer treatments may cause constipation which is made worse if you are not drinking enough or not moving around as much as you normally would be. If you have not had a bowel movement for 2-3 days you should let your doctor or nurse know; unless this is normal for you.
The following advice may also be helpful:
If changing your diet does not restore a normal bowel pattern you may need to take laxatives to help.
Some cancer treatments may cause diarrhoea. If you get diarrhoea we may need to take a stool sample before we can give you any medicine to relieve it. This is to rule out an infection in your gut.
The following advice may also be helpful:
Some chemotherapy drugs are known to cause diarrhoea. If we know that this is going to apply to you, you will be given specific instructions and a supply of tablets to take if needed.
Not all chemotherapy drugs will make you feel sick, or be sick. If we use drugs that might cause sickness we will always give you anti-sickness medication before your chemotherapy and for a few days afterwards.
Improvements in anti-sickness drugs mean that many patients do not feel sick at all. If you still feel sick after chemotherapy please let your healthcare team know. There are many different types of anti-sickness drug we can use which may be more helpful for you.
If you are being sick and it does not get better with the anti-sickness medication you have been given, phone the number on your chemotherapy alert card for advice.
Some hospitals may also be able to offer services such as hypnotherapy and acupuncture to help manage any symptoms of nausea or vomiting. Speak to a member of your nursing team and they may be able to refer you.
The following advice may also be helpful:
Feeling tired is probably the most common side effect of chemotherapy. However fatigue is a more extreme version of this and is not usually helped by just having a good night’s sleep. It can affect your everyday life and make it hard to concentrate or do even the most simple of tasks. This is sometimes referred to as ‘chemo brain’ and is very common. Sometimes tiredness can be eased by having a blood transfusion if you are anaemic, or improving your food intake if your appetite has been poor. It is always worth speaking to your doctor or nurse to see if they can help you.
The following advice may also be helpful:
If you are extremely tired (for example sleeping more than half of the day and not having enough energy to even get washed or dressed) please contact the number on your chemotherapy alert card for advice.
Chemotherapy can cause mouth problems and cause your mouth to become more sensitive.
The side effects of chemotherapy can include:
The following guidance may be helpful:
During your cancer treatment you may lose your appetite because you feel sick, are too tired to eat or because chemotherapy can cause things to taste different. In this instance you could try the following:
If you find you have lost your appetite and you are concerned about weight loss please talk to your doctor or nurse who can offer you further advice. They may suggest you are seen by a dietician who can offer you nourishing drinks that can be used to replace small meals.
Alternatively you may find some medications, such as steroids, may give you a bigger appetite than usual. When on chemotherapy most dieticians recognise that you require extra calories to help fight off infections or the disease itself. They may not normally recommend a weight loss programme. However they may be able to talk to you about following a healthy eating plan to avoid further weight gain.
Ask your nurse about further information about leaflets available from your local dietician or from Macmillan Cancer Support.
Some chemotherapy drugs may cause hair loss. This varies from thinning to complete hair loss. Occasionally the treatments may also affect eyebrows, eyelashes, nasal hair, beard, moustache and body hair. Your hair will grow back after you have finished treatment. You may even notice some new growth during your treatment. Hair may grow back a slightly different colour and texture.
If your treatment causes hair loss we will tell you how much hair loss to expect. Hair loss usually starts 2 – 4 weeks after your first treatment. Occasionally it may be sooner, and for some people it will be later.
If your hair does not fall out, treatment can still make it dry and brittle. There are some simple steps you can take to help look after your hair:
Scalp cooling can be used for some chemotherapy treatments to prevent or minimise hair loss. If scalp cooling can be used with your treatment we will discuss this with you.
You should minimise exposure to the sun. Wear a hat and sunscreen if you go out in the sun. Use a mild moisturiser if your head becomes dry or tender
Please speak to your nurse if you would like information about the choice of head coverings and wigs.
Some chemotherapy drugs can make your skin more sensitive to the sun. If you are being prescribed one of these drugs we will tell you to take some special precautions. These include reducing the time you are in the sun, staying in the shade wherever possible, wearing a hat and using a high factor sun cream.
Some chemotherapy drugs which are given in a drip or by injection into a vein may damage the skin and surrounding area if they leak outside of your vein. This is known as extravasation. It is extremely rare but it is important that you tell us immediately if you notice any pain, swelling or burning at the site of the drip. If this occurs whilst the chemotherapy is being given, tell your nurse. If you notice pain, swelling or redness when you’re at home please contact us using the 24 hour helpline number on your alert card.
Risk of blood clots
Cancer can increase your risk of developing a blood clot (thrombosis), and having chemotherapy may increase this risk further. It is important to tell your doctor immediately if you have symptoms such as pain, redness and swelling in your leg or arm. If you develop any new or worsening symptoms of breathlessness or chest pain this may be caused by a blood clot – you should call 999.
Blood clots can be very serious. However, most clots can usually be successfully treated with drugs to thin the blood. Your doctor or nurse can give you more information.
Many patients being treated with chemotherapy will also be given steroid tablets. These may be used in several different ways:
The most commonly used steroid tablets are dexamethasone or prednisolone.
When taking these tablets you may notice:
If you are a diabetic please talk to us about how to manage your blood sugar levels when taking steroid tablets.
If you have severe problems with indigestion, mood swings or if you notice any of the signs of an increased blood sugar level you should contact the 24 hour helpline number for advice.
To reduce the possibility of side effects you will be given only a short course of steroid tablets (usually 3–5 days). If you are having steroid tablets for longer you will be given separate information about long term steroids. We advise that you should take steroids after food to reduce the risk of indigestion. Avoid taking steroids after 2pm to reduce the risk of difficulty in sleeping.
Small amounts of chemotherapy may be present in your body fluids (blood, urine and vomit) for several days after your treatment. Although the risk of harm is very low, it is important to protect others from contact with chemotherapy. We advise that you flush the toilet immediately after use and wash your hands thoroughly. You should wear rubber gloves if body fluids are spilled or handled.
Having chemotherapy treatment should not prevent you from having close contact with your family and friends. This includes kissing and cuddling.
During chemotherapy there may be times when side effects such as tiredness or sickness will reduce your sex drive. Remember that most side effects from chemotherapy that may affect your sex life will gradually wear off once your treatment is finished.
There is no medical reason to stop having sex at any time during your course of chemotherapy. It is perfectly safe, and the chemotherapy drugs themselves will have no long-term physical effects on your ability to have and enjoy sexual activity.
Cancer cannot be passed on to your partner during sex and it won't make the cancer worse.
We do recommend the use of a condom for all sexual activity for at least the first few days after chemotherapy. This should protect your partner from the possibility that there may be very small traces of chemotherapy in your body fluids.
It is important that you do not become pregnant or father a child during your course of chemotherapy treatment, or for at least twelve months after treatment. This is because chemotherapy can harm an unborn child. The effectiveness of the contraceptive pill can be reduced in people having chemotherapy so should not be relied upon as the only method of contraception.
Breastfeeding during chemotherapy is not advised as the drugs could be passed to a baby through breast milk.
Some chemotherapy treatment may make you infertile. This may be temporary or it may be permanent. It can help to talk through any concerns about this with your doctor or specialist nurse.
All patients receiving chemotherapy are at risk from flu.
Flu immunisation is recommended if you will be receiving chemotherapy during the autumn and winter. Ideally you should be vaccinated 7–10 days before your chemotherapy treatment starts. The immunisation may not be as effective if you have already started chemotherapy because your immune response may be lowered. This reduces your body’s ability to form the antibodies needed to protect you from flu.
If you are vaccinated during a course of chemotherapy, this should be done when your white cell count is at a normal level. You should avoid being vaccinated when your white cell count is low because you may develop a raised temperature. This could be confused with a fever, caused by infection, and could result in unnecessary hospital treatment. Please check with your specialist cancer team about when the best time is to have a flu vaccination.
The shingles vaccine is only given to people aged between 70 and 79 years. It is recommended for patients who are going to start chemotherapy but it must be given at least 2 weeks but ideally 4 weeks before starting treatment. It cannot be given after chemotherapy has started, or for at least 6 months after treatment, as it is a live vaccine. Please check with your cancer specialist team about whether you should have this vaccine
You should not have any live vaccines while you are having chemotherapy and for at least 6 months afterwards. Examples of live vaccines include:
Please check with your cancer specialist team before having any of these vaccines.
You should avoid close contact with children who have had the nasal flu vaccine for 2 weeks as this is a live vaccine.
Being told you have cancer and going through cancer treatment can be a very difficult and puzzling time. You will probably have many questions and may need extra help and support. You may have concerns about;
Please talk to your specialist nurse, doctor or key worker if you have any questions or concerns. They will be able to answer most of your questions and also tell you about the range of support services available in your area.
We have provided some useful phone numbers and websites for organisations which support cancer patients and their family/friends.
Macmillan Freephone Support Line, 0808 808 0000, Monday–Friday 9am-8pm
Tenovus Freephone Cancer Support Line, 0808 808 1010, 7 days a week 8am–8pm
Useful websites:
Cancer Research UK www.cancerresearch.org.uk
Healthtalkonline www.healthtalkonline.org (personal experiences of health and illness)
Macmillan Cancer Support www.macmillan.org.uk
Tenovus www.tenovus.com
This section is for you to show to your GP, dentist or any other Health Care Professional that you may come into contact with whilst you are undergoing chemotherapy treatment. It will give them guidance on who and when, to ask for advice; particularly if your blood counts are likely to be low. Please take this, along with your Chemotherapy Alert Card, to any hospital, GP or dental appointments. Thank you.
Risk of sepsis: As a result of their treatment this patient’s bone marrow may be suppressed and their immune system compromised. They are at increased risk of sepsis. If they present to you unwell, with signs and symptoms of an infection please contact their specialist team for advice and ensure immediate admission to hospital for assessment. Please ask to see their Chemotherapy Alert Card for contact details and a list of any symptoms that may be of particular concern.
Medication queries: Systemic anti cancer treatment should only be initiated by the specialist cancer team. Please note that systemic anti-cancer therapy can have significant interactions with other medication. If you have any queries regarding medication or any other treatment related issues please refer to the contact details at the front of this folder.
Vaccines: Live vaccines should be avoided whilst on chemotherapy treatment and for at least 6 months afterwards. Each specialist area will have its own vaccination protocol which would need to be adhered to.
Patients will, however, be advised to have the flu vaccine ideally prior to treatment or at a point in their treatment when their neutrophil count has recovered.
For advice regarding any vaccinations post bone marrow transplant please liaise with the individual transplant team.
Invasive procedures should be avoided unless essential; because of the risk of infection and bleeding due to a low blood count. Emergency dental care may be carried out at a local dental hospital; with platelet cover if required and prophylactic antibiotics.
Urgent dental work should be done, wherever possible, prior to starting chemotherapy. Patients are encouraged to have a routine check up before starting chemotherapy. Routine checkups can be carried out in between rounds of treatment; when the patients’ blood counts have recovered and before having further chemotherapy.
Depending on your role you may be involved in administering oral or subcutaneous chemotherapy, caring for the patient’s central line or handling bodily fluids. The following advice may be useful:
For advice on issues not covered by this brief guidance please contact the patient’s medical or nursing team using the contact number on the chemotherapy alert card, or the number at the front of this booklet. Thank you.