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General chemotherapy General information leaflet for patients receiving chemotherapy treatment Contents Page Introduction 2 What is chemotherapy? 2 How does chemotherapy work? 2 How can chemotherapy be given? 3 How often is chemotherapy given? 3 Can I eat and drink as normal? 3 Should I take my normal medicines? 4 Where will I have my chemotherapy? 4 Agreeing to have chemotherapy treatment 4 Benefits of treatment 5 What are the side effects of treatment? 5 The effect on your blood cells 6 The effect on your mouth 7 The effect on your appetite 8 Sickness 9 The effect on your bowels 9 Your hair 9 Pregnancy and fertility 10 Care in the sun 11 Tiredness and fatigue 11 Skin and tissue damage 11 Risk of blood clots 11 Side effects of steroid tablets 12 Other information 12 Flu vaccinations 12 Other vaccinations 13 Clinical trials 13 If you’re unwell at home when having chemotherapy 14 Admission to another hospital during your chemotherapy 15 Contact telephone numbers back cover Useful websites 1 General chemotherapy Introduction This leaflet gives general information for patients receiving chemotherapy treatment. It explains what chemotherapy is, how it works and how it is given. It tells you about the benefits and side effects of chemotherapy and other general information. The leaflet also tells you how to contact us if you are unwell and need immediate attention. Contact telephone numbers are included at the end of the leaflet. We have also listed some websites that you can look for further information. This leaflet gives general information. We will discuss your individual treatment with you in more detail. What is chemotherapy? Chemotherapy is taken 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. Your doctor from Velindre Cancer Centre will give you a detailed explanation. Chemotherapy can be used on its own or with surgery or radiotherapy. How does chemotherapy work? 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. 2 General chemotherapy How can chemotherapy be given? Chemotherapy can be given in several different ways. The most usual methods are: By injection into a vein using a drip By mouth as a tablet or liquid Via a small pump which delivers the chemotherapy through a fine tube called a PICC or Hickman line. The pump is carried in a small bag worn around the waist. How often is chemotherapy given? Depending on your treatment it can be given at various intervals ranging from daily, weekly, every two/three weeks or continuously. Your doctor will discuss how often your chemotherapy will be given. Can I eat and drink as normal? Yes, we would recommend a light meal before your chemotherapy treatment. Avoid large, heavy meals for the first day or two afterwards. You should drink plenty of fluids. It is best to avoid alcohol for a few days after each chemotherapy treatment. Your doctor will discuss with you if you need to avoid alcohol completely. Ensure that you eat food that has been prepared and stored to a high standard of hygiene. Avoid unpasteurised food, soft cheeses and pates. 3 General chemotherapy Should I take my normal medicines? Please tell your doctor which medicines you normally take. Unless they tell you otherwise you should continue to take your normal medicines. Where will I have my chemotherapy? Depending on your type of treatment it could be in one of the following places: in one of the day case treatment areas at Velindre Chemotherapy in-patient ward (as an inpatient) In an Outreach Clinic in your local hospital In your own home On the mobile chemotherapy unit You will usually have your treatment in the same place each time. However there may be times when we need to move your treatment to a different place. If this is to a different department within Velindre we may not always be able to tell you in advance. If we change the time of your treatment we will always ring you or send you a letter to tell you. If you have any queries about your treatment appointments please contact the booking team. Their telephone number and email address is on the yellow back cover. Agreeing to have chemotherapy treatment When chemotherapy is discussed 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. 4 General chemotherapy You can choose to stop treatment at any time. Please talk to your doctor or nurse if you have any worries. Benefits of treatment The benefits of chemotherapy depend on the type of cancer you have and how advanced it is. The aims include: To cure the cancer by destroying all of the cancer cells To reduce the chances of cancer coming back by destroying any cancer cells that are still in the body but are too small to detect To reduce the size of the cancer before surgery or radiotherapy To control the growth and spread of the cancer to relieve possible symptoms What are the possible side effects of chemotherapy? There are many possible side effects to chemotherapy treatment. These will depend on the type of chemotherapy you are prescribed. We will give you a separate information leaflet on your particular chemotherapy which will explain your treatment and side effects in more detail. This leaflet explains the general side effects that may be expected with most types of chemotherapy treatment. Please remember: You will not get all of the side effects mentioned below. 5 General chemotherapy Side effects are often predictable in terms of when they start, how long they last and how severe they will be. Side effects are almost always reversible and will go away after you finish your treatment. Side effects are usually quite manageable. There are many options to minimise or prevent them. The important thing to remember is that side effects which are reported early are much easier to treat. Most can be managed easily with expert advice. Please follow the information we give you about when to contact us for advice (see back inside page) as some side effects if not treated can become life threatening. The effect on your blood cells There are three main types of blood cells, these are: white blood cells red blood cells platelets The number of blood cells you have can be lowered by chemotherapy treatment. Therefore you will have regular blood tests. White cells: If these are lowered by your chemotherapy treatment, then your body’s ability to fight infections is reduced. One way that we can tell if you have an infection is a rise in your body temperature. If your temperature is 37.50C or above, or if you notice any signs of infection such as a sore throat, cough, cold or diarrhoea you should contact Velindre Cancer Centre immediately (see back inside page). A nurse will advise the best action to 6 General chemotherapy take. Be prepared to visit Velindre for a blood test if that is their advice. If your white blood cell count is too low we may need to delay your treatment. Red cells: These carry oxygen to all parts of the body. If these are reduced you may become tired and pale, this is known as anaemia. If your red cells are below the normal range you may need a blood transfusion. Platelets: These cells are needed to allow the blood to clot, for example if you have a cut. If your platelets are too low because of the chemotherapy you may notice that you bruise easily, have nose bleeds or that your gums bleed. If this happens you should phone Velindre Cancer Centre immediately (see back inside page). If your platelets are below the normal range you may need a platelet infusion or we may need to delay your treatment. The effect on your mouth Chemotherapy treatment can affect the cells that line the inside of your mouth. This can make your mouth red and sore and it is more likely to become infected. So it is important that you look after your mouth during your treatment. You should keep your mouth as clean as possible. Clean your teeth gently after each meal using fluoride toothpaste. Use toothpaste for sensitive teeth if you have sore gums. You should also gently brush your tongue if it is not too sore. If you wear dentures, you should brush them in the evening and after eating with liquid soap and water. They should be 7 General chemotherapy soaked overnight in water and you should use a sterilising solution daily to disinfect them. You should use sodium hypochlorite 1% (Milton). Dilute 1 teaspoon in half a tumbler of water. Soak plastic dentures for 3 minutes. Soak dentures with metal parts for 1 minute. Drink plenty of unsweetened fluids to help keep your mouth fresh and moist. You may also find it helpful to rinse your mouth with salt water (dissolve one level teaspoon in 500mls of warm water, rinse your mouth then spit out). If you do not like to use salt you can do this with fresh water. If your mouth becomes sore, you develop mouth ulcers or oral thrush you should contact Velindre Cancer Centre for advice (see back inside page). It is important to change your toothbrush at least every 3 months and after a mouth infection. If you haven’t recently had a dental check-up we would advise you to do this before starting chemotherapy if possible. If you need any dental treatment it is important that you discuss this with your hospital doctor before having any dental work carried out. The effect on your appetite Sometimes chemotherapy treatment can affect your appetite. As a result you may lose or gain weight. We have leaflets that tell you more about eating and drinking during your chemotherapy treatment. Please ask your nurse for more information. Your doctor or nurse can also refer you to the dietitian for further advice. 8 General chemotherapy Your sense of taste may alter. This will usually return to normal within two to three months of completing treatment. Sickness Chemotherapy treatment can sometimes cause nausea (feeling sick) or vomiting (being sick). Some chemotherapy treatments are more likely to cause sickness than others. However, vomiting is uncommon these days as we will give you anti-sickness medicines which are usually extremely effective. If you are sick more than once in 24 hours despite taking regular anti-sickness medicine then please contact Velindre Cancer Centre for advice (see back inside page). The effect on your bowels Some chemotherapy treatments can affect your bowels. Some can cause diarrhoea and some may cause constipation. Only a small number of chemotherapy drugs cause diarrhoea. If you are being prescribed one of these we will give you specific advice. However, if you experience either of these problems please tell your doctor or nurse as they can usually be treated with medicine or by changing what you eat. If you have four or more bowel movements in 24 hours above what is normal for you please contact Velindre Cancer Centre immediately (see back inside page). Your hair Some chemotherapy drugs may cause hair loss. This varies from thinning to complete hair loss. This is always temporary and your hair will grow back again when you 9 General chemotherapy finish your chemotherapy treatment. We will tell you how much hair loss to expect with your treatment. Scalp cooling may be used for some types of chemotherapy treatment to reduce hair loss. We have leaflets that tell you more about scalp cooling and coping with hair loss. This includes information about the HeadStrong service and wigs. Please ask your nurse if you would like a copy. Pregnancy and fertility There is no reason not to have sexual intercourse, but we recommend the use of a condom. 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 six months after treatment. This is because chemotherapy can harm an unborn child. 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. If you would like further advice about fertility or if you have any concerns about sex you can discuss this with your doctor. You can also contact the following Specialist Nurses: Christian Smith Nurse Clinician 029 2031 6991 Sarah Burton Macmillan Lead Gynae Specialist nurse 029 2061 5888 bleep 195 10 General chemotherapy Care in the sun 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. Tiredness and fatigue Chemotherapy can make you feel more tired than usual. It is important to listen to your body and rest if you need to, but carry out your normal activities if you feel able. Some people find it beneficial to take gentle exercise as well as taking rest. Skin and tissue damage Some chemotherapy drugs which are given in a drip or by injection 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 swelling, pain 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 immediately (telephone number on back inside page). 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 11 General chemotherapy you have symptoms such as pain, redness and swelling in your leg, or breathlessness and chest pain. 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. Side effects of steroid tablets Many patients being treated with chemotherapy will also be given steroid tablets. These are often given for a few days after chemotherapy to prevent sickness, or starting just before chemotherapy to prevent reactions to chemotherapy. The most commonly used steroid tablets are dexamethasone or prednisolone. When taking these tablets you may notice: A temporary increase in appetite Indigestion Mood swings, irritability and difficulty in sleeping Feeling much more thirsty and passing a larger amount of urine than usual. This may be a sign of an increase in your blood sugar levels which if left untreated could make you very drowsy, weak and unwell. If you are diabetic this may be a particular problem. 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 we have a separate leaflet that gives you 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. If you are a diabetic 12 General chemotherapy 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 Velindre cancer centre for advice. Other information 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. Therefore 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. If you would like to discuss this further then please ask your nurse. SPECIALIST ANTICANCER MEDICINES CAN ONLY BE PRESCRIBED BY SPECIALIST CANCER DOCTORS you cannot OBTAIN ANTICANCER MEDICINES FROM YOUR GENERAL PRACTITIONER (GP) Many anticancer medicines require specialist tests (i.e. blood tests, hormone tests etc). These tests are done by specialist doctors skilled in treating cancer. This is why anticancer medications can only be prescribed by specialist cancer doctors (oncologists). If you run out of your anticancer medicines, it is important that you contact your cancer doctor / specialist cancer nurse 13 General chemotherapy for advice. DO NOT GO TO YOUR GP TO GET FURTHER SUPPLY. Flu vaccinations 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. The flu vaccine would be best given the day of the clinic appointment, or following day. You will need to attend clinic, obtain your blood results, if they are normal, you will then be able to have the vaccine with your GP. 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. Shingles vaccine 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 6 months after treatment, as it is a live vaccine. 14 General chemotherapy Other vaccines You should not have any live vaccines while you are having chemotherapy and for 6 months afterwards. Examples of live vaccines include: MMR (the triple vaccine for measles, mumps and rubella) BCG Shingles Yellow fever You should avoid close contact with children who have had the nasal flu vaccine for 2 weeks. You should avoid close contact with anyone who has recently been given a live vaccine by mouth (such as polio). Vaccines are no longer given by mouth in the UK. Clinical trials Research into new ways of using chemotherapy and new chemotherapy drugs takes place at Velindre Cancer Centre. We may ask you to consider taking part in a clinical trial if there is one suitable to your type of cancer and treatment. Before you make your decision we will give you detailed information. Taking part in a clinical trial is voluntary. Your decision will not affect the standard of care you receive. If you are unwell at home when having chemotherapy If you feel unwell when you are at home whilst having chemotherapy and you think this is due to the chemotherapy you should contact us immediately. For example if you have any of the following symptoms: 15 General chemotherapy A temperature of 37.5°C or above Are sick more than once in 24 hours Have diarrhoea Unexplained bruising or bleeding Feeling generally unwell / have a chesty cough or problems passing urine Any pain, swelling or redness at the site of the drip where the chemotherapy was given You should phone Velindre Cancer Centre on 029 2061 5888 and say that you are a patient having chemotherapy and you are unwell. You will speak to a nurse and they will ask for the following information (these are found on your chemotherapy alert card): Your hospital number Which chemotherapy drugs you are having The nurse may give you advice over the telephone, may refer you to your GP or may ask you to come to Velindre. If you are asked to come in please bring an overnight bag with your medication, clothing and toiletries so that you can be admitted to a ward if required. Admission to another hospital during your chemotherapy treatment If you are admitted to hospital it is important that you tell them you are having chemotherapy treatment. You should show the nurse or doctor looking after you, your alert card. Ask them to let us know that you have been admitted. Our telephone number is on the back inside page. 16