Please also view a 20 minute film produced By the department about chemotherapy by Entering bit.ly/chemovideo into the search bar On your computer or device. Information for patients their families and carers Chemotherapy Derriford Hospital Derriford Road Plymouth PL6 8DH Tel: 0845 155 8155 Index What is Chemotherapy? 4 How is Chemotherapy Given? 5 Side Effects of Chemotherapy 9 Other Matters 19 Important: When to call the Hospital or GP 21 Which number do I call? 23 Who can I talk to for advice? 23 Further advice and useful websites 25 Further information regarding chemotherapy can be found by watching a short film produced by the department. Please enter: Bit.ly/chemovideo Into the search bar of your computer or device. 2 Chemotherapy information for patients, their families and carers This is an information booklet to help you and your family understand chemotherapy, its effects on your body and how you can help yourself. It will supplement the information given to you by your doctors, nurse specialist, ward nurses, and other staff you may meet. You will also be given an information sheet from Macmillan giving details of your specific chemotherapy regime and chemotherapy drugs. Contact numbers: Chemotherapy Unit: (Monday to Friday 9am to 5.00pm) 01752 763974 Birch Day Case Unit: (Monday to Friday 8.30am to 6.30pm) 01752 432674 Brent Ward: (overnight and weekends) 01752 792306 Bracken Ward: (overnight and weekends) 01752 432494 Oncology Outpatients: (Monday to Friday 9am to 5.00pm) 01752 763969 Emergencies: Information on what to do in the event of an emergency can be found on page 21 of this booklet. 3 What is chemotherapy? The word ‘chemotherapy’ means treatment with drugs. The word is used mostly to mean the treatment of cancer. Sometimes the drugs used to treat cancer are called cytotoxic drugs. The word cytotoxic means poisonous or toxic to the cells of the body. Your chemotherapy treatment will depend on the type of cancer you have. Different drugs work best on different cancers. Sometimes only one drug is required. Often more than one drug is used to make the treatment more effective. A single treatment may be given, or it may be repeated with a rest between each treatment. Sometimes chemotherapy is used with surgery and / or radiotherapy to treat certain types of cancer. Chemotherapy given soon after surgery is often referred to as adjuvant treatment. Similarly, if chemotherapy is given before surgery it is called neo-adjuvant treatment. How does chemotherapy work? The drug will be given as tablets or capsules, or injected into a vein, so that it can enter your bloodstream. Tablets or capsules dissolve in your gut and the drug passes through the gut wall into your bloodstream. The drug is carried around your body in the bloodstream to reach the cancer cells. The drug gets into the cancer cells and may damage their genetic material (DNA). This may prevent the cancer cells from growing and dividing in an uncontrolled way. However, cytotoxic drugs damage healthy cells as well, but the healthy cells are much more able to recover than the cancer cells. When healthy cells are affected, you 4 may get temporary side effects, such as feeling sick, losing your hair, or getting a sore mouth. Usually your chemotherapy is followed by a rest period e.g. chemotherapy on one day and then 20 days rest period (this is then referred to as a cycle of chemotherapy). The rest period is most often longer than the chemo period. This rest or break is important as it gives your body’s healthy cells time to recover from the unwanted effects of the treatment. This plan or regime of chemotherapy varies from cancer to cancer. Cycles of chemotherapy can be as short as a week or as long as six weeks. Your doctor and chemotherapy nurse will explain the details to you. How is chemotherapy given? The way chemotherapy is given will depend on the drug and the course of treatment. Chemotherapy can be given in the following ways: As an intravenous injection or drip This is the most common way of giving chemotherapy. These intravenous injections (IVs) may be given over a few minutes, or as drips - intravenous infusions over an hour or several hours. The type of IV will depend on your particular cancer and which drugs are most effective. As tablets or capsules You may be given tablets and / or capsules as part, or all of your treatment. The doctor, nurse and / or pharmacist will explain the medicines to you and suggest when to take them. If you have any questions about your medicines please ask one of the staff. 5 As a continuous infusion Sometimes it is useful to infuse a chemotherapy drug continuously. You will have a special tube put into one of your veins and then a small portable pump which you wear and pumps chemotherapy into the tube. See Central or PICC lines (in next section). Injected beneath the skin A few drugs may be given to you as an injection just beneath your skin (a subcutaneous injection) or into a muscle (an intramuscular injection). Injections and drips Will it hurt? One of our biggest concerns is not to hurt you. We appreciate that you are already upset by having cancer and that you may be feeling very vulnerable. We have specialist Chemotherapy Nursing Services running the Chemotherapy Unit and Birch Ward Day Unit, and experienced highly trained cancer nurses on Brent and Bracken Wards. Your Cancer Nurses have great experience and expertise in putting in patient’s needles (called cannulating). We always use the smallest possible size ‘needle’ (cannula) often a child size. Most of these cannulae are put in the veins on the back of your hand or the lower part of your forearm. Some patients, due to the nature of their treatment, will require Hickman Lines, or PICC lines, so that they can have continuous or multiple chemotherapies. 6 Hickman and PICC lines A Hickman line is a long thin tube put into the large vein above the heart. This tube then leads out to the surface of your body underneath the skin of your chest. The tube is left in place for several weeks or months while you need treatment. It needs twice-weekly flushing to prevent it becoming blocked. PICC stands for Peripherally Inserted Central Catheter. A PICC line is a long thin soft tube inserted into a large vein in the upper arm. This tube then leads into the bigger veins in your chest just above your heart. The PICC is kept in place by an adhesive pad and a clear plastic dressing. Like other central lines the PICC can be left in place for several weeks or months. It will need weekly flushing and dressings, which can be done by the District Nurse or the Practice Nurse at your local GP surgery. Alternatively, a relative or carer can be taught to change the dressing. If your Hickman or PICC line is not being used frequently, it will still require regular flushing. Your oncology nurses will advise you about this. Cannulation - how can I help myself? You may have noticed that when you are hot (in summer or after a hot bath), the veins in your hands are very big and prominent. Also, when you are cold, your hands and nails look pale and your veins have ‘disappeared’. This is your body’s normal way of maintaining its inner temperature. You can use this natural reaction to your advantage. When your veins are prominent they will be easier to cannulate. Therefore, on your way to the Unit and while 7 waiting for your chemotherapy appointment, try to keep yourself warm. You may not feel cold but an extra layer of clothing can help your hand veins dilate and be visible. Also in the cooler months please wear gloves, even indoors in the clinic. It will also help to drink plenty of fluids so that you are well hydrated. If despite these measures your veins are still small we may warm your hands using a bowl of hot water or a hot pack. Drips and breast patients Breast cancer patients who have had surgery are often told by their surgical team that we cannot use the veins on their surgery side. Please discuss this with your chemotherapy nurse. Will I have to stay in hospital? If your chemotherapy is given to you in tablet form or as an injection or short infusion, you will be treated as an outpatient. This may be in the Chemotherapy Unit of Plymouth Oncology Centre, or in the Day Case Unit on Birch Ward. If your chemotherapy infusion is over a longer period or has significant side effects, you will need to be admitted to our wards for one or more nights. Our two wards are Brent Ward - general oncology, or Bracken Ward haematology. 8 Will I have side effects? Some people do not have any side effects after their chemotherapy. If you do have side effects they are usually only temporary, and will go when the treatment has stopped. When you visit the hospital again the doctor and nurse will ask you if you have had any side effects. It is often busy in hospital and clinics and you may not want to bother the doctor with your problems, but it is important that you tell the doctor and nurse about your side effects. You may find it useful to write down when you have any side effects, there are blank pages in the back of this booklet. What side effects may I have? Reduced blood cell numbers Chemotherapy often affects the bone marrow. This is where your body produces your blood cells; red cells, white cells and platelets. The white cells in your body are important as they help you fight infection, they are also short lived, and so they will be quickly reduced by chemotherapy. About a week after your chemotherapy the number of white cells circulating in your blood stream will be reduced and this will persist for several days. This means that your body is much less resistant to infections, so a minor infection can quickly become very serious and if left untreated can be life-threatening. 9 It is important that you call the hospital or your GP immediately if you have a sore throat, your temperature is raised above 38oC, if you notice any unusual bleeding, bruises or you have small groups of red-purple spots / rash. Usually the number of white cells will return to normal within 3 weeks of the chemotherapy treatment. The other cells in the blood may gradually decline in number with repeated treatments and if you become anaemic (low haemoglobin or red cells) then you may be offered a blood transfusion. Nausea and vomiting Our aim is to control nausea and to prevent vomiting as far as possible following your chemotherapy. With many drugs you will be given anti-sickness injections. You will also be given anti-sickness tablets to take home. You will be advised on how and when to take these by the Chemotherapy Nurse. There are also steps you can take yourself to minimise symptoms: eat less, but more often, feelings of hunger can be mistaken for feelings of sickness avoid eating fatty or fried foods avoid food with a strong smell, or the smell of food cooking drink plenty of liquid, slowly, taking small sips 10 don’t lie down flat just before or after eating try to relax, perhaps to music or in the fresh air you may find ‘Sea bands’, the wrist bands useful, they are available from chemists ginger tablets or capsules, or ginger biscuits can also be helpful. If you are still feeling or being sick despite trying this advice and taking anti-sickness tablets, contact your GP or the hospital (see numbers at the front of this book). Diarrhoea Some chemotherapy drugs may cause diarrhoea, which usually settles within a couple of days. If you have diarrhoea, try to drink plenty of water or other drinks to replace the lost fluid. If you have been prescribed antidiarrhoea tablets, take these as per the prescription. Also, eat less fibre, fruit, vegetables and cereals. You may find that boiled whole grain rice is good for controlling diarrhoea. If symptoms persist for more than 24 hours, contact your GP or the Hospital (numbers at the front of this book). Constipation Some chemotherapy and anti-sickness drugs may cause constipation. To prevent this, try eating more fibre, fresh fruit and vegetables and drink at least 2 jugs of water or similar liquids per day. If this is not adequate and you become constipated, your local pharmacist will advise you on a suitable treatment. If you require further advice, contact your GP or the Hospital (numbers at the front of this book). 11 Loss of appetite You may find that you “go off” some foods just after your chemotherapy. This may also happen if you feel sick. You may notice an odd taste in your mouth, or that food tastes strange. This is because the chemotherapy has temporarily damaged your taste buds. If you have a strange taste in your mouth you may find sucking a strongly flavoured sweet or mint can disguise this. Fresh or tinned pineapple can also help with this symptom. If your appetite is poor and you are losing weight please ask your doctor or nurse to arrange for you to see the hospital dietitian. Painful, burning, red skin following intravenous chemotherapy Chemotherapy drugs must be injected into a vein carefully, so they don’t leak out of the vein and damage the skin. Some chemotherapy drugs are very damaging if they leak into the tissues. If after you go home you develop a burning or painful feeling near where the drug was injected, telephone the hospital for advice immediately. (Numbers at the front of this book). Some chemotherapy will cause a brown/red pigmentation on the skin above the vein where the drug is injected. This is harmless and will gradually fade with time. Sore mouth You may find that your chemotherapy gives you a sore mouth. It helps if you try and keep your mouth moist and clean. Clean your mouth and gently brush your teeth with 12 a soft toothbrush each morning, evening and after each meal. If you have dentures, take them out and clean them each morning, evening and after each meal. If you notice small white ulcers around your lips, or in your mouth or throat, you may have ‘thrush’. This is a common infection of the mouth when people are on treatment or ‘run down’, please contact your G.P. who can examine your mouth and prescribe some medicine or mouth wash. You may be given mouth wash solution to prevent potential mouth ulcers. Please take this medicine as directed and use it regularly. It is recommended that you dilute these solutions as they can be too harsh used neat. Diluting the mouthwash half and half with water will give you more solution to rinse your mouth. Hair loss Many patients associate the word chemotherapy with hair loss. It is often their biggest fear. However, many of the chemotherapy drugs that we use will not cause serious hair loss for most patients. More often they experience a little hair thinning. You may also lose some of your eyelashes, eyebrows and body hair. Here is some useful advice to help prevent you from damaging your hair: Avoid using hairdryers and other heated styling tools Avoid hair spray, dye and perms Cut down on the number of times you wash your hair each week 13 Use a gentle (pH neutral) shampoo and a conditioner Brush and comb your hair gently, using a soft hair brush or wide toothed comb If you do experience hair loss it will happen about 2 weeks after your chemotherapy injections. The hair loss is temporary and will grow back completely after treatment is finished. You will usually see re-growth within 3 - 4 weeks. If you lose your hair you may prefer to wear a hat, headscarf, turban or wig. If you would like a wig or turban, the chemotherapy staff, clinic nurses or Mustard Tree Support Centre staff can help arrange this. Our wigs are currently supplied by Browns. They have a shop in Plymouth city center and also visit the Macmillan Cancer Support Centre every Thursday. Which drugs cause hair loss? Some drugs: Doxorubicin, Epirubicin, Etoposide, Ifosfamide, Taxol and Taxotere are associated with severe hair loss. Other drugs can cause hair loss but it is dependent on the dose, the time taken to infuse the drug and the number of drugs used. Your Chemotherapy nurse will advise you further about this and more information can be found in the Macmillan leaflet about your particular chemotherapy regime. Scalp Cooling This is where a cold cap is placed on the head during treatment. The coldness of the cap cools the cells in the hair root and restricts the blood flow to these cells. This causes the cells’ metabolism to slow down for a short 14 while. They are then less affected by the circulating chemotherapy. This is not suitable for all types of chemotherapy treatment. The cap is put on 30 minutes before treatment, the hair is dampened and conditioner applied to ensure good contact between the scalp and the cold cap. It remains on the head throughout the treatment and for 1-2 hours afterwards. Scalp cooling significantly increases the length of time your treatment takes, but can be effective. In the Oncology Chemotherapy Unit we use the latest equipment for scalp cooling called the Paxman Scalp Cooler. They have an informative website with details of the procedure, photographs of the cooler and details of cooling times at www.paxman-coolers.co.uk. Fatigue (feeling exhausted all or most of the time) Everyone has good days and bad days, but due to disease and cancer treatments nearly everyone will experience some fatigue. Fatigue can mean more than being tired and weak. Other symptoms include leg pains, difficulty walking and climbing stairs, shortness of breath, difficulty concentrating and making decisions. This can sometimes continue for weeks or months after treatment is completed, making you feel irritable and low. There are many ways of combating fatigue and many strategies that can help you to manage your everyday activities, e.g: Keeping a diary to monitor when you are most tired and when you have most energy Spreading tasks out over the week Whenever possible sitting down to do chores 15 Asking others to cook and shop for you, or use precooked meals Regular light exercise Drinking plenty of fluids Using distraction techniques such as reading, visiting friends, listening to music Knowing when you have done enough. For more information you can read ‘Fatigue’ by Macmillan, free to all cancer patients and carers. Your Chemotherapy nurse can refer you to an Occupational Therapist, who can advise you on strategies to manage fatigue. You may also wish to speak to your specialist nurse if you have one. Sexual relationships Chemotherapy and the disease itself can affect sexual relationships. Some people may be unaffected by treatment whilst others have changes in levels of desire, changes in tolerance for physical activity and levels of fatigue. Anxiety and stress can also have an affect on sexual relationships. Often people find that sexual activity is not important during treatment. However, once treatment is over and normal life resumes, couples often find that it is during this time they need support, advice and information about resuming sexual activity. Sexual feelings should return following treatment although time is required to allow you and your partner to come to terms with the changes and experiences you have been through. These are very natural feelings and it is important to talk them through with your partner. 16 Feel free to discuss with your doctor and specialist nurse any matters relating to your sexual relations. If they cannot answer your questions they will be able to refer you to a counsellor or other health professionals who can help. Your feelings The very fact that you are having chemotherapy treatment for cancer is very daunting. All at once your whole life has been turned upside down. Future plans often have to be put on hold and you may feel that your life revolves around the hospital. We do understand this and will try to support you in whatever way we can. Fear, anxiety, irritability, depression and changes in mood are all possible for patients being treated for cancer. Some people deal with this by being quiet and not talking about things, others find it helps to discuss their feelings with as many people as possible. Some want to know everything about their treatment and others very little, preferring to ‘leave it to the doctor’. Loss of concentration may be a consequence of all these mixed feelings. You may find your mind wandering often. This can affect your ability to listen and recall what your nurses and doctors have said. If you miss something, do not be embarrassed to ask again what was said. You may find it useful to write down any questions you have regarding your treatment. At the back of this booklet is a section entitled ‘Who can I talk to for advice?’ This gives information about our support services, and there is a list of useful addresses and websites. 17 Fertility Unfortunately some chemotherapy treatments, though not all, cause infertility. This affect may be temporary or permanent depending on the particular treatment you are having. Your doctor will discuss this risk with you before treatment starts. Pregnancy should be avoided during chemotherapy and for two years afterwards in case the drugs affect the developing baby. For this reason you should use a reliable method of contraception. For women Some chemotherapy drugs may affect your ovaries and stop them producing eggs, although not all drugs will cause this to happen. If this does happen, it unfortunately means that you can no longer become pregnant, your periods will become irregular and eventually stop. It will also bring on symptoms associated with the menopause. If your ovaries are going to start working again after treatment finishes (the infertility is short lived), your periods will return to normal. At present ‘banking’ of eggs is rarely practised, but you may wish to discuss this with your consultant before starting chemotherapy. For men Some chemotherapy drugs will have no effect on your fertility, but some drugs may reduce the number of sperm you have or affect their ability to reach and fertilize the female egg during intercourse. If the chemotherapy does cause infertility, some men will remain infertile after treatment stops while for some sperm returns to normal levels. 18 If you have not completed your family you may be able to bank some of your sperm before chemotherapy starts. . If this is possible you will be asked to produce several sperm samples, which will be frozen and stored. This can then be used later if necessary to make your partner pregnant artificially. Other matters Tablets and Capsules Keep your tablets or capsules in the bottle or blister pack that they come in. Store them in a dark, cool dry place, out of the reach of children. If it looks as though a capsule has leaked inside the blister pack, do not open that blister. Read the label carefully and please ask the doctor, nurse or pharmacist if you are unsure about how or when to take you medicine. Is it ok to take other medicines and tablets? Let your hospital doctor and / or your G.P. know if you are taking any prescribed medicines or tablets, as well as any you have bought from the chemist (pharmacy) or health food shop. Please keep a list of all you medicines so that you can tell the doctor or nurse when you come to the hospital. If you do buy medicines at the chemists please tell the pharmacist what medication you are taking. Continuous chemotherapy at home Some patients, because of their particular disease may have continuous chemotherapy infusions via a pump into a tube in their veins. If you have problems with the equipment then you must telephone the relevant hospital department. You will have been given contact numbers 19 before going home. The numbers are also at the front of this booklet. If your pump, tube or chemotherapy syringe breaks, disconnects or leaks please clamp off the pump. Wrap the equipment in a plastic bag, telephone and come to the relevant department as soon as is practically possible. If any chemotherapy is spilt, put on rubber gloves and mop up any chemical with tissues, which you can then put in your syringe ‘burn bin’. Wash the affected area and your hands thoroughly afterwards. Where possible do not allow any other family members / carers to handle the spillage. Can I drink alcohol? If you are taking the chemotherapy drug Procarbazine, you must avoid alcoholic drinks, as well as low or nonalcoholic beers and lagers, during the course of capsules. You may take small amounts of alcohol a few days after having other chemotherapy drugs, but you should check this with your doctor. Alcohol is dehydrating and you should make up for this by drinking more water or soft drinks as well. Can I go on holiday? If you have planned to go on holiday when a treatment is due, please discuss this with your doctor, nurse or other member of staff. Your hospital doctor may delay a 20 treatment until you return. Generally we will fit around your arrangements. Many patients having chemotherapy will be more at risk from sunburn. Chemotherapy makes your skin more fragile or delicate. Some of the chemotherapy chemicals can make you more sensitive to the ultraviolet radiation of the sun. To avoid this, use a high factor sunscreen or cover up your skin. Emergencies or problems Call the hospital if: You have a temperature of 380C or more Shivering episodes Flu like symptoms You have nose bleeds, bleeding gums, bad bruising, black tarry stools (motions), or any signs of unexpected bleeding Vomiting which is not relieved by your anti-sickness medication Watery diarrhoea which has lasted more than 24 hours Mouth ulcers that stop you eating or drinking Chest pain or difficulty breathing Your skin is painful, red or blistered near where the drug was injected 21 You are having Capecitabine chemotherapy and your palms or soles become very sore and cracked Call your G.P. if: You feel tired and breathless and look very pale (you may be anaemic) You are still constipated despite eating more fruit, vegetables and fibre You have other illness 22 Which hospital should I telephone? If you are being treated in the Oncology Centre at Derriford Hospital, telephone the Chemotherapy Department on 01752 763974 (daytimes). At other times, telephone Brent Ward on 01752 792306. If you have a condition called Lymphoma telephone Birch Ward Day Case unit on 01752 792679. If you are being treated on Bracken Ward at Derriford Hospital, telephone 01752 432494. If you are being treated on Brent Ward at Derriford Hospital, telephone 01752 792306 Oncology Outpatients: 01752 763969 (Monday to Friday 9am to 5.30pm) Who can I talk to for advice? If you were treated in the Oncology Centre at Derriford Hospital, you or your family can contact the cancer nurse specialist who helps with your type of illness. She/he will have given you a contact phone number at the beginning of you treatment. If you were treated on Bracken Ward at Derriford Hospital, you or your family can telephone the ward on 01752 432494. There are nurse specialists for many of the cancers such as: breast colon and rectum genito urinary tract cancers gynaecological cancers head and neck cancers 23 leukaemia and lymphoma lung melanoma neurological cancers palliative care sarcoma upper gastro-intestinal tract (oesophagus, stomach, pancreas etc.) The Mustard Tree Macmillan Centre You may also visit the Mustard Tree Macmillan Centre on Level 3 at Derriford Hospital. It is open 9.30am - 4.30pm, Monday - Friday, telephone (01752) 763672, you may ‘drop in’ at any time. The centre is open to anyone affected by cancer - patients, relatives and carers. People can use the centre at any period in their illness. All the centre’s services are free of charge with the exception of activities classes when a small charge is made. Additionally, if you have a clinic appointment or are waiting for chemotherapy treatment you can wait in the Mustard Tree Macmillan Centre. You will be made welcome and offered refreshment (just let the clinic or chemotherapy receptionist know where you are). 24 Pastoral and Spiritual Care A Chaplin is available 24hrs a day, contactable via switchboard and here for absolutely everyone. They are here to offer a listening ear, help people make sense of their situation and only is desired can provide faith support from all major religions. Useful Websites The following are just a few of the cancer related websites available on the internet. Many of them have further links to cancer information. www.cancerhelp.org.uk CancerHelp UK is the patient information website of Cancer Research UK. www.christie.man.ac.uk the website of the Christie Cancer Hospital with useful information on cancer and chemotherapy. www.clic.uk.com www.macmillan.org.uk a very comprehensive information service. www.mariecurie.org.uk www.nhsdirect.nhs.uk much information and useful links. www.paxman-coolers.co.uk website for the company that makes our scalp coolers. www.plymouthhospitals.org.uk Our website, look for the Plymouth Oncology Centre in the departmental website section. www.royalmarsden.org.uk 25 The website of the Royal Marsden Hospitals, with useful information on cancer and chemotherapy. Notes Please write down any notes you wish to make e.g. questions to ask the doctor or nurse, lists of medicines and when to take them, or how you have been feeling, etc. 26 Notes 27 Notes This booklet is available in large print and other formats and languages. Contact: Patient Services Tel. 01752 763031 Revised Sept 2014,S Wellington For review: August 2016. Ref: C-133/Oncology/SW/Chemotherapy v4 28