Information for patients receiving chemotherapy

Transcription

1 Information for patients receiving chemotherapy

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3 Introduction This booklet has been produced to provide information for patients and their families about chemotherapy. It will address how chemotherapy works, how it is given and the most common side-effects. Most importantly, it gives advice on how you should care for yourself during and after your treatment. Your consultant has recommended this treatment as being the best option. However, depending on your diagnosis, different treatments such as radiotherapy or surgery may be considered an option. If you would like more information about this please speak to your consultant or one of the nurses caring for you. There is also the option of not receiving any treatment at all. The consequences of not receiving any treatment may be that the cancer cells will continue to grow and you may become more poorly. If you would like more information please speak to your consultant or one of the nurses caring for you. 2

4 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. Reasons you might have treatment are: To cure 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, but that are too small to detect. To relieve symptoms - without curing your cancer. Where will I receive my treatment? Where you will receive your treatment depends on what type of chemotherapy you are having. Some chemotherapy is given over a short time period and so may be administered as a day case treatment, either all in one day, or on several days, in the Combined Day Unit. Complex chemotherapy, which is given over a long period of time, and over several days, will be administered in one of our inpatient wards (Ward 302 and Ward 303). The Combined Day Unit offers treatment in a mixed sex environment. 3

5 Chemotherapy - how does it work? Chemotherapy is the name given to a group of drugs used to treat different types of cancer including leukaemia and lymphoma. The chemotherapy drugs work by interfering with the ability of cells to divide and grow. The affected cells become damaged and eventually die. As the drugs are carried in the blood, they can reach cancer cells all over the body. Unfortunately, chemotherapy drugs can also affect normal cells, sometimes causing side-effects. Unlike cancer cells, normal cells quickly recover, so any damage to them is usually temporary and most side-effects will disappear once the treatment is over. How are the drugs given? A course of chemotherapy consists of a number of treatments, which are given at regular intervals; this allows normal cells time to recover. Your individual treatment plan will be discussed with you. Chemotherapy can be given in a number of different ways. The most usual ways are by tablets (orally), or by an injection or drip into your vein (intravenously). Less common ways are an injection into a muscle (intramuscular), or into the fluid surrounding the spine (intrathecal). If you are going to receive intrathecal chemotherapy there is a separate information leaflet on this. Whichever way the drugs are given, (apart from intrathecal chemotherapy) they are carried around the body in the blood so they can reach the cancer cells. 4

6 How will I know if the treatment is working? Your doctor will monitor your progress throughout your treatment. This may include scans, x-rays, blood tests and examinations. All the tests check on your health and the way chemotherapy is affecting you. They will vary person to person and will be discussed with you on an individual basis. Whether or not you have side-effects from chemotherapy is not an indication of how well the treatment is working. What are the side-effects? Not everyone will have side-effects from their treatment. There are several general side-effects associated with chemotherapy. The main areas that can be affected are those areas where cells divide and grow quickly, such as your skin, hair, mouth, digestive system and your bone marrow (the spongy material filling the bones and where new blood cells are produced). In addition there are specific side-effects related to the individual drugs you will receive. You will be given a separate information sheet about this. 5

7 General side-effects 1. Low blood count Chemotherapy temporarily reduces the rate at which blood cells are produced in your bone marrow. This may cause your blood count to fall. Most of the time you will not notice this. However there may be occasions when you will experience the following symptoms, which may indicate that your blood counts are low: If your red cells are low, this is called anaemia. If you are anaemic you may feel unusually tired, have aching legs, headaches, or feel short of breath when doing moderate exercise (for example climbing stairs). This may get better on its own, although some people may need a blood transfusion to relieve their symptoms. If your white cells are low you will be more susceptible to infections (see point 2). If they become very low this is called neutropenia. There are no specific signs or symptoms of neutropenia, although some people find they feel tired and washed out when their white blood count is low. Some people suffer with a sore mouth when they are neutropenic. The only way to tell for certain if you are neutropenic is to do a blood test. If your platelet count is low you will be more prone to bruising and bleeding. You can have a very low platelet count without having any problems. Signs of a low platelet count include spontaneous bruising, and a petechial rash. This looks like small red spots under the skin, which do not go away if you press on them. If you have a very low platelet count and are bleeding you may need some tablets and/or a transfusion of platelets to prevent further bleeding. 6

8 2. Infection/reduced immunity If you are neutropenic you are at a higher than normal risk of getting infections. As your body has no natural defence against infection, if you get an infection you will become ill much more quickly than normal, and may feel very unwell. As you have no natural defences against infection you will not get better without treatment with antibiotics. In addition, some types of infection can cause your blood pressure to drop and become life threatening in a very short time. For these reasons, if you are at home, you must contact us as soon as you feel unwell. If you are in hospital your condition will be regularly monitored by the nursing staff, however if you feel unwell you should tell the nurses straight away. The chances of us successfully treating any infection you catch decrease the longer you wait before starting treatment. Signs and symptoms of possible infection are listed on page Bleeding To help prevent bleeding problems: Only use an electric shaver. To prevent bleeding gums do not use a hard toothbrush or dental floss. Watch out for blood in your urine and bowel movements. Urine will appear red or very dark brown coloured and stools will appear black and tarry or bright red. 7

9 4. Nausea and vomiting Because modern anti-sickness drugs are very powerful it is unusual to feel or to be sick whilst you are on treatment. You will be given anti-sickness drugs 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 antisickness drugs are better at preventing rather than stopping sickness. In the unlikely event that you do feel sick or vomit following your treatment, there are many extra anti-sickness drugs we can give to help overcome this problem. If you experience vomiting at home then anti-sickness tablets may not be effective and you may easily become dehydrated, it is important that you contact the hospital straight away. 5. Sore mouth/mouth ulcers It is important to keep your mouth clean and healthy. Please ask the staff for the information sheet on mouth care and chemotherapy. If you do get any problems with your mouth please inform your medical team immediately. For a few months following your treatment, your mouth may be more sensitive than normal. You should continue with a good mouth care routine. 6. 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 2 or 3 months after the end of treatment. Taste changes may also be caused by infection in your mouth. Please inform your medical team of any changes you may have eg. sore mouth. 7. Diarrhoea/constipation Certain chemotherapy drugs can change your normal bowel habit. Medication can be given to help. Please inform your medical team as soon as possible so that the symptoms are treated quickly. 8

10 8. Hair loss Some chemotherapy drugs cause hair loss. This is because chemotherapy attacks all cells that divide rapidly, and hair cells do this. If you are likely to experience hair loss, the doctor or nurse will discuss this with you and provide you with a referral for a wig before you start your treatment. Hair loss can be very distressing, however it is almost always temporary. Please remember that your hair will grow back when treatment is over. 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 you may experience prickling tender sensation in the scalp before hair loss. It can occur on all parts of the body eg. head, face, arms, legs etc. For advice on hair care during treatment see the chapter Caring for yourself. Please ask your nurse, receptionist or Macmillan Information Centre for details of wig suppliers. For some types of cancer treatments, scalp cooling may help reduce hair loss. If this is available for your treatment, it will be mentioned on the information leaflet given to you about your chemotherapy. Scalp cooling is not used for patients having chemotherapy for leukaemia or lymphoma as it may increase the chances of relapse following treatment. Please ask the nurse looking after you, or your specialist nurse if you would like further information about scalp cooling. 9. Fertility Fertility and chemotherapy is a very complex subject, and cannot be covered here in depth. You should discuss any fertility issues with your doctors and specialist nurses before you start treatment. 9

11 Some chemotherapy drugs can damage the ovary or testis, leading to an increased risk of infertility (inability to have a child). Although chemotherapy may make you infertile during your treatment there is still a chance of getting pregnant or fathering a child. In general men are more likely to be made infertile by chemotherapy than women. This applies to men of any age. Women are less likely in general to be infertile following treatment. However the risk of infertility increases with age. Generally women under the age of 20 are quite likely to remain fertile even after very intensive chemotherapy. Women over the age of 30 are very likely to be made infertile or go into early menopause following treatment, however this very much depends on the type of chemotherapy you are having. During treatment women may experience irregular periods, or periods which are lighter or heavier than normal. Some chemotherapy drugs will stop periods completely during treatment. These effects may last for many months after treatment has finished. Usually after treatment is over, if your periods return and are regular, you will be ovulating normally and will have normal fertility. If your periods are absent or are irregular a year after treatment you should ask your doctor to refer you to a gynaecologist for fertility studies. Even if your periods return to normal you are likely to have an early menopause. If you wish to have children you should get advice from the doctors about when it is safe to try. It may be possible to take measures to preserve fertility, by storing sperm or ovarian tissue. However, this depends very much on individual circumstance. Your doctors will discuss fertility with you and refer you to an appropriate specialist for advice if you wish. It is very important that you discuss all the options before you commence chemotherapy. Once treatment has started it is too late. 10

12 10. Pregnancy It may be possible to become pregnant during the time you are having chemotherapy, but it is not advisable to do so. Some chemotherapy drugs can harm the unborn child. Even if we can treat you whilst you are pregnant, this adds an increased risk of complications for both the mother and the unborn child. There is no evidence that fathering a child whilst receiving chemotherapy carries any risk for the baby. You are very strongly advised to use a very reliable form of contraception during treatment and for at least 6 months afterwards. Patients having curative chemotherapy may be advised to avoid pregnancy for even longer than 6 months. You need to discuss this with your consultant at your follow up appointment. This applies to men and women. Each chemotherapy treatment has a different affect on fertility, so you should ask the medical team looking after you for advice about contraception. If you or your partner suspects that you might have conceived a child during treatment you must tell us immediately. 11. Coloured urine Some chemotherapy drugs may cause the urine to change to a red or blue-green colour. This occurs because the chemotherapy drug is coloured and is naturally excreted from the body in this way. This is normal and should disappear within 24 hours, but if you are at all worried please speak to one of the chemotherapy team, eg. your doctor, one of the nurses, or the pharmacist. 11

13 IMPORTANT MESSAGE - for chemotherapy and haematology patients. There is now a 24 hour helpline number to call if you feel generally unwell. Telephone Rapid Response Alert Card The Rapid Response Alert Card is given to all chemotherapy patients at the start of treatment. You MUST keep this card with you at all times. The card is credit-card sized to easily fit into your purse/wallet. Chemotherapy can temporarily reduce your ability to fight infection. Infections can develop rapidly. If you think you have an infection it is essential that you DO NOT DELAY in contacting the 24-hour chemotherapy helpline number. Important: Present the alert card (to whoever treats you) should you become unwell. Medical staff need to know you are on chemotherapy and this will ensure you are treated promptly. Early infections can be treated easily if you contact us - DO NOT DELAY! IMPORTANT ADVICE TO ALL PATIENTS You are strongly advised to keep a thermometer at home. During chemotherapy you are more prone to infections and bleeding. Even very slight symptoms may require URGENT TREAT- MENT and must NOT be ignored. If you feel generally unwell for any reason eg. pain, sickness, vomiting, unusual tiredness, have a temperature eg. feel cold, shivery, hot, flushed, sweaty, or experience any signs of infection eg. cold, flu, sore throat, cough, sore mouth: You MUST contact the hospital immediately, day or night and NOT your general practitioner. Failure to follow these instructions could be life threatening. The list of symptoms is a general guide only. Advice must be sought for any change in your health. If unsure always contact as advised. 12

14 Caring for yourself Even though chemotherapy treatment can cause unpleasant side-effects, some people still manage to lead an almost normal life during their treatment. Many people find they recover quickly between cycles of treatment and resume their usual activities as they begin to feel better. Having chemotherapy can be a very stressful time for both you and your family, and it is common to feel down at times. Do not be frustrated if your lifestyle does not return to normal immediately. Be patient with yourself. For more information see the leaflet How do you feel? Avoiding infection Do not become a hermit! It is important for your emotional well being to live as normal a life as possible whilst you are on chemotherapy. There is very little risk of catching infections from normal social situations. However you do need to be aware of some specific risks. You should avoid: Young children who are poorly (if possible). People with flu or other infections, especially chicken pox, measles or shingles. Swimming or using saunas. If you are very neutropenic as a result of chemotherapy you should follow the advice given in the Neutropenia booklet. Bleeding problems If you have a low platelet count you should avoid activity that might cause bruising or injury. If you have a head injury when your platelet count is low you should contact the emergency numbers given on page 12 or those on your chemotherapy diary card immediately. 13

15 Activity You may feel weak and more tired than usual. Building up your strength will take time, so do a little gentle exercise each day, eg. walking. The object of exercise is not to overdo it but just to do as much as you comfortably can. For further information please see the leaflet Tiredness. Many people find that they have difficulty concentrating or reading for any length of time whilst they are having chemotherapy. This is normal and usually gets better once you finish treatment. Hair Here is some advice on hair care during your treatment. Avoid: Harsh chemicals such as perms or dyes until at least 6 months after completing your treatment. Excessive heat from hairdryers and styling appliances. Combing or brushing your hair vigorously. Plaiting your hair can damage it. Use ribbon rather than elastic if you wear your hair up. Do: Use a soft brush or wide toothed comb. Use a gentle shampoo. Try to restrict how often you wash your hair, and use a conditioner each time. Keep your hair short to avoid the weight pulling on your scalp. Protect your scalp from excessive heat or cold (wear a scarf or hat). Experiment with your make-up to your eyes to draw attention to your face, and away from your hair. If you are thinking about colouring your hair please speak to your hairdresser, and use a henna based colourant. 14

16 Diet Following chemotherapy you may have eating problems such as a dry mouth, changes in taste and a reduced appetite. It may take a few months before your appetite is back to normal. Try to eat a well balanced diet and to drink at least 6-8 glasses of fluid a day. There is no ban on alcohol unless your doctor has told you otherwise. You need to be careful about preparing food, eg. make sure your food is fresh and not out of date, wash all salad foods, fruit and vegetables very well and make sure your eggs are well cooked. If you are on an intensive chemotherapy regime, 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 further information and advice see leaflet on Diet and/or ask staff if you would like to talk to a dietician. Further advice on diet for people who are likely to become very neutropenic can be found in the Neutropenia booklet. Hygiene Your skin may be drier and more sensitive than normal due to the treatment so you may need to use an aqueous based lotion. If your skin becomes red, painful or itchy, contact the chemotherapy team for advice. Further advice on hygiene for people who are likely to become very neutropenic can be found in the Neutropenia booklet. 15

17 Sexual activity There is no medical reason why you should not have a normal sex life during treatment with chemotherapy. Resuming sexual activity usually depends on how you feel, rather than any medical considerations. However, patients who have very low blood counts should ask their chemotherapy nurses for advice on resuming sexual activity. If you have any questions/issues related to this please speak to either your clinical nurse specialist or chemotherapy nurse. Macmillan Cancer Support publish a booklet on sex and cancer. There have been cases of irritation caused in the partner of chemotherapy patients during sex. It is thought that this is due to chemotherapy being present in the body fluids of the person being treated. There is no evidence that this is harmful in any way, but it may be advisable to use a barrier method of contraception for 7 days or so after having chemotherapy. Other general advice Going on holiday It may be possible for you to go away in-between your treatments but you will need to discuss this with your doctor. If you are intending to travel abroad it is advisable to check that your travel insurance provides adequate cover. If you would like further information on holiday and travel advice or details of insurance companies please ask your nurse or the Macmillan Information Centre. 16

18 Receiving dental treatment If you require any treatment it is better it to have this done before you start chemotherapy. If you require some dental work once you have started chemotherapy please contact your doctor or the chemotherapy nurses for advice. It may be necessary for you to have a blood test before the dentist can treat you. Always take your chemotherapy diary card with you so your dentist can see when you last had treatment. Your doctor or specialist nurse will be happy to speak to your dentist concerning any relevant details of your treatment if necessary. Driving During your treatment your ability to drive may be affected. You will need to discuss this with your doctor. For further information please see the leaflet Driving information and advice for people with cancer. SAFETY WITH TABLETS It is very important that you keep any chemotherapy tablets in a safe place where children cannot get them. Chemotherapy tablets could cause serious harm if accidentally swallowed by a child. Handling chemotherapy tablets/capsules If a friend or relative has to give you your chemotherapy tablets/ capsules, they need to take care NOT to directly handle the tablets/ capsules. They should wear plastic gloves or pass them to you in a medicine pot. 17

19 Immunisations If you require vaccinations, (eg. for holidays or flu) consult the doctor or nurses looking after you before you go ahead. Some vaccinations are unsafe to give to people having chemotherapy or for some time after treatment. Some types of vaccination do not work at all with certain conditions. Patients undergoing chemotherapy are advised to have the flu vaccination and that this should be repeated annually. Ideally it should be given 2 weeks before starting treatment, although if this is not possible it can be given between cycles. You may need to have a blood test first to make sure that your blood count is high enough to have an injection. Need more information? If you or your family requires further information about your condition and/or treatment, or if you have any worries about anything, please do not hesitate to speak to the medical and nursing staff. We are here to help. Please contact us on and choose option 2. Further information can be obtained from: Macmillan Information Centre Royal Derby Hospital Monday - Friday, 8.30am pm Telephone: (24 hour answerphone) The Information Centre offers information about cancer at all stages of the disease, the types of treatments that may be offered and the services that are available locally and nationally. The Centre complements the information you will be given by the doctors, nurses or other healthcare professionals and operates as part of the whole team. Alternatively, if you are a haematology patient please telephone your Clinical Nurse Specialist on or

20 Trust Minicom Any external organisations and websites included here do not necessarily reflect the views of the Derby Hospitals NHS Foundation Trust, nor does their inclusion constitute a recommendation. Reference Code: P0937/0046/ /VERSION8 Copyright All rights reserved. No part of this publication may be reproduced in any form or by any means without prior permission in writing from the Patient Information Service, Derby Hospitals NHS Foundation Trust. (P0560/ /V7) Smoking is not permitted anywhere in the buildings and grounds of Derby s Hospitals. For advice and support about giving up smoking please call Free Phone