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Understanding chemotherapy - Macmillan Cancer

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A practical guide to testsand treatments


ContentsContentsAbout this booklet 4What is cancer? 6Chemotherapy 8How <strong>chemotherapy</strong> drugs work 10When <strong>chemotherapy</strong> is used 13Planning <strong>chemotherapy</strong> 14Where <strong>chemotherapy</strong>is given 21How <strong>chemotherapy</strong> is given 24Possible side effects 42Changes to your treatment plan 63Late effects of <strong>chemotherapy</strong> 65Effects on everyday life 67Effects on sex life and fertility 69Research – clinical trials 77Complementary therapies 79Your feelings 81How you can help yourself 82How others can help 84Work 87Financial help and benefits 88After treatment 911


<strong>Understanding</strong> <strong>chemotherapy</strong>How we can help you 92Other useful organisations 96Further resources 100Your <strong>chemotherapy</strong> 103Chemotherapy – questions you could ask 1042


Contents3


<strong>Understanding</strong> <strong>chemotherapy</strong>About this bookletThis booklet is about <strong>chemotherapy</strong>, which isa treatment for cancer. We explain how<strong>chemotherapy</strong> works and how it’s given.There’s also information about common sideeffects, how they can be treated and whatyou can do to manage them.Sometimes low doses of <strong>chemotherapy</strong> are used to treatnon-cancerous conditions. This booklet only explains theuse of <strong>chemotherapy</strong> for cancer.Throughout the booklet we have included comments frompeople who have had <strong>chemotherapy</strong>, which you may findhelpful (some names have been changed). They are fromthe healthtalkonline website (healthtalkonline.org).If you have further questions about your <strong>chemotherapy</strong>ask your cancer doctor or specialist nurse who knowabout your situation.We have over 90 fact sheets that give detailed informationabout the use and side effects of particular <strong>chemotherapy</strong>drugs and many commonly used combinations of drugs.If you would like any of these fact sheets, please contact us.4


About this bookletIf you’d like to discuss this information, call the <strong>Macmillan</strong>Support Line free on 0808 808 00 00, Monday–Friday,9am–8pm. If you’re hard of hearing you can use textphone0808 808 0121, or Text Relay. For non-English speakers,interpreters are available. Alternatively, visit macmillan.org.ukTurn to pages 96–102 for some useful addresses and helpfulwebsites. You’ll find a useful table on page 103 where youcan make notes about your own <strong>chemotherapy</strong> treatment.There’s also a list of questions you may want to ask yourcancer doctor or specialist nurse on pages 104–105.If you find this booklet helpful, you could pass it on to yourfamily and friends. They may also want information to helpthem support you.5


<strong>Understanding</strong> <strong>chemotherapy</strong>What is cancer?The organs and tissues of the body are made up of tinybuilding blocks called cells. <strong>Cancer</strong> is a disease of these cells.<strong>Cancer</strong> isn’t a single disease with a single cause and a singletype of treatment. There are more than 200 different kinds ofcancer, each with its own name and treatment.Although cells in different parts of the body may look and workdifferently, most repair and reproduce themselves in the sameway. Normally, cells divide in an orderly and controlled way.But if for some reason the process gets out of control, the cellscarry on dividing, and develop into a lump called a tumour.Tumours can be either benign (non-cancerous) or malignant(cancerous). Doctors can tell whether a tumour is benign ormalignant by removing a piece of tissue (biopsy) and examininga small sample of cells under a microscope.Normal cellsCells forming a tumour6


What is cancer?In a benign tumour, the cells do not spread to other parts ofthe body and so are not cancerous. However, they may carryon growing at the original site, and may cause a problem bypressing on surrounding organs.In a malignant tumour, the cancer cells have the ability tospread beyond the original area of the body. If the tumour isleft untreated, it may spread into surrounding tissue. Sometimescells break away from the original (primary) cancer. They mayspread to other organs in the body through the bloodstreamor lymphatic system (see below).When the cancer cells reach a new area they may goon dividing and form a new tumour. This is known as asecondary cancer or a metastasis.The lymphatic system is part of the immune system –the body’s natural defence against infection and disease.It’s made up of organs such as bone marrow, the thymus,the spleen, and lymph nodes. The lymph nodes throughoutthe body are connected by a network of tiny lymphatic tubes(ducts). The lymphatic system has two main roles: it helpsto protect the body from infection and it drains fluid fromthe tissues.When the cancer cells reach a new area, they may goon dividing and form a new tumour. This is known asa secondary cancer or a metastasis.7


<strong>Understanding</strong> <strong>chemotherapy</strong>ChemotherapyChemotherapy uses anti-cancer (cytotoxic) drugs to destroycancer cells. Cytotoxic means toxic to cells. <strong>Cancer</strong> typesinclude leukaemia, lymphoma and myeloma.Chemotherapy drugs disrupt the way cancer cells grow anddivide but they also affect normal cells.Sometimes <strong>chemotherapy</strong> is used alone to treat some typesof cancer. But often it’s used with other treatments such assurgery, radiotherapy, hormonal therapy, or other anti-cancerdrugs such as targeted or biological therapies.Chemotherapy drugsNot all cancers are treated with the same <strong>chemotherapy</strong> drugsor in the same way. There are many different <strong>chemotherapy</strong>drugs and new drugs are being developed all the time.Research that’s already been done will help your cancerspecialist decide the most effective drugs to treat the type ofcancer you have. You may have one drug or a combinationof different drugs.We have fact sheets about individual <strong>chemotherapy</strong>drugs and some combinations of <strong>chemotherapy</strong> drugs.8


ChemotherapyOther anti-cancer drugsOther anti-cancer drugs are used to treat cancer but they’renot usually known as <strong>chemotherapy</strong>. For example, newer drugscalled targeted treatments or biological therapies are directedat certain parts of the cancer cells and work differently to<strong>chemotherapy</strong>.We have other information about individualtargeted therapy drugs.9


<strong>Understanding</strong> <strong>chemotherapy</strong>How <strong>chemotherapy</strong>drugs workChemotherapy drugs work by stopping cancercells reproducing.The drugs are carried in the blood so they can reach cancercells anywhere in the body. Different drugs damage cancercells in different ways. When a combination of drugs is usedeach drug is chosen for its different effects.Chemotherapy drugs are also taken up by some healthy cells.These healthy cells can usually repair damage caused by<strong>chemotherapy</strong> but cancer cells can’t and eventually die.Side effectsThe effect that <strong>chemotherapy</strong> drugs have on some of thehealthy cells in your body can cause side effects. Most sideeffects will go away when treatment is over.Healthy cells in certain parts of the body, such as the bonemarrow (which makes blood cells) and the digestive system,are especially sensitive to <strong>chemotherapy</strong> drugs. This is whycertain side effects, such as risk of infection or feeling sick,are more common. There’s information on side effects andhow they can be reduced and managed on pages 42–61.10


How <strong>chemotherapy</strong> drugs workMonitoring the effects on the cancerDuring treatment, your cancer doctor may want to find outhow the cancer is responding to the <strong>chemotherapy</strong> drugs.This can be done in different ways.If a cancer can be felt or is visible, your doctor will beable to tell if it’s responding to <strong>chemotherapy</strong> by doinga physical examination.If the cancer can be seen on a scan, you may have anotherscan after a few treatments of <strong>chemotherapy</strong> to see if thecancer is getting smaller. If you’re having <strong>chemotherapy</strong>to reduce the risk of cancer coming back after surgery(adjuvant <strong>chemotherapy</strong>), you won’t usually need scansto check if it’s working.With some cancers, blood tests can be used to check iftreatment is working. These cancers release proteins inthe blood (called tumour markers) that can be measuredwith a blood test. If the tumour markers are reducing itusually means the <strong>chemotherapy</strong> is working.If results show the cancer hasn’t responded well enough, yourdoctor may decide to give you different <strong>chemotherapy</strong> drugs.11


<strong>Understanding</strong> <strong>chemotherapy</strong>12


When <strong>chemotherapy</strong> is usedWhen <strong>chemotherapy</strong> is usedHaving <strong>chemotherapy</strong> will depend on different factors.These include the type of the cancer you have, the risk ofit coming back, if it has spread and your general health.Chemotherapy can be used in the following ways:• as a main treatment for cancers, such as lymphomasand leukaemias• before surgery or radiotherapy to shrink a cancer(called neo-adjuvant <strong>chemotherapy</strong>)• after surgery or radiotherapy to reduce the risk ofcancer coming back by treating any remaining cells(called adjuvant <strong>chemotherapy</strong>)• at the same time as radiotherapy to make it work better(called chemoradiation)• to treat cancer that has spread into surrounding tissues(locally advanced) or to other parts of the body.This may cure certain cancers but, more commonly,the aim is to shrink and control a cancer to try toprolong life, and to relieve symptoms. Chemotherapy torelieve symptoms is called palliative <strong>chemotherapy</strong>.Your cancer doctor or <strong>chemotherapy</strong> specialist nursewill explain why <strong>chemotherapy</strong> is being advised in yoursituation. You can read more about this in our sectionon treatment planning (see pages 14–19).13


<strong>Understanding</strong> <strong>chemotherapy</strong>Planning <strong>chemotherapy</strong>Your treatment is planned by your cancer doctor (clinical ormedical oncologist) who is an expert in treating peoplewith cancer using <strong>chemotherapy</strong>, radiotherapy and otheranti-cancer drugs.Other health professionals are also involved in your care.You may be introduced to a <strong>chemotherapy</strong> nurse specialistwho will give you information and support.Your cancer specialist or your specialist nurse will explain theaims of your <strong>chemotherapy</strong>, possible side effects, and thebenefits and disadvantages to you.Giving your consentBefore you have any treatment, your doctor will explain itsaims. They will usually ask you to sign a form saying that yougive permission (consent) for the hospital staff to give you thetreatment. No medical treatment can be given without yourconsent, and before you are asked to sign the form you shouldbe given full information about:• the type and extent of the treatment• its advantages and disadvantages• any significant risks or side effects• any other treatments that may be available.14


Planning <strong>chemotherapy</strong>If you don’t understand what you’ve been told, let thestaff know straight away, so they can explain again.Some cancer treatments are complex, so it’s not unusualto need repeated explanations.It’s a good idea to have a relative or friend with you when thetreatment is explained, to help you remember the discussion.You may also find it useful to write a list of questions beforeyour appointment. There are some example questions listedon pages 104–105.People sometimes feel that hospital staff are too busy toanswer their questions, but it’s important for you to knowhow the treatment is likely to affect you. The staff shouldbe willing to make time for your questions.You can always ask for more time if you feel that you can’tmake a decision when your treatment is first explained to you.You are also free to choose not to have the treatment. The staffcan explain what may happen if you don’t have it. It’s essentialto tell a doctor or the nurse in charge, so they can record yourdecision in your medical notes. You don’t have to give a reasonfor not wanting treatment, but it can help to let the staff knowyour concerns so they can give you the best advice.We have a booklet called Making treatmentdecisions that we can send you.15


<strong>Understanding</strong> <strong>chemotherapy</strong>Preparing for <strong>chemotherapy</strong>Your cancer specialist will tell you if you need any tests beforeyour <strong>chemotherapy</strong> or if any other preparations are needed.Before starting your treatment, a nurse will check yourheight and weight at the clinic. Your cancer doctor uses thisinformation to work out the right dose of <strong>chemotherapy</strong> for you.TestsSome <strong>chemotherapy</strong> drugs can affect organs such as theheart or the kidneys. You may need tests to measure howwell these organs are working before you have <strong>chemotherapy</strong>.For example, if you’re having drugs that can affect the heartyou may have an echocardiogram (uses sound waves to createa picture of the heart).Some people may need further scans or x-rays to find out moreabout the extent of the cancer (its stage) before <strong>chemotherapy</strong>.Dental checksYou may be advised to have a dental check-up before<strong>chemotherapy</strong>. Having dental work during <strong>chemotherapy</strong> canbe more complicated as you’re more at risk of an infection.16


Planning <strong>chemotherapy</strong>Your course of <strong>chemotherapy</strong>How often you have <strong>chemotherapy</strong>, how it’s given, and howlong your whole course takes depends on:• the type of cancer you have• the <strong>chemotherapy</strong> drugs you’re having, and how the cancerresponds to the drugs• how the side effects are affecting you.Sometimes treatment involves having <strong>chemotherapy</strong> in morethan one way. For example, you may have <strong>chemotherapy</strong> intoa vein (intravenous) and <strong>chemotherapy</strong> tablets.Chemotherapy is usually given as several sessions of treatmentfollowed by a rest period of a few weeks. The rest period allowsyour body to recover from the side effects, and the number ofcells in your blood to go back to normal.Some people are given drugs a day or two before treatment toreduce the risk of an allergic reaction or sickness. This dependson the type of <strong>chemotherapy</strong> and your nurse will go over thiswith you.Chemotherapy and the rest period make up a cycle of yourtreatment. Your cancer doctor will explain the number of cyclesyou need to treat the cancer. After your first cycle, you’ll havea better idea of what you can plan for, and how much you mayor may not be able to do.17


<strong>Understanding</strong> <strong>chemotherapy</strong>The complete course of all your <strong>chemotherapy</strong> may takeseveral months.Chemotherapy is sometimes given continuously by an infusionpump (see page 36) for several days or several weeks. If you’rehaving <strong>chemotherapy</strong> as tablets or capsules (see pages 37–38),you may have them daily for several weeks or months beforea rest period.Blood testsYou’ll have a blood test before your <strong>chemotherapy</strong>.To save time, your blood may be checked a day or twobefore <strong>chemotherapy</strong>. This can be done at the hospitalwhere you’re having <strong>chemotherapy</strong>, or by your GP, practicenurse or a hospital closer to home. The results will be readyfor you when you go to have your <strong>chemotherapy</strong>.Other things to think aboutHere are some other things to think about before you start<strong>chemotherapy</strong>.Taking other drugs, vitamins or supplements Always tellyour cancer doctor about any prescription and over-the-counterdrugs, vitamins or supplements you’re taking. Some vitamins orsupplements may interact with <strong>chemotherapy</strong> drugs and maketreatment less effective.18


Planning <strong>chemotherapy</strong>Your fertility Some <strong>chemotherapy</strong> drugs affect fertility(the ability to get pregnant or father a child). If this is a concernfor you, it’s very important to talk to your cancer doctor beforetreatment. Sperm or eggs that can be used to try to preserveyour fertility should be stored before <strong>chemotherapy</strong> begins(see pages 73–74).Getting a wig If the <strong>chemotherapy</strong> drugs cause hair loss it’sbest to have a wig fitted before your hair falls out. You canthen match it to your own colour and style (see pages 49–51).Help at home Chemotherapy makes you tired so you mayneed help with day-to-day chores. Although it can be hard toask for help, family and friends are usually keen to do whateverthey can. If you live alone or are caring for someone else,you can ask to see the hospital social worker about getting help.Help with children If you have children you may needhelp with taking and picking them up from school or clubs.Family and friends can usually organise a rota of help.It’s also useful to know who you can contact at short noticeto look after your children. We have more information onchildcare when you have cancer.Work or further education It’s a good idea to talk toyour employer (see page 87) or tutors, so they can makearrangements to support you and organise your time offduring treatment.19


<strong>Understanding</strong> <strong>chemotherapy</strong>20


Where <strong>chemotherapy</strong> is givenWhere <strong>chemotherapy</strong>is givenUsually <strong>chemotherapy</strong> is given in a <strong>chemotherapy</strong> dayunit or an outpatient clinic. But depending on the type of<strong>chemotherapy</strong>, some people may need to have it duringa stay in hospital.Chemotherapy day unitChemotherapy drugs into a vein (intravenous) are usually givento you by nurses in a <strong>chemotherapy</strong> day unit. They take bloodsamples, give you your <strong>chemotherapy</strong> and monitor you for sideeffects. They also provide information and support to you andyour family.The nurses try to make sure the unit has a calm atmosphereand the environment is comfortable. There are normallyrecliner chairs and some beds if you need more rest.You can usually have a relative or friend to stay with youuntil you’re ready to go home. There may be volunteers whohelp with drinks or snacks when you need them. Some unitsalso have complementary therapists who provide therapieslike reflexology (see page 79).Having the <strong>chemotherapy</strong> drugs may take from half an hourto a few hours. But you may also have to wait for blood results,your <strong>chemotherapy</strong> drugs to be made up by the pharmacy,or to see your cancer doctor. The nurses will try to keep anywaiting to a minimum.21


<strong>Understanding</strong> <strong>chemotherapy</strong>You can take some things with you to help pass the timeand feel more comfortable, such as:• a soft, cosy blanket or slippers• an MP3 player or personal stereo with relaxing musicor relaxation techniques• a newspaper, some magazines, a book or an e-reader• some favourite snacks in case you get hungry• playing cards or some knitting.After you’ve had your <strong>chemotherapy</strong>, the nurses may giveyou drugs to take at home or a prescription for the hospitalpharmacy. This may include anti-sickness drugs, steroids orany <strong>chemotherapy</strong> tablets you need to take.Chemotherapy in hospitalSome <strong>chemotherapy</strong> treatments are more complex and thismay mean you need to stay in hospital to have your treatment.Your cancer doctor or specialist nurse will explain moreabout this.Chemotherapy at homeSometimes, specialist <strong>chemotherapy</strong> nurses visit people athome to give intravenous <strong>chemotherapy</strong>. This service is onlyavailable in some parts of the UK and only with certain<strong>chemotherapy</strong> treatments. Your cancer doctor can tell youmore about this.22


Where <strong>chemotherapy</strong> is givenHow to contact the hospitalYou will be given telephone numbers to contact the hospitalif you have a temperature (see page 33), feel unwell or needadvice on side effects. This should include ‘out-of-hours’contact details for evenings, during the night or the weekend.Some cancer centres have a 24-hour number you can call atany time for advice.It’s very important to keep the numbers somewhere safe(save them in your mobile phone for example), and to followthe contact advice you’ve been given by the <strong>chemotherapy</strong>nurse or cancer doctor.‘The nurses were always prepared to answerthe phone 24 hours a day, if you had cancerrelated side effects or symptoms that youdidn’t understand or you couldn’t cope with.They were really very helpful.’Rob23


<strong>Understanding</strong> <strong>chemotherapy</strong>How <strong>chemotherapy</strong> is givenChemotherapy can be given in different ways dependingon the type of cancer you have and your treatment plan.Your <strong>chemotherapy</strong> nurse will explain what’s involved.It’s standard for nurses to wear gloves and a plastic apronwhen they give you <strong>chemotherapy</strong>. This is just a precautionto protect themselves from any spillage of the drugs.Chemotherapy can be given:• by injection or a ‘drip’ directly into a vein(intravenous <strong>chemotherapy</strong>)• by mouth as tablets or capsules (oral <strong>chemotherapy</strong>)• by injection into the fluid around the spine and brain(intrathecal <strong>chemotherapy</strong>)• directly into a body cavity, for example the bladder• by injection into muscle or under the skin• directly to the skin as a cream for some skin cancers.24


How <strong>chemotherapy</strong> is givenChemotherapy into a veinChemotherapy given into a vein (intravenous) goes directlyinto your blood and is carried to all areas of your body.It can be given through:• a cannula – a short thin tube put into a vein in your armor the back of your hand (see page 26)• a central line put in through the skin of your chest or neckinto a vein in the chest (see pages 27–28)• a PICC (peripherally inserted central venouscatheter) line put into a vein in the arm and threadedthrough to a vein in the chest (see pages 29–30)• an implantable port (portacath) put into a vein andhas an opening (port) under the skin on your chest or arm(see pages 30–31).When your cannula, line or port is in place the <strong>chemotherapy</strong>drugs can be given into it by injection, as a drip on its ownor through a pump. There’s more information about this onpages 36–37.Your nurse will check that the cannula, line or port is workingproperly before giving you the <strong>chemotherapy</strong>.25


<strong>Understanding</strong> <strong>chemotherapy</strong>CannulaHaving a cannula put in can be a bit uncomfortable orpainful, but it shouldn’t take long and any pain soon wearsoff. Your nurse might put anaesthetic cream or spray ontothe skin to numb the area first.The cannula is put into a vein in the back of your hand orlower arm. Your nurse will place a see-through dressing overit to make sure it stays in place. The cannula is removed beforeyou go home.If you feel any discomfort, or notice redness orswelling around the cannula or along your arm,during or after <strong>chemotherapy</strong>, let your nurse ordoctor know immediately.Central lines, PICC lines and implantable portsThese are used to take blood as well as to give you<strong>chemotherapy</strong> and are designed to stay in until your courseof <strong>chemotherapy</strong> is over. This means you won’t need a cannulaor needles put into the veins in your arm every time you have<strong>chemotherapy</strong>. You can also have antibiotics, fluids or a bloodtransfusion through your line or port.Your specialist nurse will explain how the line or port will beput in. Once it’s in place the nurses will show you how to lookafter your line or port (see page 32).26


How <strong>chemotherapy</strong> is givenWhen your course of treatment is over the line or port will betaken out. A doctor or nurse will do this for you, usually in theoutpatients department.Many people won’t need to have a line or a port – it dependson the <strong>chemotherapy</strong> treatment you’re having. They can alsobe used if there are problems with the veins in your arm,or if you’re very anxious about having needles put in.Central lineA central line is a long, thin, hollow tube that is inserted intoa vein in your chest. They’re sometimes called skin-tunnelledcentral venous catheters. But you may hear them called bythe brand names of commonly used central lines, such asHickman ® or Groshong ® lines.How it’s put inYour central line will be put in at the hospital by a doctor orspecially trained nurse. You’ll usually have it done under alocal anaesthetic, but sometimes a general anaesthetic is used.Before the procedure, you’ll have your neck checked for asuitable vein using a small ultrasound machine.Your doctor makes a small cut in the skin near your collarboneand gently threads the tip of the line into a large vein just aboveyour heart.The other end of the line is tunnelled under the skin to reachthe site where it comes out of your body (exit site). You’ll havea chest x-ray to make sure it’s in the right position.27


<strong>Understanding</strong> <strong>chemotherapy</strong>Around the central line there’s a small ‘cuff’ you can feel justunder the skin. The tissue under your skin grows around thiscuff over about three weeks and holds the line safely in place.Until this happens you’ll have a stitch holding the line in place.1 Central lineinserted intochest here2 Line tunnelledunder skin3 Line comesout hereThe heartA central lineWe have a fact sheet about central lines thatwe can send you.28


How <strong>chemotherapy</strong> is givenPICC (peripherally inserted centralvenous catheter) lineA PICC line is a long, thin, hollow tube that your doctor putsinto a vein near the bend in your elbow. You’ll be given alocal anaesthetic to numb the area before the line is put in.The doctor gently threads it along the vein until the tip sits ina large vein in your chest. The end of the line comes out justbelow the crook of your elbow. Once it’s in place, the PICCline is taped firmly to your arm to prevent it being pulled outof the vein.The line isthreaded throughthe vein untilthe end is nearyour heartThe heartLine comesout hereA PICC line29


<strong>Understanding</strong> <strong>chemotherapy</strong>The end of the PICC line comes out just below the crook of your elbowImplantable port (portacath)An implantable port is a thin, soft plastic tube with a rubberdisc (port) at the end. It can be put in under a general or localanaesthetic. The tube is inserted into a vein until its tip sitsjust above your heart and the port lies under the skin on yourupper chest. Once it’s in place you can feel and see the port asa small bump underneath the skin of your chest, but nothingshows on the outside of your body.30


How <strong>chemotherapy</strong> is givenTo use the portacath, a needle is passed through your skin intothe port to give medicines into the vein or take blood. The skinover the port can be numbed with an anaesthetic cream firstso you don’t feel any discomfort.SyringeTubingSkinHuberneedlePortCatheterWe have a fact sheet about implantable portsthat we can send you.An implantable port31


<strong>Understanding</strong> <strong>chemotherapy</strong>Looking after your line or portBefore you go home, the nurses will show you how to lookafter your line or port. If you find this difficult, your nurse willarrange a district nurse to do it or they will show a relative orfriend how to do it for you.The main things to do are to:• flush the line or port with a small amount of fluid usinga syringe to keep it working and stop it from getting blocked• clean the area around the line to reduce the risk of infection• keep the area dry when you have a shower or bath –your nurse will give you waterproof covers• recognise if there’s a problem with your line or port andto contact your nurse or doctor at the hospital for advice.What to look out forMost people won’t have any serious problems with their centralline or port, but possible problems can include blockage andinfection. Your nurse will go over this with you.32


How <strong>chemotherapy</strong> is givenContact the hospital for advice straight away if you have:• soreness, redness or darkening of the skin around theline or port• fluid leaking from the skin around the line or port• swelling of your arm, chest, neck or shoulder• pain in your chest, arm or neck• feeling ‘shivery’ or unwell after your line or port hasbeen flushed• a high temperature. Most hospitals say that a temperatureabove 38°C (100.4°F) is high, but some use a lower orhigher temperature. The cancer doctors and nurses atyour hospital will advise you on this.We have fact sheets about central and PICC linesthat we can send you.33


<strong>Understanding</strong> <strong>chemotherapy</strong>34


How <strong>chemotherapy</strong> is givenHaving intravenous <strong>chemotherapy</strong>Chemotherapy drugs given into a vein (intravenously)can be delivered in different ways.As an injectionThe <strong>chemotherapy</strong> drugs are injected directly into a veinthrough your cannula or central line over a few minutes.Sometimes a bag of clear fluid is attached to plastictubing and connected to the cannula or line in your veinfirst (called a drip or infusion). The drug is injected intoa connection or tap on the plastic tubing and flushedinto your vein with fluid from the bag.Chemotherapy being given by injection into a cannula35


<strong>Understanding</strong> <strong>chemotherapy</strong>A drip through a pumpThe <strong>chemotherapy</strong> drugs are dissolved in a bag of fluid andgiven to you as a drip that runs through an infusion pump.The nurses set the pump to give you a controlled amountof <strong>chemotherapy</strong> over a fixed time. This can be from 20minutes to several hours depending on the <strong>chemotherapy</strong>you’re having.A drip on its ownSometimes <strong>chemotherapy</strong> is given through a drip withouta pump. The nurses set the rate and check it regularly tomake sure it’s at the right speed.Through a small pumpSome types of <strong>chemotherapy</strong> are given over a few days andare set up at the hospital so you can go home with it. A nurseputs the <strong>chemotherapy</strong> into a small pump and connects it toyour central or PICC line. The pump is small enough to fitinto a pocket, or can be carried in a bag or belt holster.You, and sometimes a relative or friend, will be taught howto look after it. Some pumps are battery-operated so youneed to be careful not to get them wet when you’re washing.There are also disposable pumps that are operated by aballoon mechanism or spring control.Your nurse or pharmacist will explain how to look after thepump and who to contact if you have any problems.When the infusion is finished there may some fluid left in thepump. Some pumps need to be overfilled to get the correctdose so this may be normal. Your nurse or pharmacist cantell you if you should expect this.36


How <strong>chemotherapy</strong> is givenIf a <strong>chemotherapy</strong> drug leaksIf a drug leaks into the area around the vein while being given,it’s called extravasation. This is uncommon but can happen if acannula dislodges so that it isn’t correctly positioned in the vein.It rarely happens with a central line.Your nurse will be very careful to prevent extravasationwhen giving your <strong>chemotherapy</strong>. If you notice any swelling,pain, stinging or redness during your treatment session tellthem immediately. Or, if any of these problems developafter you get home, contact the hospital straight away.Some <strong>chemotherapy</strong> drugs can damage the tissues, and it’simportant that extravasation is dealt with straight away.See page 41 for what to do if <strong>chemotherapy</strong> leaks out ofa pump.Other ways of giving <strong>chemotherapy</strong>This section is about other ways <strong>chemotherapy</strong> can be given(apart from intravenously). Your <strong>chemotherapy</strong> nurse or cancerdoctor will explain more about this.By mouthSome <strong>chemotherapy</strong> drugs are taken as tablets or capsules.This is just as effective as other types of <strong>chemotherapy</strong>.The drug is absorbed into your blood and carried aroundyour body just like intravenous <strong>chemotherapy</strong>.You’ll be told when to take your <strong>chemotherapy</strong> tabletsor capsules and given other instructions, such as whetheror not to take them with food.37


<strong>Understanding</strong> <strong>chemotherapy</strong>It’s very important to:• read the labels on the boxes before you leave thehospital and if instructions are unclear, ask your nurse,doctor or pharmacist• take your drugs exactly as prescribed because not takingthem at the right times can affect how well treatment works• contact your nurse or doctor at the hospital immediatelyfor advice if you can’t take your medicines for any reasonor are sick after taking them.Chemotherapy by mouth can cause side effects, just like<strong>chemotherapy</strong> into a vein, and it’s important to know whatthey are. You also need to know how to store your drugssafely. You can read more about having <strong>chemotherapy</strong> athome on page 41.Injection into a muscle or skinSome <strong>chemotherapy</strong> drugs are given by injection into a muscle(intramuscular) of the leg or buttock. This might feel a bitpainful or uncomfortable for a short time.Some drugs are given by injection under the skin (subcutaneous)using a very fine needle.Injection into the spinal fluid (intrathecal)In some leukaemias, lymphomas or some brain tumours cancercells can pass into the fluid surrounding the brain and spinalcord (cerebrospinal fluid or CSF).38


How <strong>chemotherapy</strong> is givenIntrathecal <strong>chemotherapy</strong> can be used to destroy these cancercells or to try and prevent this from happening. Chemotherapyinto a vein or by mouth can’t reach these cancer cells.Your cancer doctor and nurse will explain it all so you knowwhat to expect. They’ll make sure you’re comfortable, and youcan have a relative or friend with you.The doctor numbs an area of skin over your spine with localanaesthetic. After a few minutes they will gently insert a needlebetween two of the spinal bones into the CSF (called a lumbarpuncture). Your doctor then injects the <strong>chemotherapy</strong> throughthe needle into the CSF.The most common side effect of a lumbar puncture is aheadache. To help prevent this, you need to lie flat for afew hours afterwards and drink plenty of fluids.We have a fact sheet about intrathecal <strong>chemotherapy</strong>and lumbar punctures.Into a body space (intracavitary)Chemotherapy drugs can be given into a space (cavity) inthe body, such as the bladder. This can cause irritation orinflammation in the area the drugs are given but it doesn’tusually cause side effects in other parts of the body.A fine tube (catheter) is usually inserted into the body cavityand <strong>chemotherapy</strong> is put in through this tube. It may bedrained out again after a set period of time.39


<strong>Understanding</strong> <strong>chemotherapy</strong>Into the bladder This may be done to treat early bladdercancer. Liquid <strong>chemotherapy</strong> drugs are given directly into thebladder through a catheter, which is removed when it’s over.Our booklet <strong>Understanding</strong> early (superficial) bladder cancerhas more information.Into the abdominal cavity (intraperitoneal <strong>chemotherapy</strong>)This is very occasionally used to treat ovarian cancer andthere’s more information in our booklet <strong>Understanding</strong> cancerof the ovary. It may also be used to treat mesothelioma in theabdomen (peritoneal mesothelioma).Between the two layers of the pleura (tissue that coversthe outside of the lungs) Chemotherapy is sometimes putin between the two layers of the pleura to treat cancer cellsthat have spread there.Into a limb (isolated limb perfusion) Chemotherapy isvery occasionally given directly into the blood vessels in a limb.This is to treat a skin cancer called melanoma that has comeback. We have a fact sheet about this type of treatment.Chemotherapy creamsChemotherapy creams are used to treat some types of skincancer. You put the cream on the affected skin in a thin layerand cover the area with a dressing. Your specialist nurse orpharmacist will show you how to do this and will explain howoften you need to apply the cream. Although the cream canirritate the skin in the area or make it sore, it won’t cause sideeffects in other parts of the body.40


How <strong>chemotherapy</strong> is givenChemotherapy at homeIf you’re having <strong>chemotherapy</strong> at home as tablets or througha pump, there are certain things to remember:• Chemotherapy tablets, capsules or injections mayneed to be stored in a particular way, such as in thefridge. Always follow the instructions given by your nurseor pharmacist.• Other people in your household should avoid direct contactwith your <strong>chemotherapy</strong> drugs and avoid picking them upwith bare hands.• All drugs must be stored out of the reach of children asthey could cause serious harm if taken by accident.• If you’re having intravenous <strong>chemotherapy</strong> by pumpand you notice the drug leaking from the pump or tube,you should close the clamps on the pump, wrap it in aplastic bag and wash your hands. Some hospitals providea ‘spill’ or ‘leakage’ kit, which includes instructions on whatto do if your pump leaks. You should then contact the nurseor doctor at the hospital immediately.• If you feel unwell at any time, contact the hospital straightaway on the contact number you’ve been given (day or night)for advice.41


<strong>Understanding</strong> <strong>chemotherapy</strong>Possible side effectsThe side effects you get will depend on the <strong>chemotherapy</strong>drugs you’re having. Different drugs cause different sideeffects. Some side effects are mild and easily treated.Others can be harder to manage but can often be reducedor helped in some way.Most side effects are short term and usually stop or graduallygo away when <strong>chemotherapy</strong> is over. Although the side effectscan be unpleasant, the benefits of <strong>chemotherapy</strong> usuallyoutweigh this.If you’re having a single drug you won’t usually have asmany side effects as someone having a combination of drugs.People having high doses of <strong>chemotherapy</strong> and who need tostay in hospital may have more complex side effects.Your cancer doctor and nurse specialist will explain the sideeffects that your <strong>chemotherapy</strong> is likely to cause.Always tell your doctor or nurse about any sideeffects. They can usually prescribe medicinesto reduce them or change medicines you’realready taking to more effective ones.The main areas of your body that may be affected by<strong>chemotherapy</strong> are where there’s a high turnover of normalcells, such as the:• bone marrow (where blood cells are made)• digestive system42


Possible side effects• lining of your mouth• hair follicles (where hair grows from).We can send you information about the differentside effects of <strong>chemotherapy</strong>.Your bone marrow and bloodChemotherapy can reduce the number of blood cells madeby the bone marrow. Bone marrow is a spongy material that’sfound in the middle of your bones. It makes special cells calledstem cells that develop into the different types of blood cells:• red blood cells, which carry oxygen to all parts of the body• white blood cells, which fight and prevent infection• platelets, which help the blood to clot and prevent bleedingand bruising.You’ll have regular blood samples taken to check the numberof these cells in your blood (called a full blood count).Risk of infectionIf the number of your white blood cells is low, you’re morelikely to get an infection. The main white blood cells thatfight bacteria are called neutrophils. When they are low youare neutropenic.Your resistance to infection is usually at its lowest 7–14 daysafter <strong>chemotherapy</strong>. The number of your white blood cells willthen increase steadily and usually return to normal before yournext cycle of <strong>chemotherapy</strong> is due.43


<strong>Understanding</strong> <strong>chemotherapy</strong>Helpful hints – avoiding infection• Keep clean and always wash your hands thoroughly afterusing the toilet and before preparing food.• Stay away from crowded places and from people who youknow have an infection, such as a cold.• Make sure your food is thoroughly cooked, and ask yournurse if there are any foods you should avoid.We have a fact sheet about avoiding infection whenyour immunity is low, which we can send you.InfectionDeveloping an infection when your white blood cell count is lowcan sometimes be a serious complication of <strong>chemotherapy</strong>.Although this may sound scary, most people don’t haveany serious problems with infection. Some <strong>chemotherapy</strong>treatments are more likely than others to reduce your whiteblood cell count.But even a mild infection can delay your <strong>chemotherapy</strong>treatment. Your doctor may wait until the infection has clearedand for your blood count to go back up before you continue.Your <strong>chemotherapy</strong> nurse will talk to you about infection andshow you how to check your temperature. Most hospitalsconsider a temperature above 38°C (100.4°F) to be high,although some hospitals use a lower temperature.44


Possible side effectsYou can have an infection without showing a high temperature.Drugs, such as paracetamol, lower your temperature so theycan hide or ‘mask’ an infection.Always contact the hospital on the 24-hour contact numbersyou’ve been given (see page 23) and speak to a nurse ordoctor if:• your temperature goes above 38°C (100.4°F) or a lowertemperature if that’s the advice you’ve been given• you suddenly feel unwell, even with a normal temperature• you have any symptoms of an infection such as a cold,sore throat, cough, passing urine frequently (urine infection),diarrhoea or feeling shivery and shaking.Chemotherapy units usually have a policy they followwhen someone with low white blood cells has an infection.This is to make sure you get treatment with antibiotics straightaway to prevent complications.Some people may have to stay in hospital to have antibioticsgiven into a vein (intravenously). After a few days you canusually have them as capsules or tablets to take at home.G-CSFThis drug is sometimes used after <strong>chemotherapy</strong> to help yourbone marrow make white blood cells more quickly and reducethe risk of infection.We have a fact sheet about G-CSF.45


<strong>Understanding</strong> <strong>chemotherapy</strong>Anaemia (reduced number of red blood cells)If <strong>chemotherapy</strong> reduces the number of red blood cells inyour blood, you may become very tired and feel you haveno energy. You may also become breathless, and feel dizzyand light-headed. These symptoms happen because thered blood cells contain haemoglobin, which carries oxygenaround the body.If your haemoglobin is low you may be offered a bloodtransfusion. You’ll feel more energetic and any breathlessnesswill be eased.We have a fact sheet about blood transfusions.Increased bleeding and bruisingIf the number of platelets in your blood is reduced, you maybruise very easily or bleed more than usual from minor cutsor grazes.Tell your hospital doctor or nurse about this and contactthem straight away if you notice or have:• nosebleeds• bleeding gums• tiny red or purple spots on the skin (petechiae) thatsometimes cluster to make a rash.46


Possible side effectsHelpful hints – avoiding injuriesIf your platelets are low you’ll need to be careful toavoid injuries.• Wear protective gloves when doing anything aroundthe house or in the garden.• Be careful to avoid bumping into things or tripping.• Use a soft toothbrush to protect your gums from bleedingand don’t floss.Some people may need a platelet transfusion. This is given bydrip (infusion) as a day patient. The platelets will start workingimmediately to prevent bruising and bleeding.We can send you a fact sheet aboutplatelet transfusions.Increased risk of blood clots<strong>Cancer</strong> can increase your risk of developing a blood clot(thrombosis), and having <strong>chemotherapy</strong> may increase thisrisk further. A blood clot may cause symptoms such as pain,redness and swelling in a leg, or breathlessness and chest pain.Blood clots can be very serious so it’s important to tell yourdoctor straight away if you have any of these symptoms.However, most clots can usually be successfully treated withdrugs to thin the blood. Your doctor or nurse can give youmore information about blood clots.47


<strong>Understanding</strong> <strong>chemotherapy</strong>Your hairYour doctor or specialist nurse will tell you if the <strong>chemotherapy</strong>is likely to cause hair loss. Knowing what to expect gives youtime to prepare and find ways of coping.Some drugs don’t make your hair fall out but can make itthinner. You might notice your hair becomes dry and brittleand breaks easily. Looking after the condition of your haircan make it less likely to break off.Helpful hints – looking after your hair• Use gentle hair products, pat hair dry after washing itand gently brush with a wide-toothed comb.• Avoid using hairdryers, straighteners, tongs or curlers.• Don’t perm or colour your hair if it’s brittle or your scalpis dry – if you do want to do this, make sure you getprofessional advice first.• If you want to colour your hair, use a mild vegetable-basedcolourant (do a strand test first), and ask your hairdresserfor advice.Scalp coolingSome people having certain types of <strong>chemotherapy</strong> may beable to prevent hair loss by using a ‘cold cap’. This works bytemporarily reducing the blood flow and the amount of thedrug reaching the scalp. But the cold cap only works withcertain drugs and doesn’t always prevent hair loss. You canask your doctor or nurse whether one would be useful for you.48


Possible side effectsLosing your hairSome <strong>chemotherapy</strong> drugs cause all or most of your hairto fall out, which can be very upsetting. There are lots ofways you can cover up, if you choose to, such as using wigs,hats, turbans, scarves or bandanas.Hair loss usually starts within a few weeks of starting<strong>chemotherapy</strong> or, very occasionally, within a few days.You usually notice your hair coming out more when youbrush, comb or wash it, and you may find hair on yourpillow in the mornings.You may lose underarm, body and pubic hair as well.Some <strong>chemotherapy</strong> drugs also make the eyelashesand eyebrows fall out.Your hair will usually grow back over a few months once you’vefinished treatment. It will be very fine at first and may be aslightly different colour or texture than before. You’ll probablyhave a full head of hair after 3–6 months. To begin with,you should try to look after the condition of your hair(see our helpful tips below).Helpful hints – hair loss• Cutting hair short before <strong>chemotherapy</strong> can stop the weightof long hair pulling on the scalp, which can make hair fallout earlier.• Wearing a hairnet, soft cap or turban at night stops yourhair becoming tangled and helps to collect loose hair.• You can ask your own hairdresser to cut and style yourwig for you.49


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Possible side effectsWigsYou’re entitled to a free wig if you’re an inpatient when yourwig is fitted, or if you, or your partner, is claiming:• the Guarantee Credit part of Pension Credit• income-based Jobseeker’s Allowance• Disability Working Allowance, or• Income-related Employment and Support Allowance.If you’re not entitled to a free wig, you can get one fromthe NHS at a subsidised price.Our booklet Coping with hair loss has moreinformation and helpful advice.‘I thought a wig was a thing that you puton your head and it was all hot and horrible.But there was lots of choice and she wasbrilliant, and she cut it and styled it tosuit me.’Medha51


<strong>Understanding</strong> <strong>chemotherapy</strong>Your digestive systemYour digestive system (stomach and bowels) can be affectedin different ways by <strong>chemotherapy</strong>.Feeling sick and vomitingSome <strong>chemotherapy</strong> drugs can make you feel sick (nauseous),or be sick (vomit). Not all drugs cause sickness and manypeople have no sickness at all.‘When I was having my chemo I hadlots of ginger ale and always had mintsin my handbag.’JanetThere are very effective treatments to prevent andcontrol sickness.Anti-sickness drugs If your <strong>chemotherapy</strong> is known to causesickness, you’ll be given anti-sickness drugs by injection or astablets before your <strong>chemotherapy</strong>. You’ll also be given tabletsto take at home afterwards. You should take these regularly,even if you don’t feel sick, and exactly as your doctor hasprescribed them. It’s easier to prevent sickness than to treat itonce it’s started.Contact your doctor or nurse at the hospital if:• the anti-sickness drugs don’t stop you feeling or being sick –other more effective drugs can be prescribed• you’re being sick and aren’t able to drink enough fluids.52


Possible side effectsIf you can’t keep down tablets, your doctor can prescribeinjections or suppositories to take until the sickness is controlled.Our fact sheet about controlling nausea and vomitinghas more information.Try to have a small meal a few hours before <strong>chemotherapy</strong>but not just before it. If you’re managing to eat well in betweentreatments, don’t worry if you can’t eat much for a couple ofdays after <strong>chemotherapy</strong>.Helpful hints – feeling sick• If possible, let someone else cook or prepare food for you.• Eat cold or frozen foods that only need heating up(defrost thoroughly), if the smell of cooking bothers you.• Avoid fried, fatty foods or foods with a strong smell.• Try eating dry food, such as toast or crackers, first thing inthe morning.• Ginger can help reduce feeling of sickness – try crystallisedginger, ginger tea or ginger biscuits.• Sipping a fizzy drink can help – try mineral water,ginger beer or ale, lemonade or soda water and sipslowly through a straw.Some complementary therapies (page 79), such asacupuncture, may help but ask your cancer doctor first.Some people find Sea-bands ® helpful. They use acupressureto help relieve nausea and are available from chemists.53


<strong>Understanding</strong> <strong>chemotherapy</strong>DiarrhoeaSome <strong>chemotherapy</strong> drugs can cause diarrhoea, usually in thefirst few days. Let your nurse or doctor know if this happens asthey can prescribe medicine to reduce this.Make sure you drink plenty of liquid (up to two litres a day)to replace fluid you’re losing with diarrhoea. Eat less fibre(cereals, raw vegetables and fruits) until the diarrhoea improves.Sometimes diarrhoea can be more severe, and it’s importantto contact the hospital if this happens. If you have more than4–6 episodes of diarrhoea a day, contact the hospital on thetelephone numbers you’ve been given and speak to a doctoror nurse.ConstipationSome <strong>chemotherapy</strong> drugs and also anti-sickness drugs andpainkillers can cause constipation. Let your nurse or doctorknow if this happens so they can prescribe drugs to prevent ortreat it.Try to eat more fibre (cereals, raw vegetables and fruits)and drink plenty of liquid. Gentle exercise, such as short walks,can help to improve constipation.Loss of appetiteChemotherapy can affect your appetite. If you have apoor appetite try to eat little amounts as often as possible.Keep snacks, such as nuts, grated cheese or dried fruit,handy to eat whenever you can.It’s important to try to eat well during your treatment. If you’rehaving problems ask your nurse for advice and you can alsoask to see a dietitian.54


Possible side effectsYou can add extra energy and protein to your diet witheveryday foods or by using food supplements. Our bookletThe building-up diet has more information.Taste changesChemotherapy can affect your sense of taste. You mightfind food tastes more salty, bitter or metallic. This will returnto normal after <strong>chemotherapy</strong> finishes.Helpful hints – changes to sense of taste• Use seasoning, spices and herbs to flavour cooking.• Try marinating food or use strong-flavoured sauces.• Sharp-tasting fresh fruit/juices or boiled sweets canleave a pleasant taste in the mouth.• You might find cold foods taste better than hot foods.Our booklet Eating problems and cancerhas more information.Mouth problemsChemotherapy can cause different mouth problems, such asa sore mouth, mouth ulcers or infection. Your <strong>chemotherapy</strong>nurse will explain how to look after your mouth to reduce therisk of problems.55


<strong>Understanding</strong> <strong>chemotherapy</strong>Some <strong>chemotherapy</strong> drugs can make your mouth sore andyou may get mouth ulcers about 5–10 days after they’re given.Mouth ulcers can become infected or you may develop aninfection in your mouth.The most common mouth infection is called thrush(or candidiasis). It shows as white spots on your mouthand tongue, or your tongue and mouth lining become redand swollen. Thrush is treated with anti-fungal tablets.Some people are prescribed these tablets to prevent thrush.Always let your doctor or <strong>chemotherapy</strong> nurse know if you havemouth ulcers, or any problems with your mouth. They can giveyou mouthwashes, medicines and gels to heal ulcers and clearor prevent any infection.It’s a good idea to see your dentist before you start treatment.Dental treatment may need to be delayed during <strong>chemotherapy</strong>because of the risk of infection and a sore mouth.We have a fact sheet about mouth care during<strong>chemotherapy</strong> with more detailed information.Call 0808 808 00 00 for a free copy.Taking care of your mouth• Clean your teeth or dentures gently every morning,evening and after meals using a soft-bristled or children’stoothbrush and rinse your mouth regularly with salt water.• If your toothpaste stings or brushing your teeth makesyou feel sick, try using a mouthwash of one teaspoonof bicarbonate of soda dissolved in a pint (570mls)of warm water.56


Possible side effects• If your doctor prescribes a mouthwash for you,use it regularly as prescribed to prevent soreness.• Gently use dental tape or floss once a day (unless youhave low platelets).• Keep your lips moist by using Vaseline ® or a lip balm.A sore mouth or ulcers can make eating and drinkinguncomfortable. These tips may help you:• Add gravies and sauces to your food to keep yourmouth moist and make swallowing easier.• Try to drink at least 3 pints (1.5 litres) of fluid a day(water, tea, weak coffee and soft drinks).• Avoid hot spices, garlic, onion, vinegar and salty food.• Avoid neat spirits, tobacco and acidic drinks (orange andgrapefruit juice).TirednessSome people feel very tired during <strong>chemotherapy</strong>. This isnormal. It can be very frustrating and difficult to cope with,especially for people who normally have a lot of energy.The hardest time may be towards the end of the courseof <strong>chemotherapy</strong>.Managing tirednessTry to cut down on things you don’t really need to do.Ask family and friends, who are often keen to help inany way they can, to help with tasks such as shopping,household jobs or gardening.57


<strong>Understanding</strong> <strong>chemotherapy</strong>If you have children, ask for help looking after them whenyou have <strong>chemotherapy</strong> and for a couple of days after.Some people may need extra childcare help and a socialworker can usually arrange this for you. We have a factsheet about childcare that we can send you.Make sure you get plenty of rest. But try to take some gentleexercise, such as short walks or more if you feel up to it,as well. This will give you more energy and helps to keepsome of your muscles working.Some people choose to, or need to, carry on working during<strong>chemotherapy</strong>. Most employers will reduce your hours andchange work duties to make things easier for you.If you’re having difficulty sleeping, we have a fact sheetabout managing sleep problems.The tiredness will get easier when <strong>chemotherapy</strong> is over.But it can be three or four months until you feel back tonormal. Some people find that they still feel tired a yearor so afterwards.Our booklet Coping with fatigue has helpful tipson dealing with tiredness during <strong>chemotherapy</strong>.Skin and nail changesYour skinSome drugs can affect your skin. It may become dry or slightlydiscoloured. Chlorine in swimming pools can make this worse.Your skin may also be more sensitive to sunlight, during andafter treatment.58


Possible side effectsTell your cancer doctor or nurse if you develop any skinchanges or rashes.Helpful hints – skin changes• Avoid wet shaving – an electric razor is less likely tocause cuts.• Use moisturising cream if your skin is dry or itchy,but check with your nurse before using creams if you’realso having radiotherapy.• If you’re out in the sun wear a high-factor suncream(at least SPF 30) on exposed areas.Your nailsChemotherapy may make your nails grow more slowly orbecome brittle or flaky. You may notice white lines appearingacross them, or changes in the shape or colour of your nails.They should go back to normal after <strong>chemotherapy</strong>.Protect your nails and hands by keeping them well moisturised.Wear gloves to protect them when doing chores in the houseor garden. It’s fine to wear nail varnish but don’t use falsenails during <strong>chemotherapy</strong>. If your toenails are affected,wear well-fitted shoes to cushion them.Other possible side effectsEffects on the nervesSome <strong>chemotherapy</strong> drugs can affect the nerves in yourhands or feet. This can cause tingling or numbness, or asensation of pins and needles (called peripheral neuropathy).59


<strong>Understanding</strong> <strong>chemotherapy</strong>It’s important to let your doctor know if this happens.They may need to change the <strong>chemotherapy</strong> drug if it getsworse. Usually, peripheral neuropathy gradually gets betterwhen <strong>chemotherapy</strong> is over but sometimes it’s permanent.We have a fact sheet about peripheral neuropathy.Effects on the nervous systemSome drugs can make you feel anxious, restless, dizzy,sleepy or have headaches. If you have any of these,it’s important to let your cancer doctor or nurses know.They may be able to prescribe medicines that can helpwith some of these effects.Some cancer treatments, such as <strong>chemotherapy</strong>,can cause changes in memory or concentration duringand/or after treatment. Doctors sometimes call this mildcognitive impairment (MCI), but it’s more usually knownas ‘chemo-brain’ or ‘chemo-fog’.If this happens it’s usually mild. There are useful ways ofmanaging it, such as using lists, post-it notes, calendarsand your mobile phone for reminders. Doing some mentalexercises, eating well, and getting enough rest can also help.There’s more information about this in ourfact sheet about mild cognitive impairment.60


Possible side effectsChanges in how your kidneys workSome <strong>chemotherapy</strong> drugs can affect how well your kidneyswork (kidney function).Before each treatment your kidneys will be checked witha blood test. You’ll be given fluid through a drip (infusion),before and after the treatment, to keep your kidneys workingnormally. The nurses may ask you to drink plenty of fluid andto record what you drink and the amount of urine you pass.Changes in hearingSome <strong>chemotherapy</strong> drugs can affect your hearing. You mayhave ringing in the ears (tinnitus) and lose the ability to hearsome high-pitched sounds. Very occasionally your sense ofbalance may be affected. Any hearing loss (and balancechanges if they occur) may be permanent. Tinnitus usuallyimproves when treatment ends.Tell your cancer doctor or nurse if you notice any hearingloss or tinnitus.61


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Changes to your treatment planChanges to yourtreatment planSometimes people may need their <strong>chemotherapy</strong> treatmentplan changed. If this happens, your cancer doctor or nursewill explain why it’s advised in your situation.It may be because of the effects of the <strong>chemotherapy</strong> on yourbody or on the cancer itself. Sometimes changes can be madeto suit your personal circumstances.Effects on your bodyChemotherapy can affect organs, such as the bone marrow,kidneys and liver. You’ll have regular blood tests to monitorthis. Some drugs can affect the nerves in your feet andhands (known as peripheral neuropathy) and others drugsmay affect hearing.Depending on the problem, your doctor may delay your<strong>chemotherapy</strong> for a short while, reduce the dose or putyou on a different <strong>chemotherapy</strong> drug.Delaying your <strong>chemotherapy</strong>The most common reason for delaying <strong>chemotherapy</strong> isthe number of white blood cells in the blood being too low(see pages 43–45). This isn’t unusual so try not to get tooworried about it. Once your white blood cells are backup to a healthy level, you can start your next cycleof <strong>chemotherapy</strong>.63


<strong>Understanding</strong> <strong>chemotherapy</strong>You may be able to delay your <strong>chemotherapy</strong> if you have aspecial social occasion coming up. A small delay won’t usuallybe a problem, but this does depend on the type of cancer youhave. Your cancer doctor or specialist nurse will tell you if thisis advisable.Effects on the cancerYour doctor may arrange tests or a physical examinationto check the effects of <strong>chemotherapy</strong> on the cancer(see page 11).If the results show the cancer isn’t responding well enough,your doctor may change your treatment plan to different<strong>chemotherapy</strong> drugs.64


Late effects of <strong>chemotherapy</strong>Late effects of <strong>chemotherapy</strong>Occasionally, people have late effects of <strong>chemotherapy</strong>.These are side effects you still have six months after<strong>chemotherapy</strong>, or side effects that begin years later.Late effects aren’t common and any risk is outweighedby the benefits of <strong>chemotherapy</strong>.Your cancer doctor or specialist nurse can explain anypossible late effects of your <strong>chemotherapy</strong> treatment.Different drugs cause different late effects. Some drugs maycause an early menopause (see pages 71–72) or infertility(see pages 73–75). Other drugs may cause peripheralneuropathy (see pages 59–60), which is permanent insome people.Second cancerSome <strong>chemotherapy</strong> drugs can increase the risk of developingparticular types of cancer or leukaemia later in life. This is rare,and your doctors will weigh up the small increase in risk of thishappening, against the benefit of the <strong>chemotherapy</strong> in treatingyour cancer.Effects on the heart or lungsSome <strong>chemotherapy</strong> drugs may increase the risk of heartor lung problems later in life. Your doctor can give youmore information about this.65


<strong>Understanding</strong> <strong>chemotherapy</strong>What you can doThere are some things you can do that will help you optimiseyour health.• Regular physical activity is good for your heart and lungs,and it keeps your bones healthy – we have a booklet calledPhysical activity and cancer treatment, which has tips on howto be more active.• Keeping to a healthy weight and eating healthily helpslook after your heart and bones – we have booklets calledHealthy eating and cancer and Weight management aftercancer treatment, which you may find useful.• If you smoke, giving up is the best decision you can makefor your health. Smoking is a major risk for heart and lungproblems and also affects your bone health. Smoking is themain cause of lung cancer and a major risk factor for othercancers. Our booklet Giving up smoking has information andtips to help you quit.66


Effects on everyday lifeEffects on everyday lifeEven though <strong>chemotherapy</strong> treatment can cause unpleasantside effects, some people still manage to lead an almostnormal life during treatment. But this depends on the typeof <strong>chemotherapy</strong> you’re having.Even if you feel unwell after <strong>chemotherapy</strong>, you mayrecover quickly and have time to do the things you usuallydo before your next cycle. If the cancer is causing symptoms,your <strong>chemotherapy</strong> may make you feel better by relieving them.Some people are able to go to work with time off and shorterworking hours (see page 87).Social lifeYou may not be able to do some of the things we usually takefor granted. But, depending on how you feel, there’s no reasonto stop going out or visiting friends if you plan ahead.If you’re going out for the evening, try to rest during the day soyou have more energy at night. If you’re going out for a meal,take anti-sickness tablets – if you need to – before you go.If you have an important social event coming up, ask yourdoctor if your treatment date can be changed so that youfeel as well as possible for the occasion.67


<strong>Understanding</strong> <strong>chemotherapy</strong>AlcoholFor most people, having the occasional alcoholic drinkshouldn’t affect your <strong>chemotherapy</strong> treatment. But it’s bestto check with your doctor or nurse first.Holidays and vaccinationsIf you’re going abroad on holiday, it’s important to rememberthat you should not have any ‘live’ vaccines while you’re having<strong>chemotherapy</strong>. These include:• MMR (the triple vaccine for measles, mumps and rubella)• BCG (tuberculosis)• yellow fever• oral typhoid.There are some vaccines that you can have if necessary.If you’re travelling abroad, ask your doctor if you needany vaccines and whether it’s safe for you to have them.Sometimes people who have, or have had, cancer can findit difficult to get travel insurance.We can send you a booklet about travel and cancerand have a list of travel insurance companies whooffer insurance to people with medical conditionsincluding cancer. This information is also on ourwebsite. Visit macmillan.org.uk/travel68


Effects on sex life and fertilityEffects on sex lifeand fertilityHaving <strong>chemotherapy</strong> can affect your sex life, although noteveryone finds this. Side effects like tiredness, feeling sick orweak can reduce your sex drive and make having sex difficult.Chemotherapy shouldn’t have a long-term effect on yoursex life. The side effects will usually gradually wear off whenyour treatment is finished.Feeling low or anxious can also affect your sex life. The anxietymay not be about sex. You might have worries about thecancer, how your family is coping or about money.We have a booklet called Sexuality and cancer,which has more information.Usually there’s no medical reason to stop having sex during<strong>chemotherapy</strong>. But if you have low platelets, or a low whiteblood cell count, you may be advised to avoid penetrativesex until your blood count improves.It’s not easy to talk about sex, but it can help to talk throughany concerns about your sex life with your doctor or specialistnurse. They can often reassure you and support you withany problems.It’s also important to talk about how you feel with your partner.Cuddling, touching and stroking are good ways of showingyour feelings even if you don’t feel like having sex.69


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Effects on sex life and fertilityProtecting your partnerIt’s not known if <strong>chemotherapy</strong> drugs pass into semen orvaginal fluids. Doctors usually advise you to use condomsfor a few days after <strong>chemotherapy</strong> to protect your partner.Remember that cancer can’t be passed on to your partnerand sex won’t make the cancer worse.ContraceptionIt’s important to use effective contraception during<strong>chemotherapy</strong> to avoid a pregnancy as the drugs mightharm a developing baby. Your doctor or nurse will adviseyou to use reliable contraception during <strong>chemotherapy</strong> andfor a few months afterwards.It’s usually best to use ‘barrier’ methods such as condoms,the cap or the coil (non-hormonal if you have breast cancer).Chemotherapy side effects, such as sickness and diarrhoea,can make the contraceptive pill less effective. If you’re takingit you need to check with your cancer doctor if it’s okay tocontinue using it.Early menopauseIn some women, <strong>chemotherapy</strong> causes an early menopause.This can cause menopausal symptoms like hot flushes,vaginal dryness, anxiety, mood swings and a reduced sexdrive (libido). Your periods will stop and you’ll start themenopause. Doctors usually say early menopause is before 45.71


<strong>Understanding</strong> <strong>chemotherapy</strong>You may be able to have hormone replacement therapy (HRT)to replace the hormones your ovaries are no longer producing.It can improve some symptoms of the menopause and protectyour bones and heart. Early menopause can increase the riskof bone thinning (osteoporosis).But some cancers, for example breast cancer and wombcancer, depend on hormones to grow so your specialistmay not advise HRT. We have a fact sheet about managingmenopausal symptoms for women with breast cancer.If you’ve had early menopause because of <strong>chemotherapy</strong>,ask your cancer specialist if HRT is suitable for you.Managing menopausal symptomsIf HRT isn’t advised or if you don’t want to take it, thereare different ways that symptoms can be managed. If yoursymptoms are affecting your day-to-day life, ask yourdoctor about other medicines that may help withmenopausal symptoms.Low doses of anti-depressant drugs, or a drug called Clonidine(Catapres ® , Dixarit ® ) used to control blood pressure, can reducehot flushes and sweats. Some women find that using a slow,controlled breathing technique, yoga or acupuncture mayhelp with flushes. Different lubricants or creams can be usedto help reduce discomfort from vaginal dryness during sex.Our booklet on sexuality has more information.The Daisy Network is a support organisation forwomen who have early menopause (see page 97for contact details). You can also contact our cancersupport specialists on freephone 0808 808 00 00if you’d like more information.72


Effects on sex life and fertilityEffects on fertilityUnfortunately, some <strong>chemotherapy</strong> drugs can cause infertility(inability to become pregnant or to father a child).It’s important to discuss your infertility risk with your cancerdoctor before you start <strong>chemotherapy</strong>. If you have a partner,it’s a good idea to include them in this discussion.Although <strong>chemotherapy</strong> can affect fertility, it’s still possiblefor a woman to get pregnant or for a man to get his partnerpregnant during <strong>chemotherapy</strong>. It’s important to avoidpregnancy when you’re having <strong>chemotherapy</strong> as the drugscould harm a developing baby (see pages 75–76).WomenSome, but not all, <strong>chemotherapy</strong> drugs may temporarilyor permanently stop your ovaries producing eggs.Chemotherapy may cause your periods to become irregular orstop for a while (temporary infertility). But after treatment stops,the ovaries can start producing eggs again and your periodswill return to normal. It may take a few months or up to twoyears for your periods to come back. The younger you are,the more likely you are to have periods again and still befertile after <strong>chemotherapy</strong>.If your periods don’t come back you won’t be able to becomepregnant and will have your menopause (see pages 71–72).It’s important to know if your fertility is likely to be affectedbefore <strong>chemotherapy</strong> starts. You can then decide if you want73


<strong>Understanding</strong> <strong>chemotherapy</strong>to be referred to a fertility specialist. They can discuss possibleoptions to help preserve your fertility, such as storing embryos(fertilised eggs) or eggs, with you.We have a leaflet <strong>Cancer</strong> treatment and fertility –information for women, which has more information.MenSome <strong>chemotherapy</strong> drugs have no effect on fertility, but otherscan slow down or stop you producing sperm. For most men thiswill be temporary. Any problems with sperm production won’tstop you from getting an erection or enjoying sex.Even if your chances of becoming infertile are low, you maystill be advised to store sperm for use in the future. This hasto be done before you start <strong>chemotherapy</strong>. Teenage boys atrisk of infertility should also, if possible, have their spermstored for later years.You’ll usually be asked to produce several sperm samplesover one or two weeks. These will be frozen and stored sothey can be used later to try to fertilise an egg and makeyour partner pregnant.It can take a few years for your sperm count to go backto normal after <strong>chemotherapy</strong>. Unfortunately in some meninfertility is permanent. Your doctor can check your spermcount after treatment is over.There’s more detailed information in our leaflet<strong>Cancer</strong> treatment and fertility – information for men.74


Effects on sex life and fertilityFeelings about infertilityIf you had been planning to have children in the future orto have more children, infertility can be very hard to cometo terms with.You may find it helpful to talk about your feelings with atrained counsellor or therapist specialised in fertility problems.Your doctor or specialist nurse may be able to arrange this oryou can contact the organisations on pages 96–99 for moreinformation. Our cancer support specialists on freephone0808 808 00 00 can also provide support.Pregnancy and <strong>chemotherapy</strong>It isn’t a common situation to be pregnant and need<strong>chemotherapy</strong>. But if you are, or discover you’re pregnantduring <strong>chemotherapy</strong>, you and your partner will needcareful discussions with your doctor.Your cancer doctor will advise you about any possible risksto the baby (from <strong>chemotherapy</strong>) and how being pregnantmay affect your cancer treatment plan.It is sometimes possible to delay <strong>chemotherapy</strong> untilafter a baby is born, or to give it later in the pregnancy.This will depend on the type of cancer you have, it’s stage,the <strong>chemotherapy</strong> drugs you need, and how many monthspregnant you are. Your cancer doctor will explain if theseare options in your situation.75


<strong>Understanding</strong> <strong>chemotherapy</strong>This can be a difficult and distressing time, especially if itinvolves making decisions about continuing with the pregnancy.You’ll need time to take in the information you’ve been given,and to talk it over with your partner and family. Your specialistnurse and your cancer doctor are also there to help supportyou. If you need more specialised support they can refer you toa counsellor. You can also talk to our cancer support specialistson 0808 808 00 00.Breastfeeding and <strong>chemotherapy</strong>Breastfeeding during <strong>chemotherapy</strong> is not advised as the drugscould be passed on to a baby through breast milk. If you wantto give your baby breast milk during <strong>chemotherapy</strong>, you may beable to express extra milk before treatment starts and freeze it.You may be able to express milk, which you cannot keepor use, throughout your <strong>chemotherapy</strong> so that you’re stillproducing milk when <strong>chemotherapy</strong> finishes. You may thenbe able to start breastfeeding after <strong>chemotherapy</strong>. But thiswill depend on whether you’re having any other treatmentthat could interfere with breastfeeding.Your cancer doctor and specialist nurse will advise you if this ispossible and if so when it’s safe to start. Having <strong>chemotherapy</strong>won’t affect your ability to produce breast milk in the future.76


Research – clinical trialsResearch – clinical trials<strong>Cancer</strong> research trials are carried out to try to find newand better treatments for cancer. Trials that are carriedout on patients are known as clinical trials. These may becarried out to:• test new treatments, such as new <strong>chemotherapy</strong> drugs,gene therapy or cancer vaccines• look at new combinations of existing treatments, or changethe way they are given, to make them more effective or toreduce side effects• compare the effectiveness of drugs used to control symptoms• find out how cancer treatments work• see which treatments are the most cost-effective.Trials are the only reliable way to find out if a differentoperation, type of <strong>chemotherapy</strong>, radiotherapy or othertreatment is better than what is already available.Taking part in a trialYou may be asked to take part in a treatment research trial.There can be many benefits in doing this. Trials help toimprove knowledge about cancer and develop new treatments.You will be carefully monitored during and after the study.Usually, several hospitals around the country take part inthese trials. It’s important to bear in mind that some treatmentsthat look promising at first are often later found not to be77


<strong>Understanding</strong> <strong>chemotherapy</strong>as good as existing treatments, or to have side effects thatoutweigh the benefits.If you decide not to take part in a trial, your decision will berespected and you don’t have to give a reason. However,it can help to let the staff know your concerns so that theycan give you the best advice. There will be no change in theway that you’re treated by the hospital staff, and you’ll beoffered the standard treatment for your situation.Our booklet, <strong>Understanding</strong> cancer research trials(clinical trials) describes clinical trials in more detail.We can send you a copy for free.Blood and tumour samplesBone marrow or blood and tumour samples may be takento help make the right diagnosis. You may be asked for yourpermission to use some of your samples for research intocancer. If you’re taking part in a trial you may also be askedto give other samples, which may be frozen and stored forfuture use, when new research techniques become available.These samples will have your name removed from them soyou can’t be identified.The research may be carried out at the hospital where youare treated, or at another one. This type of research takes along time, so you are unlikely to hear the results. The sampleswill, however, be used to increase knowledge about the causesof cancer and its treatment. This research will hopefully improvethe outlook for future patients.Our website macmillan.org.uk/clinicaltrials hasinformation about current clinical trial databases.78


Complementary therapiesComplementary therapiesComplementary therapies can help to improve people’squality of life and well-being, and can sometimes help toreduce the side effects of <strong>chemotherapy</strong>. Many people findthat complementary therapies can help them feel strongerand more confident in dealing with <strong>chemotherapy</strong>. Many ofthese therapies can be used safely alongside conventionaltreatments and medicines, but it’s important to check theparticular treatment with your doctor first.We have a booklet about complementarytherapies, with information on how to contactregistered practitioners.You may want to try complementary therapies, such asmeditation or visualisation, to help you feel less anxious.Other therapies, such as gentle massage, may also help.Some hospitals offer complementary therapies alongsideconventional care. These may include aromatherapy,massage, relaxation, visualisation, guided imagerytechniques, reflexology and acupuncture.‘At the local hospital I’m able to have fivesessions of reflexology, Reiki, aromatherapy,healing. I’ve had one session of reflexology,absolutely extraordinary.’Tom79


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Your feelingsYour feelingsYou may find that coping with cancer and <strong>chemotherapy</strong>can sometimes make you feel anxious, afraid or depressed.Sometimes these feelings can be triggered by things likehaving to change your daily routine to fit in with <strong>chemotherapy</strong>.Or it may be something more obvious such as a particular sideeffect or the risk of infertility. It’s natural to have these feelingsduring your treatment.Everyone needs some support during difficult times andhaving cancer is one of the most stressful situations you’relikely to face. It’s often helpful to talk over your feelings withyour family or close friends.You can also talk to your doctor, specialist nurse or a socialworker about how you’re feeling. It’s important to let themknow if you’re struggling or if you think you may be depressed.They can arrange more support or refer you to a counselloror doctor who specialises in emotional problems of peoplewith cancer. They may also prescribe an anti-depressant oranti-anxiety drug for you.Our booklet How are you feeling? may help youcope with your feelings and emotions.81


<strong>Understanding</strong> <strong>chemotherapy</strong>How you can help yourselfThere are things you can do which may make your courseof <strong>chemotherapy</strong> treatment easier to cope with.People often talk about having a positive attitude. This doesn’tmean being cheerful and happy all the time. When you’recoping with a serious illness, it’s normal to feel worried andlow sometimes. Accepting that you’ll have days when youdon’t feel positive is part of coping with the cancer.Finding informationKnowing more about the cancer and the side effects of yourtreatment may help you feel more in control. You may havequestions about the effects of <strong>chemotherapy</strong> on the cancerand your life in general. Getting information and answersto these questions can help to reduce anxiety.If you don’t understand the explanations given to you byyour doctors or nurses, then keep asking questions untilyou do. Most doctors and nurses are very willing to answerany questions and to keep you up-to-date on your progress.Keeping a journal or blogYou may find it helpful to keep a diary, journal or blog(online journal) of your treatment. This can have a practicaluse, as well as letting you express your feelings. If yourecord any side effects you have, this will help you to tellyour doctor or nurse how things have been for you inbetween your appointments.82


How you can help yourselfIt’ll also help you to see how things change when differentmedicines are used. Changes to reduce side effects can oftenbe made by using this kind of information.As your journal develops, you may find it encouraging to lookback at how you coped during previous difficult times. A privatediary also allows you to write down anything that may bedifficult for you to talk about. Sometimes it can be used to helpyou prepare to speak to someone about a problem, or it canbe used to describe anger or sadness that you feel you can’texpress in any other way.You can create your own blog, chat to peopleand watch videos on our online community.Visit macmillan.org.uk/communityExerciseTaking some gentle exercise, such as walking, or more ifyou feel up to it can give you more energy and reduce stress.It’s something positive you can do with family and friends.After <strong>chemotherapy</strong> is over it can help with your recoveryand reduce the risk of some late effects of <strong>chemotherapy</strong>(see pages 65–66).We have a booklet about physical activity and cancer,which you might find helpful.83


<strong>Understanding</strong> <strong>chemotherapy</strong>How others can helpThere may be times when you want to be alone with yourthoughts. At other times, sharing your feelings can be a relief.Support groupsSupport groups can put you in touch with other people havingsimilar treatment. Talking with other people can be a goodway of discussing feelings, and you can also pick up someuseful coping tips. Our cancer support specialists can giveyou details of your local support groups. You can talk to themon 0808 808 00 00.Our booklet Talking about your cancer will also helpyou to find ways of discussing your cancer.Family and friendsFamily and friends often want to help you. However, they mayfind it difficult to understand exactly what you’re going through.Good communication is really important. Just at a time whenyou feel your friends and family should be helping, they maystand back and wait for you to make the first move. This isoften because they’re worried they may say the wrong thing,or they think you may want to cope alone. They may also befeeling quite emotional themselves.84


How others can helpTry to be open and honest about how your treatment is goingand how you feel about it. Misunderstandings can then beavoided and family and friends are given the chance to showtheir love and support.Our booklet called Lost for words was written forrelatives and friends of people with cancer. It looksat the difficulties people may have when talkingabout cancer.InformationOur cancer support specialists on 0808 808 00 00 can giveyou and your family information about all aspects of cancerand <strong>chemotherapy</strong>, including the practical and emotionalproblems of living with them.85


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WorkWorkYou may need to take time off work during your treatmentand for a while afterwards. It can be hard to judge the besttime to go back to work, and this will depend mainly on thetype of work you do and how much your income is affected.It’s important to do what’s right for you.Getting back into your normal routine can be very helpful,and you may want to go back to work as soon as possible.It can be helpful to talk to your employer about the situation –it may be possible for you to work part-time or job share.On the other hand, it can take a long time to recover fully fromcancer treatment, and it may be many months before you feelready to return to work. It’s important not to take on too much,too soon. Your consultant, GP or specialist nurse can help youdecide when and if you should go back to work.Employment rightsThe Equality Act 2010 protects anyone who has, or has had,cancer. Even if a person who had cancer in the past hasbeen successfully treated and is now cured, they are stillcovered by the act. This means their employer must notdiscriminate against them for any reason, including theirpast cancer. The Disability Discrimination Act protects peoplein Northern Ireland.Our booklets Work and cancer, Working while caring forsomeone with cancer and Self-employment and cancerhave more information that may be helpful. There’salso lots more information at macmillan.org.uk/work87


<strong>Understanding</strong> <strong>chemotherapy</strong>Financial help and benefitsIf you’re struggling to cope with the financial effects of cancer,help is available.The benefits system can be complicated, so it’s a goodidea to talk to an experienced benefits adviser. You canspeak to one by calling the <strong>Macmillan</strong> Support Lineon 0808 808 00 00. We’ve just outlined some benefitshere, but there may be others available to you.If you’re an employee and unable to work because of illness,you may be able to get Statutory Sick Pay. This is paid by youremployer for up to 28 weeks of sickness, and if you qualify for it,your employer can’t pay you less.Before your Statutory Sick Pay ends, or if you are not eligible,check whether you can claim Employment and SupportAllowance. This benefit gives financial help to people whoare unable to work due to illness or disability.If you’re receiving intravenous (by injection into a vein)<strong>chemotherapy</strong> or are likely to receive it within six months,you will automatically be assessed as having limited capabilityfor work.88


Financial help and benefitsDisability Living Allowance (DLA) is for people under 65 whohave difficulty walking or looking after themselves (or both).You need to have had these difficulties for at least three monthsto qualify, and they should be expected to last for the next sixmonths. As part of the Welfare Reform Act 2012, DLA will bereplaced by a Personal Independence Payment for peopleof working age from April 2013.Attendance Allowance (AA) is for people aged 65 or overwho have difficulty looking after themselves. You may qualify ifyou need help with personal care, such as getting out of bed,having a bath or dressing yourself. You don’t need to have acarer to be eligible, but you must have needed care for at leastsix months.If you’re terminally ill, you can apply for DLA or AA under the‘special rules’. This means your claim will be dealt with quicklyand you’ll receive the benefit you applied for at the highest rate.Help for carersIf you are a carer, you may be entitled to financial help as well.This may include Carer’s Allowance, which is the main statebenefit for carers, and Carer’s Credit, which helps carers buildup qualifying years for State Pension.You can find out more about benefits from Citizens Advice,or by calling the Benefit Enquiry Line on 0800 882 200(or 0800 220 674 if you live in Northern Ireland). The websitegov.uk (nidirect.gov.uk if you live in Northern Ireland) alsohas useful information.89


<strong>Understanding</strong> <strong>chemotherapy</strong>See our booklet Help with the cost of cancer formore detailed information. Our video at macmillan.org.uk/gettingfinancialhelp may also be useful.InsurancePeople who have or have had cancer may find it harder to getcertain types of insurance, including life and travel insurance.An independent financial adviser (IFA) can help you assess yourfinancial needs and find the best deal for you. You can findan IFA by contacting one of the organisations on page 99.Our leaflet Getting travel insurance and our bookletInsurance may be helpful.90


After treatmentAfter treatmentAfter your <strong>chemotherapy</strong> has finished, you will have regularcheck-ups and possibly scans or x-rays. These will probablycontinue for several years. If you have any problems, or noticeany new symptoms in between your appointments, let yourdoctor know as soon as possible.Many people find that they get very anxious before theirappointments. This is natural and it may help to get supportfrom family, friends, or one of the organisations on pages96–99 during this time.When your treatment is finished, you may feel it’s time toget back to normal. However, this can sometimes be oneof the hardest times to cope with. Recovery times vary,and no one can say for sure how long it should take to getover the treatment and its effects. The end of the visits tohospital for treatment can leave you feeling like you’re onyour own.Many people find that they feel very low and emotional atthis time, when they had expected to be able to put the cancerand the treatment behind them. This may be the time when youneed the most support. Support is available if you would like it.91


<strong>Understanding</strong> <strong>chemotherapy</strong>How we can help you<strong>Cancer</strong> is the toughest fight most of us willever face. But you don’t have to go throughit alone. The <strong>Macmillan</strong> team is with youevery step of the way.Get in touch<strong>Macmillan</strong> <strong>Cancer</strong> Support89 Albert Embankment,London SE1 7UQQuestions about cancer?Call free on 0808 808 00 00(Mon–Fri, 9am–8pm)www.macmillan.org.ukHard of hearing?Use textphone0808 808 0121 or Text Relay.Non-English speaker?Interpreters are available.Clear, reliable informationabout cancerWe can help you by phone,email, via our website andpublications or in person.And our information is free toeveryone affected by cancer.<strong>Macmillan</strong> Support LineOur free, confidential phoneline is open Monday–Friday,9am–8pm. Our cancersupport specialists provideclinical, financial, emotionaland practical information andsupport to anyone affected bycancer. Call us on 0808 80800 00 or email us via ourwebsite, macmillan.org.uk/talktousInformation centresOur information and supportcentres are based in hospitals,libraries and mobile centres,and offer you the opportunityto speak with someoneface-to-face. Find your nearestone at macmillan.org.uk/informationcentres92


How we can help youPublicationsWe provide expert, up-to-dateinformation about differenttypes of cancer, tests andtreatments, and informationabout living with and aftercancer. We can send you freeinformation in a variety offormats, including booklets,leaflets, fact sheets, andaudio CDs. We can alsoprovide our information inBraille and large print.You can find all of ourinformation, along with severalvideos, online at macmillan.org.uk/cancerinformationReview our informationHelp us make our resourceseven better for people affectedby cancer. Being one of ourreviewers gives you the chanceto comment on a variety ofinformation including booklets,fact sheets, leaflets, videos,illustrations and website text.Need out-of-hours support?You can find a lot ofinformation on our website,macmillan.org.ukFor medical attention out ofhours, please contact your GPfor their out-of-hours service.Someone to talk toWhen you or someone youknow has cancer, it can bedifficult to talk about howyou’re feeling. You can callour cancer support specialiststo talk about how you feel andwhat’s worrying you.We can also help you findsupport in your local area,so you can speak face-to-facewith people who understandwhat you’re going through.If you’d like to hear moreabout becoming a reviewer,email reviewing@macmillan.org.uk93


<strong>Understanding</strong> <strong>chemotherapy</strong>Professional helpOur <strong>Macmillan</strong> nurses, doctorsand other health and socialcare professionals offer experttreatment and care. They helpindividuals and families dealwith cancer from diagnosisonwards, until they no longerneed this help.You can ask your GP, hospitalconsultant, district nurseor hospital ward sister ifthere are any <strong>Macmillan</strong>professionals availablein your area, or call us.Support for each otherNo one knows more aboutthe impact cancer has ona person’s life than thosewho have been affected byit themselves. That’s why wehelp to bring people withcancer and carers together intheir communities and online.Support groupsYou can find out about supportgroups in your area by callingus or by visiting macmillan.org.uk/selfhelpandsupportOnline communityYou can also share yourexperiences, ask questions,get and give support toothers in our onlinecommunity at macmillan.org.uk/community94


How we can help youFinancial andwork-related supportHaving cancer can bring extracosts such as hospital parking,travel fares and higher heatingbills. Some people may haveto stop working.If you’ve been affected in thisway, we can help. Call the<strong>Macmillan</strong> Support Line andone of our cancer supportspecialists will tell you aboutthe benefits and other financialhelp you may be entitled to.We can also give youinformation about your rightsat work as an employee, andhelp you find further support.<strong>Macmillan</strong> GrantsMoney worries are the lastthing you need when you havecancer. A <strong>Macmillan</strong> Grant isa one-off payment for peoplewith cancer, to cover a varietyof practical needs includingheating bills, extra clothing,or a much needed break.Find out more about thefinancial and work-relatedsupport we can offerat macmillan.org.uk/financialsupportLearning about cancerYou may find it useful to learnmore about cancer and howto manage the impact it canhave on your life.You can do this online on ourLearn Zone – macmillan.org.uk/learnzone – which offersa variety of e-learning coursesand workshops. There’salso a section dedicated tosupporting people with cancer– ideal for people who wantto learn more about whattheir relative or friend isgoing through.95


<strong>Understanding</strong> <strong>chemotherapy</strong>Other useful organisationsBritish Associationfor Counselling andPsychotherapy (BACP)BACP House,15 St John’s Business Park,Lutterworth LE17 4HBTel 01455 883 300Email bacp@bacp.co.ukwww.bacp.co.ukPromotes awareness ofcounselling and signpostspeople to appropriate services.You can search for a qualifiedcounsellor at itsgoodtotalk.org.ukCarers UK20 Great Dover Street,London SE1 4LXTel (England, Scotland,Wales) 0808 808 7777Tel (Northern Ireland)028 9043 9843(Wed–Thurs, 10am–12pmand 2–4pm)Emailadviceline@carersuk.orgwww.carersuk.orgOffers information andsupport to carers acrossthe UK. Can put people incontact with support groupsfor carers in their area.96Citizens AdviceProvides advice on avariety of issues includingfinancial, legal, housingand employment issues.Find details for your localoffice in the phone bookor on one of the followingwebsites:England and Waleswww.citizensadvice.org.ukScotlandwww.cas.org.ukNorthern Irelandwww.citizensadvice.co.ukYou can also find adviceonline in a range of languagesat adviceguide.org.uk


Other useful organisationsDaisy Network: PrematureMenopause Support GroupPO Box 183,Rossendale BB4 6WZEmaildaisy@daisynetwork.org.ukwww.daisynetwork.org.ukA support group for womenwho have early ovarian failure.The website gives informationabout premature menopauseand related issues. Also has amailing list for subscribers anddetails of other helpful groups.Look Good...Feel BetterWest Hill House,32 West Hill, Epsom,Surrey KT19 8JDTel 01372 747 500Email info@lgfb.co.ukwww.lookgoodfeelbetter.co.ukHolds free skincare and makeupworkshops to help with thevisible side effects of cancertreatment and aims to boostconfidence and well-being.General cancer andsupport organisations<strong>Cancer</strong> FocusNorthern Ireland40–44 Eglantine Avenue,Belfast BT9 6DXTel 0800 783 3339(Mon–Fri, 9am–1pm)Emailhelpline@cancerfocusni.orgwww.cancerfocusni.orgOffers a variety of servicesto people affected by cancer,including a free helpline,counselling and links tolocal support groups.<strong>Cancer</strong> Support ScotlandShelley Court, GartnavelComplex, Glasgow G12 0YNTel 0141 211 0122Email info@cancersupportscotland.orgwww.cancersupportscotland.orgOffers informationand support to peopleaffected by cancer. Alsoruns support groups, andprovides counselling andcomplementary therapies.97


<strong>Understanding</strong> <strong>chemotherapy</strong>Irish <strong>Cancer</strong> Society43–45 Northumberland Road,Dublin 4, IrelandTel 1800 200 700(Mon–Thurs, 9am–7pm,Fri, 9am–5pm)Email helpline@irishcancer.iewww.cancer.ieHas a freephone cancerhelpline staffed by nursestrained in cancer care.You can also chat to a nurseonline and use the site’smessage board.Maggie’s Centres1 st Floor, One Waterloo Street,Glasgow G2 6AYTel 0300 123 1801Email enquiries@maggiescentres.orgwww.maggiescentres.orgMaggie’s Centres provideinformation about cancer,benefits advice, and emotionalor psychological support.Marie Curie <strong>Cancer</strong> Care89 Albert Embankment,London SE1 7TPTel 0800 716 146(Mon–Fri, 9am–5.30pm)Email supporter.services@mariecurie.org.ukwww.mariecurie.org.ukMarie Curie nurses providefree end-of-life care to peoplein their own homes, or inMarie Curie hospices, 24 hoursa day, 365 days a year.Teenage <strong>Cancer</strong> Trust3 rd Floor, 93 Newman Street,London W1T 3EZTel 020 7612 0370www.teenagecancertrust.orgA charity devoted to improvingthe lives of teenagers andyoung adults with cancer.Run a support network foryoung people with cancer,their friends and families.98


Other useful organisationsTenovusHead Office,Gleider House, Ty Glas Road,Cardiff CF14 5BDTel 0808 808 1010www.tenovus.org.ukProvides a range of servicesto people with cancerand their families,including counsellingand a freephone helpline.Financial or legaladvice and informationPersonal Finance Society –‘Find an Adviser’ service42–48 High Road,South Woodford,London E18 2JPTel 020 8530 0852www.findanadviser.orgUse the website to findqualified financial advisersin your area.The Money Advice ServiceHolborn Centre, 120 Holborn,London EC1N 2TDTel 0300 500 5000Email enquiries@moneyadviceservice.org.ukwww.moneyadviceservice.org.ukRuns a free financialhealth check service andgives advice aboutall types of financial matters.Money Advice ScotlandTel 0141 572 0237www.moneyadvicescotland.org.uk99


<strong>Understanding</strong> <strong>chemotherapy</strong>FurtherresourcesRelated <strong>Macmillan</strong>informationYou may want to order someof the resources mentioned inthis booklet. These include:• <strong>Cancer</strong> and complementarytherapies• <strong>Cancer</strong> treatment and fertility– information for men• <strong>Cancer</strong> treatment and fertility– information for women• Coping with fatigue• Coping with hair loss• Eating problems and cancer• Getting travel insurance• Giving up smoking• Healthy eating and cancer• Help with the cost of cancer• How are you feeling?• Insurance• Lost for words• Making treatment decisions• Physical activity and cancer• Relationships, sex andfertility for young peopleaffected by cancer• Self-employment and cancer• Sexuality and cancer• Talking about your cancer• The building-up diet• Travel and cancer• <strong>Understanding</strong> cancerof the ovary• <strong>Understanding</strong> cancerresearch trials (clinical trials)• <strong>Understanding</strong> early(superficial) bladder cancer• Weight managementafter cancer treatment• Work and cancer• Working while caringfor someone with cancerTo order these or any ofour fact sheets, visitbe.macmillan.org.uk orcall 0808 808 00 00. Ourinformation is also available100


Further resourcesat macmillan.org.uk/cancerinformationAudio resourcesOur high-quality audiomaterials (based on ourrange of booklets) includeinformation about cancertypes, different treatmentsand about living with cancer.To order your free CD,visit be.macmillan.org.ukor call 0808 808 00 00.Useful websitesA lot of information aboutcancer is available on theinternet. Some websitesare excellent; others havemisleading or out-of-dateinformation.The sites listed here areconsidered by nursesand doctors to containaccurate information andare regularly updated.<strong>Macmillan</strong> <strong>Cancer</strong> Supportwww.macmillan.org.ukFind out more about livingwith the practical, emotionaland financial effects ofcancer. Our website containsexpert, accurate, up-to-dateinformation about cancer andits treatments, including:• all the information fromour 100+ booklets and350+ fact sheets• videos featuringreal-life stories frompeople affected by cancerand information frommedical professionals• how <strong>Macmillan</strong> can help,the services we offer andwhere to get support• how to contact our cancersupport specialists,including an email formto send your questions• local support groupssearch, links to othercancer organisationsand a directory ofinformation materials• a huge online community ofpeople affected by cancersharing their experiences,advice and support.101


<strong>Understanding</strong> <strong>chemotherapy</strong>www.cancerbuddiesnetwork.org(<strong>Cancer</strong> Buddies Network)An online support group foranyone affected by cancer.www.cancerhelp.org.uk(<strong>Cancer</strong> Research UK)Contains patient informationon all types of cancer andhas a clinical trials database.www.cancer.gov(National <strong>Cancer</strong>Institute – National Instituteof Health – USA)Gives comprehensiveinformation on cancerand treatments.www.healthtalkonline.orgwww.youthhealthtalk.org(site for young people)Both websites containinformation about somecancers and have video andaudio clips of people talkingabout their experiences ofcancer and its treatments.www.macmillan.org.uk/cancervoices(<strong>Macmillan</strong> <strong>Cancer</strong> Voices)A UK-wide network thatenables people who have orhave had cancer, and thoseclose to them such as familyand carers, to speak out abouttheir experience of cancer.www.nhs.uk(NHS Choices)NHS Choices is the online‘front door’ to the NHS. It isthe country’s biggest healthwebsite and gives all theinformation you need to makedecisions about your health.www.nhsdirect.nhs.uk(NHS Direct Online)NHS health informationsite for England – coversall aspects of health,illness and treatments.www.nhs24.com(NHS 24 in Scotland)www.nhsdirect.wales.nhs.uk (NHS DirectWales)www.n-i.nhs.uk(Health and Social Carein Northern Ireland)102


Your <strong>chemotherapy</strong>Your <strong>chemotherapy</strong>Drug namesForm takenDoseHow often(injection, liquid,tablet)In the event of problems contact:(Office hours):(Other times):Tell your doctor or nurse if:Number of courses planned:Dates:Treatment will be reviewed on:103


<strong>Understanding</strong> <strong>chemotherapy</strong>Chemotherapy – questionsyou could askHere are some questions that you may want toask your cancer doctor or specialist nurse.What are the contact telephone numbers and who doI speak to if I have problems during the night?How long will my whole course of <strong>chemotherapy</strong> take?Will I need any tests before or after <strong>chemotherapy</strong>?What are the likely side effects?Is there anything I should avoid, and what can I do tohelp myself?104


Chemotherapy – questions you could askWill the <strong>chemotherapy</strong> drugs affect my fertility?Are there any long-term effects I should know about?How is <strong>chemotherapy</strong> likely to affect my work, money,looking after children or caring for someone else?Will <strong>chemotherapy</strong> affect my sex life?Any other questions you may have:105


<strong>Understanding</strong> <strong>chemotherapy</strong>DisclaimerWe make every effort to ensure that the information we provide is accurate and up to datebut it should not be relied upon as a substitute for specialist professional advice tailored toyour situation. So far as is permitted by law, <strong>Macmillan</strong> does not accept liability in relationto the use of any information contained in this publication, or third-party information orwebsites included or referred to in it. Some photographs are of models.ThanksThis booklet has been written, revised and edited by <strong>Macmillan</strong> <strong>Cancer</strong> Support’s <strong>Cancer</strong>Information Development team. It has been approved by our medical editor, Dr TerryPriestman, Consultant Clinical Oncologist.With thanks to: Dr Tim Eisen, Professor of Medical Oncology; Danny Lynch, ClinicalOncology Nurse; Natalie Singer, <strong>Macmillan</strong> Advanced Haematology Clinical NurseSpecialist; and the people affected by cancer who have reviewed this edition.SourcesWe’ve listed a sample of the sources used in this publication below. If you’d likefurther information about the sources we use, please contact us atbookletfeedback@macmillan.org.ukNational <strong>Cancer</strong> Action Team. Chemotherapy services in England: ensuring quality andSafety. London. 2009.National Institute of Clinical Excellence (NICE). Neutropenic sepsis full guidelines. 2012.NHS Education for Scotland. Workforce education and training framework for the safe useof cytotoxic medicines. 2007.NHS National Chemotherapy Advisory Group. Chemotherapy services in England: ensuringquality and safety. 2009.Perry, M. The Chemotherapy Source Book. 4 th edition. Philadelphia. Lippincott Williamsand Wilkins. 2008.UKONS Oncology Nursing Society. Oncology/Haematology 24-Hour Triage RapidAssessment and Access Toolkit. October 2010.106


Can you do something to help?We hope this booklet has been useful to you. It’s just one of ourmany publications that are available free to anyone affected bycancer. They’re produced by our cancer information specialistswho, along with our nurses, benefits advisers, campaigners andvolunteers, are part of the <strong>Macmillan</strong> team. When people arefacing the toughest fight of their lives, we’re there to supportthem every step of the way.We want to make sure no one has to go through cancer alone,so we need more people to help us. When the time is right for you,here are some ways in which you can become a part of our team.5 waysyou canwithhElP somEonEcancerShare your cancer experienceSupport people living with cancer by telling your story,online, in the media or face to face.Campaign for changeWe need your help to make sure everyone gets the right support.Take an action, big or small, for better cancer care.Help someone in your communityA lift to an appointment. Help with the shopping.Or just a cup of tea and a chat. Could you lend a hand?Raise moneyWhatever you like doing you can raise money to help.Take part in one of our events or create your own.Give moneyBig or small, every penny helps.To make a one-off donation see over.Call us to find out more0300 1000 200macmillan.org.uk/getinvolved


Please fill in yourpersonal detailsMr/Mrs/Miss/OtherNameSurnameAddressPostcodePhoneEmailPlease accept my gift of £(Please delete as appropriate)I enclose a cheque / postal order /Charity Voucher made payable to<strong>Macmillan</strong> <strong>Cancer</strong> SupportOR debit my:Visa / MasterCard / CAF CharityCard / Switch / MaestroCard numberValid fromIssue noExpiry dateSecurity numberDon’t let the taxmankeep your moneyDo you pay tax? If so, your gift willbe worth 25% more to us – at noextra cost to you. All you have todo is tick the box below, and thetax office will give 25p for everypound you give.I am a UK taxpayer and Iwould like <strong>Macmillan</strong> <strong>Cancer</strong>Support to treat all donationsI have made for the four yearsprior to this year, and alldonations I make in the future,as Gift Aid donations, until Inotify you otherwise.I confirm I have paid or will pay an amount ofIncome Tax and/or Capital Gains Tax in eachtax year, that is at least equal to the tax thatCharities & CASCs I donate to will reclaim onmy gifts. I understand that other taxes such asVAT and Council Tax do not qualify and that<strong>Macmillan</strong> <strong>Cancer</strong> Support will reclaim 25p oftax on every £1 that I give.<strong>Macmillan</strong> <strong>Cancer</strong> Support and our tradingcompanies would like to hold your details inorder to contact you about our fundraising,campaigning and services for people affectedby cancer. If you would prefer us not to use yourdetails in this way please tick this box.In order to carry out our work we may need topass your details to agents or partners who acton our behalf.SignatureDate / /If you’d rather donate online go to macmillan.org.uk/donatePlease cut out this form and return it in an envelope (no stamp required) to:Supporter Donations, <strong>Macmillan</strong> <strong>Cancer</strong> Support, FREEPOST LON15851,89 Albert Embankment, London SE1 7UQ#27530


<strong>Cancer</strong> is the toughest fight most of uswill ever face. If you or a loved one hasbeen diagnosed, you need a team ofpeople in your corner, supporting youevery step of the way. That’s who we are.We are the nurses and therapists helping you throughtreatment. The experts on the end of the phone.The advisers telling you which benefits you’re entitled to.The volunteers giving you a hand with the everydaythings. The campaigners improving cancer care.The community supporting you online, any time.The fundraisers who make it all possible.You don’t have to face cancer alone.We can give you the strength to get through it.We are <strong>Macmillan</strong> <strong>Cancer</strong> Support.Questions about living with cancer?Call free on 0808 808 00 00 (Mon–Fri, 9am–8pm)Alternatively, visit macmillan.org.ukHard of hearing? Use textphone0808 808 0121, or Text Relay.Non-English speaker? Interpreters available.© <strong>Macmillan</strong> <strong>Cancer</strong> Support, 2012. 13 th edition. MAC11619.Next planned review 2014. <strong>Macmillan</strong> <strong>Cancer</strong> Support, registeredcharity in England and Wales (261017), Scotland (SC039907) andthe Isle of Man (604).Printed using sustainable material. Please recycle.

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