Coming for Chemotherapy

This is a general guide. You will be provided with specific information about your particular treatment.

Please ask any of the medical or nursing staff if you have any concerns or want more detailed information at any time.

It is advisable to keep this booklet together with the pack of other information and consent forms you will be given. It is helpful to bring the pack with you when you come to the hospital or if you see your GP, other doctors, nurses or pharmacists.

At the back of this booklet is a list of medical terms and their definitions that you may hear or read about.

There is also some space for you, or one of your health professionals, to write notes about your treatment and side- effects which can be useful to help you remember what has been discussed or remind you of questions that you want to ask.

When to contact the hospital?

You will be given a contact card with details for contacting the hospital if you are unwell.

Please call the hospital if any of these things happen:

• High temperature or fever. Please check your temperature with a thermometer if you feel unwell. A normal temperature is 36 – 37°C. If your temperature is 38°C or higher please contact the hospital immediately even if you don’t feel unwell.
• Feel unwell or have symptoms of infection, even if you don’t have a temperature such as feeling hot or cold or shivering.
• Nausea or vomiting that is not controlled by your medication.
• Diarrhoea that lasts longer than 24 hours or is very severe.
• A sore mouth that prevents you eating or drinking.
• A persistent cough.
• Blood in your urine or stools.
• Bleeding not controlled by general first-aid.
• Bruises or small blood spots which appear on your body.
• Pain not controlled by medication.
• You require dental treatment.

Clinical research trials

The Haematology and Oncology Department is involved in many large research trials.

Trials are needed so that we can develop better cancer treatments. Any new treatment must work better than the standard treatments before we can use it. This can only be done through a carefully monitored research trial.

As part of your treatment, we may ask if you would like to help in a research trial. This may involve using a completely new treatment or looking at a way of improving standard treatment.

You do not have to take part in a research trial. If you do, you will be able to change your mind at any time and we will offer you the standard treatment.

If you don’t want to take part in the trial, we will offer you standard treatment.

If you do want to take part, one of the research nurses will be able to discuss your treatment with you.

You can get independent advice on research trials. Please ask the research team for more information about this.

What is chemotherapy?

Chemotherapy is treatment with drugs which destroy or control cancer cells. It is usually given by an injection or infusion (a drip) into a vein. Sometimes it is given as oral medicine or as an injection under the skin.

A few cancers need chemotherapy to be administered into the fluid that surrounds the spine – this is called intrathecal chemotherapy. Separate information will be provided if this is part of your treatment.

There are many different chemotherapy drugs which may be used on their own or with other drugs. You may hear your treatment called a regimen by your medical team.

The decision about what regimen to give you will have been made by a group of doctors using national guidelines and evidence from research. You will be given specific information about your individual regimen.

Other treatments used to treat cancer include:

• Radiotherapy
• Surgery
• Immunotherapy
• Hormone treatment
• Targeted therapies.

Some people need more than one type of treatment e.g. surgery followed by chemotherapy. You may be given chemotherapy alone or alongside a combination of any of the other treatments mentioned above, depending on what your consultant has advised.

You will be given separate information about these treatments if relevant to you.

How does chemotherapy work?

Chemotherapy drugs aim to stop cancer cells from growing and spreading. The cancer cells become damaged and eventually die. Different drugs damage the cancer cells in different ways so often combinations of drugs are used.

We will usually give you chemotherapy as several courses (cycles) of treatment over a period of weeks or months to aim to kill as many cancer cells as possible.

Depending on the drugs that you are given, each course can last from a few minutes to several days. This will be followed by a rest period which allows your body to recover from any side-effects of the treatment.

Unfortunately, chemotherapy can affect normal cells in your body as well, and this sometimes causes unpleasant side-effects. However, normal cells will usually regrow and heal quickly so the damage is only temporary. Most side-effects disappear completely when the treatment is over. There is a section explaining side-effects in more detail on page 13. You will be given specific information about the side-effects of your particular chemotherapy treatment.

Personalised treatment

You may find that your drugs are not the same as another patient or person you know with cancer.

This is because the medical team will have got information about your cancer cells and will have prescribed treatment especially for you. The doses may be dependent on your height/weight or your kidney or liver function.

On the day of treatment

You should eat and drink as normal and take your medications unless advised otherwise. If you are having day chemotherapy please bring regular medications especially pain killers with you. It is good to bring something to keep you entertained and any particular food/drinks/snacks that you want.

Once chemotherapy is in progress you cannot leave the clinical ward area. You will be asked to confirm your details every time the nurses give you any drugs to make sure it matches the prescription and the treatment.

Before treatment

You will need blood tests and a toxicity review to make sure that you are well enough to get the treatment. Sometimes you may need the treatment delaying to allow side-effects to subside or sometimes the doses need changing to suit you.

How you will be given your chemotherapy

To treat your cancer we will give you one or more chemotherapy drugs. We may also need to give you other fluids and medications to prevent some side effects such as nausea or to reduce the chance of you reacting to a drug. A small number of patients react to the chemotherapy drugs and require extra medication to treat the reaction. The doctor or nurse will discuss this with you.

Intravenous medicine is usually given through a temporary small plastic tube (cannula) in your hand or forearm. Usually the cannula is put in each cycle on the day of treatment by a nurse and is removed when you are discharged or it is not needed.

Certain treatment regimens need to be given over a few days so you might need longer term vein access which is inserted by specially trained staff. They can stay in place for the entire duration of your treatment – weeks, months or longer.

These include:

• A peripherally inserted central catheter (PICC) – a tube that is placed into a vein in your upper arm.
• a tunnelled central line (Hickman) a tube that is placed into a vein in your chest.
• an implanted port device that sits under the skin usually on your upper chest and connects to the veins leading to your heart. When needed it is accessed by inserting a needle into the device through the skin.

Your doctor or nurse will discuss what type of access you need.

The cannula or long term tube will be attached to a bag of fluid (a drip) and the chemotherapy can either be given as a drip/infusion over a few minutes or hours, or the nurse might sit with you and administer syringes of chemotherapy drugs into the tubing whilst it is diluted by the drip.

Giving your chemotherapy through a cannula

The nurses take great care to give you your chemotherapy safely. Sometimes however, chemotherapy can leak outside your vein into the surrounding skin and tissues.

This can be quite serious, and cause damage around where the cannula was inserted. Extravasation is the term used to describe leakage of chemotherapy out of the vein into the surrounding tissue.

Some chemotherapy drugs may cause a small amount of damage, whilst other chemotherapy drugs can cause more serious damage. The nurses will take precautions to prevent this from happening and provide treatment if any signs of extravasation do occur.

Administering your chemotherapy safely – how you can help

If you will be having a cannula please wear clothes with short sleeves or sleeves that can be pushed up easily so the forearm is visible. This means the site where the chemotherapy is being delivered can be seen easily by the nurses.

Before the chemotherapy treatment starts, place things you may need, such as tissues, books and drinks, on the side that does not have the chemotherapy infusing, so they are easy to reach.

You should tell a nurse straight away if the area around the cannula is painful, swollen, itchy, red or in any way unusual. Do not wait to see if the symptoms get worse.

To reduce the chance of problems the nurse will put a dressing on the cannula and tape on the tubing. If your tubing is accidently pulled or tugged please let a nurse know immediately so it can be checked that it has not become dislodged.

Sometimes it may take more than one attempt for your chemotherapy nurse to insert a cannula into your vein to ensure your chemotherapy is delivered safely. The reasons for this maybe because your veins are fragile and small, or the chemotherapy drugs have caused irritation to your veins. If there is any doubt about the safety of your cannula and delivery of chemotherapy, the nurse will stop the chemotherapy and re-start it in another vein. This is for your own safety.

There may become a time when it is not safe to continue delivering your chemotherapy into a vein in your hand or arm. This can be because there are no more visible veins or your veins have become fragile, and there is an increased risk of chemotherapy leaking outside your vein into the surrounding skin and tissue. To ensure the safe delivery of chemotherapy, your chemotherapy nurse or doctor may discuss the option of a long term catheter/tube which can be inserted into your upper arm or chest.

If you have a long term venous access tube fitted please wear clothes that allow easy access for connection to your chemotherapy.

Care after chemotherapy delivery

Please immediately contact the hospital if, between your chemotherapy treatments, you notice any of the following symptoms around the site of where your chemotherapy was delivered:

• Swelling
• Redness or a white blanching colour
• Pain
• Itching
• A scab
• Anything unusual.

Body Fluids

When you have chemotherapy there may be small traces of the drugs you have been given in your bodily fluids. These traces may be found in urine, faeces and vomit for one week after your treatment. It is better for people who are not having treatment to avoid contact with traces of chemotherapy, therefore toilets should be flushed twice with the lid down and men are advised to sit down to urinate.

People who are not having chemotherapy should wear gloves if they are likely to come in contact with your bodily fluids for example, if they are cleaning up a spill. You can get further advice about cleaning up spills of bodily fluids and waste from your hospital team if you need to.

Fertility and chemotherapy

Women

Women often find that their periods become irregular or stop during chemotherapy treatment. Despite this, it is possible to remain fertile.

It is very important to take steps to prevent pregnancy whilst you are having treatment. It is safest to wear a condom during intercourse to prevent a pregnancy and reduce the risks of infection.

This will be discussed with you when your doctor consents you for your chemotherapy.

If you are considering becoming pregnant after your treatment, it is important to discuss this with your medical team. You may be advised to wait up to two years, because chemotherapy can cause abnormalities in a developing baby. This also allows time to make sure no further treatment is needed.

In some women of childbearing age, having chemotherapy treatment can reduce the chances of becoming pregnant and may lead to early menopause. This effect of treatment may be temporary or permanent and will depend on the treatment you have and your age.

The younger you are, the more likely it is that your periods will go back to normal after treatment.

If fertility is an issue we may discuss options to increase the chance of you being able to get pregnant after treatment has finished.

These include hormone treatment to pause or suppress ovarian function during chemotherapy or freezing eggs, embryos or ovarian tissue before you start treatment. It is important to be aware that these methods are not guaranteed to be successful and are not always available.

If you are having chemotherapy it is recommended that you do not breast feed during treatment. This is because chemotherapy may be passed to your baby through your breast milk. Your nurse or doctor at the hospital will discuss this further with you.

Men

Chemotherapy drugs can reduce male fertility. If this is likely, we may discuss storing your sperm before you start your treatment. Most drugs do not cause permanent infertility however chemotherapy can cause mutations in sperm. Natural conception is not recommended until six months after chemotherapy has finished to allow enough time for sperm to develop which are free from the effects of your treatment.

Will I have to come into hospital for my chemotherapy treatment?

Most chemotherapy is given as day case treatment and you can go home after the drugs have been given. Some regimens you may need to stay in hospital. The length of stay will vary depending on the type of treatment you are having. Your doctor or nurse will be able to give you an idea of your length of stay.

How many treatments will I need?

This depends on the type of cancer you have and how your body reacts to treatment. We can sometimes work out how many treatments you will need at the beginning, but often it depends how well you respond to the chemotherapy.

We will ask you to sign a consent form before we start chemotherapy treatment. This is to say that you have been given information about the drugs and the possible side-effects. After you have signed the form you still always have the opportunity to ask any questions you need to before and throughout your treatment.

Side-effects

Different drugs have different side-effects. You may be given information that lists a lot of side effects however these are potential issues to be aware of as each individual responds to medicines in a different way. The doctor or nurse will explain the side-effects that you may experience with your type of treatment. Some parts of the body, where normal cells grow quickly, are more affected by chemotherapy than others. These are the mouth, skin, hair, bone marrow and digestive system.

Please tell your medical team if you experience any of side-effects so they can treat you appropriately. You may be sent home with medications to take between treatments. It is important that you take these as directed and to contact the hospital if you feel they are not working or if you notice or feel anything which worries you.

The side-effects of chemotherapy on bone marrow

The bone marrow is the part of the body where blood cells are made. Red blood cells carry oxygen, white blood cells fight infections and platelets help your blood clot to prevent bleeding. Chemotherapy may slow down the production of these healthy cells, but this is temporary.

A blood test, called a Full Blood Count (FBC), is done before each treatment to make sure that you have enough healthy blood cells.

Sometimes, the bone marrow needs more time to recover so your next treatment may need to be postponed or the dose changed.

What will happen if my blood count falls?

White cells: In most cases, your white cells will probably be at their lowest about 7 to 14 days after chemotherapy. While your white cell count is low, you are more likely to get an infection and could become ill very quickly.

It is important to contact your hospital team if you think you have an infection so that they can give you antibiotics as soon as possible.

Please see the information on page 3: ‘When to contact your hospital team’.

Red cells: If you don’t have enough red cells, you may get anaemic, which would make you tired and short of breath. Sometimes, you will need a blood transfusion to help this.

Platelets: If the number of platelets in your blood falls, you may start to bruise or bleed more easily. Sometimes you may need a transfusion of platelets to help this.

Coping with side-effects

The next few pages describe the most common side-effects you may experience whilst on chemotherapy.

Nausea and vomiting – feeling or being sick

People react differently to chemotherapy. Some chemotherapy drugs cause people to feel sick or be sick. If you are being treated with this sort of drug, we will give you antiemetics (drugs which prevent nausea and vomiting) as part of the treatment. We may give you some to take home for if you feel sick later.

It is important to try and eat normally during your treatment although your appetite may be affected. If you feel sick or are sick after treatment, please tell us because we can change your anti-sickness drugs – there are lots of different types so we can change to one that works better for you.

It is important to drink at least two to three litres (five pints) of fluid a day. Please tell us if you are having difficulties keeping fluids down.

Things you can try to help reduce nausea:

• get enough rest;
• change what or when you eat;
• try wearing travel-sickness bands;
• hypnotherapy;
• relaxation.

During your treatment, try to eat a well-balanced diet. Small regular meals may make you feel better than if you eat a lot at once.

The smell of cooking may make you feel sick during chemotherapy. Some people prefer to cook a few meals at once and freeze them for use late.

If you have a problem eating, ask us for advice. We could give you some supplements, or refer you to a dietitian.

Taste changes and altered appetite

Chemotherapy can make some food taste different. Many people go off tea and coffee and some people get a metallic taste or food cravings. All this might affect your normal diet and make you lose or put on weight.

If you get an unpleasant taste in your mouth it may help if you:

• chew celery, fresh pineapple or low-sugar gum;
• suck ice lollies (not if on a drug called Oxaliplatin)
• drink herbal tea or ginger drinks.

Your food tastes should go back to normal when the treatment has finished.

Sore mouth

It is important that you keep your mouth clean and moist. This helps prevent:

• infection;
• problems with your teeth;
• mouth ulcers;
• fungal infections such as thrush.

Regularly clean your teeth with a fluoride toothpaste. A soft, child’s toothbrush is useful for regular brushing. Rinse your mouth well with water to remove debris. Please avoid using commercial mouthwashes, we can give you an antibacterial mouthwash if needed.

If you have false teeth, you should clean them after every meal. A lip salve will help to keep your lips moist.

Hair loss

Not all chemotherapy drugs cause hair loss. If this does happen, your hair will begin to grow back four to six weeks after your treatment has finished. At first, your new hair may be more curly, thicker or finer, or be a slightly different colour.

Chemotherapy can make your hair brittle and dry, so it’s a good idea to use a neutral Ph shampoo. Ask your chemotherapy nurse for advice. Do not have your hair set, permed or coloured with products that contain ammonia/bleach. Use hair dryers on a cool heat and do not use heated tongs or hot brushes. You should gently brush or comb your hair with a wide-toothed comb every day. You may be more comfortable wearing a hair-net or turban at night.

Wigs are available on the NHS, although there may be a charge. It is a good idea to choose a wig while you still have your own hair, so your own style and colour can be matched more easily. Your chemotherapy nurse will be able to arrange this for you. You can also wear hats, caps, turbans and scarves to cover thinning hair. Hair loss support is available through Leeds Cancer Support Service (LCC).

You may be offered ‘scalp cooling’ during treatment, which can make hair loss less likely. This only makes a difference with some types of chemotherapy and is only appropriate for people with certain cancers. We will answer any questions you have about scalp cooling.

Fatigue (extreme tiredness)

Most people who are treated with chemotherapy suffer fatigue at some time or another; this is normal.

This fatigue can be caused by your illness, the chemotherapy or by side-effects. The fatigue can be severe and varies from person to person. Some people can carry on as normal, others find that they have to take life more slowly during treatment. You may have to work part time, or give up work temporarily, cut down on social activities and get help with the housework.

Gentle exercise and spending time outdoors can be helpful. You also need to make sure you get enough rest. There are many things you can do to reduce your fatigue, and you can discuss these with the nurse who is caring for you.

There is a Macmillan information leaflet available about ‘Coping with Fatigue’. Please ask your nurse or doctor for further information. You may also find help and advice about coping with fatigue from the Leeds Cancer Support Service (see page 24 for details).

Reaction to sunlight

Chemotherapy drugs can make you more likely to get sunburnt, both during treatment and for some months after even on a cloudy day. You should protect your skin by covering up with loose-fitting clothing, wearing a hat and stay in the shade where possible. Use high factor SPF 50 sun cream on exposed skin. Do not use a sun bed.

Mood changes

You may notice a change in your moods, such as becoming more anxious or easily upset by things. Many people find themselves worrying about whether or not the treatment is working. These feelings are normal during chemotherapy however they may be harder to cope with because you feel tired and your normal routine has changed. Talking about your moods and feelings with close family or friends can be very helpful for you (and for them!).

General advice

Vaccinations

Please consult your nurse or consultant for the latest advice on having vaccinations, including flu and Covid jabs.

Do not have any ‘live virus’ vaccinations while you are on chemotherapy. Live vaccines include:

• Measles, mumps, rubella (MMR combined vaccine)
• Rotavirus
• Chicken pox
• Yellow fever
• BCG
• Shingles (Zostavax®)*
• Oral Typhoid Vaccine
• Flu Vaccine administered as a nasal spray

Dentist

It is important to keep your mouth, teeth and gums in good condition during chemotherapy. It is important that you still see your dentist for your routine dental check-ups. It is best not to have any major dental work, for example having teeth taken out, during your chemotherapy treatment because chemotherapy can make you more prone to infections. If dental work is necessary, you must speak to your hospital team first. You may need a blood test to check if your white cell count is safe.

Alcohol

You can drink a small amount of alcohol if you feel like it. Very few chemotherapy drugs react with alcohol but drinking it may make you feel sick.

Holidays and travel insurance

If you are planning a holiday, please discuss this in plenty of time with the hospital team to enable the timing of treatment if appropriate.

You will need to inform the travel insurance company about your illness and treatments. (They may ask for a letter from your doctor to say that you are well enough to travel). The Leeds Cancer Support Service can signpost you to organisations that have details on travel insurance. If you need to cancel a holiday you can get a letter from the doctor to enable you to make a claim from the insurance.

Other medication

You must inform your hospital team if you start taking any new prescribed or over the counter medication, vitamins or herbal supplements whilst on chemotherapy.

Driving

You can usually carry on driving as normal as long as you feel well enough to do so. Your insurance company might like to know about any changes to your health and the treatment you are having. Occasionally, it may be necessary to contact the DVLA. Your doctor can advise you on this.

Appointments

It is very important to keep your appointments for treatment wherever possible. If you do need to change or cancel your next appointment date, please contact the ward/unit as soon as possible.

If you feel unwell on the day of treatment or pre-assessment appointment please contact the ward/unit before turning away transport or deciding not to come as you may need to be reviewed by a doctor.

You may find it useful to bring a family member or friend to appointments to help remember information and to give you some company. Check with your treatment area about specific visitor information.

You will have regular appointments for reviews and may have scans or other tests to monitor the effect of treatment.

Parking

You are entitled to free parking in the multi-storey car park when you attend the hospital for treatment.

Support for you

It may help to talk about your cancer and treatment and for you to get support from other people outside your family and friends.

This may be:

• Nurses on your SACT ward or a specialist nurse.
• The Leeds Cancer Support Service
• Maggie’s Centre
• Psychologists and counsellors – your hospital team will be able to give you more information, and refer you if needed.
• Support groups and cancer specific helplines, the Leeds Cancer Support Service can provide details of what is available.

Support services

Record sheet

These pages can be used for you or your health professionals to write down information about your treatment for you to remember. For example, this can include a record of any side-effects and when you experienced them and any questions you want to ask when you next attend the hospital.

This form should not be used for urgent information

Acknowledgements

This booklet has been developed by staff in the Oncology Department of the Leeds Teaching Hospitals NHS Trust. We have used plain English throughout to make it as easy to understand as possible.