My Chemotherapy Record - NHS Wales RECOR… · CHEMOTHERAPY Record Booklet Please bring this...

My Chemotherapy Record

CHEMOTHERAPY Record Booklet

Please bring this booklet to all hospital appointments and any admission to the

Accident and Emergency Department

Show the booklet to your General Practitioner, Nurse or any other Healthcare

Professional involved in your care when you see them

NAME…………………………………………………………………………………………………

HOSPITAL……………………………………………………………………………………………

HOSPITAL NUMBER ……………………………………………………………………………….

CONSULTANT……………………………………………………………………………………….

CONTENTS

How to contact us

Your chemotherapy details

What is chemotherapy?

Chemotherapy side effects

Effects on your blood

Treatment records and side effects diary

Non chemotherapy drugs record

Information for relatives and friends

Advice to General Practitioners and A&E staff

How to contact us if you have a problem associated with your Chemotherapy

MONDAY TO FRIDAY 9.00 A.M. – 5.00 P.M.

Singleton Hospital 01792 205666 Morriston Hospital 01792 702222

Glangwili Hospital 01267 235151 Prince Philip Hospital 01554 756567

Princess of Wales Hospital 01656 752752 Withybush Hospital 01437 764545

Neath & Port Talbot Hospital 01639 862000

Bronglais Hospital 01970 623131

TELEPHONE AND BLEEP NUMBERS

WARD ……………………………….. Tel: ……………………………………

NURSE SPECIALIST ……………………………… Tel:…………………..Bleep…………..

……………………………….. Tel:…………………..Bleep…………..

CONSULTANT ……………………………….. Tel:………………………………………

………………………………. Tel:………………………………………

WEEKEND AND NIGHT TIME

Tel:……………………………………………………

Tel:…………………………………………………….

Tel:…………………………………………………….

COMMUNITY TEAM

GENERAL PRACTITIONER Tel………………………………………..

DISTRICT NURSE Tel………………………………………..

PALLIATIVE CARE NURSE Tel………………………………………..

OTHER Tel………………………………………..

Your Chemotherapy details and information

CHEMOTHERAPY PROTOCOL………………………………………………..

………………………………………………………………………………………

……………………………………………………………………………………….

DIAGNOSIS ……………………………………………………………………….

TRIAL CODE (If applicable)……………………………………………………...

FREQUENCY OF TREATMENT…………………………………………………

PROPOSED NUMBER OF TREATMENTS……………………………………….

DATE TREATMENT STARTED…………………………………………………..

DRUG SENSITIVITIES……………………………………………………………..

……………………………………………………………………………………….

……………………………………………………………………………………….

CONTRAINDICATED DRUGS DURING TREATMENT………………………

………………………………………………………………………………………..

………………………………………………………………………………………..

BLOOD GROUP ……………………………………………………………………..

SPECIAL BLOOD REQUIREMENTS………………………………………………

VENOUS ACCESS DEVICE…………………………………………………………

CHEMOTHERAPY

What is chemotherapy ?

When we offer you chemotherapy, it means we want to treat your cancer using drug

treatment. There are many different chemotherapy drugs in common use. Sometimes the

drugs are given singly and sometimes in a combination.

The decision about which treatment to offer you will be based on many factors but will mainly

depend on where your cancer is.

How and where will the treatment be given ?

Most chemotherapy is given through a drip into a vein in your arm. Sometimes it may be

necessary to use a semi-permanent line which is inserted into a major vein e.g. Hickman Line,

PICC line or Porta-cath (if you require such a line this will be explained to you in more detail).

Chemotherapy may also be given in other ways – for example as tablets or using portable

pumps. This may make it possible for you to receive your treatment at home.

Many of our treatments can be carried out in the Chemotherapy Daycare Unit but some more

complex treatments must be given as an inpatient.

How will you feel while you are having chemotherapy ?

Some chemotherapy drugs have very few side-effects and you may be able to carry on living a

normal everyday life between visits. Other treatments may be more disruptive. It depends

on the type of chemotherapy you are having – each drug is different.

Some of the more common side-effects of chemotherapy are discussed in the next few pages

but for more specific information about your particular treatment or side effects, please see

the individual fact sheets which your Chemotherapy Nurse will supply. These go into more

detail for each chemotherapy drug you receive.

SOME OF THE MOST COMMON SIDE EFFECTS OF CHEMOTHERAPY

Nausea and vomiting (feeling and being sick)

Not all chemotherapy drugs will make you feel or be sick. When we use the ones that do, we

always give anti-sickness drugs to try to prevent the problem. Improvements in these drugs

over the last few years means that many patients do not feel sick at all, or only have minor

problems. If you are given anti-sickness tablets to take for a few days after your treatment,

do make sure you take them as prescribed. It’s much better to prevent sickness before it

starts.

If despite this you do feel sick after chemotherapy, let us or your GP (family doctor) know.

We can usually try different anti-sickness drugs to help. You could also try ‘sea bands’.

These are elastic wrist bracelets which you can buy from your local chemist. They have a

small plastic’ bobble’ which presses on your anti-sickness accupressure point.

Hair Loss

Many chemotherapy drugs do not cause hair loss but others cause hair thinning or even

complete hair loss. Again, it all depends on which chemotherapy drugs you are having. Your

doctor and nurses will be able to tell you how likely hair loss is with your treatment. If it

happens, hair loss will usually start about 2-3 weeks after the first treatment. It is

important to say that the hair always grows back after the chemotherapy stops.

For some people, the thought of losing their hair temporarily is very upsetting. If your

chemotherapy is likely to cause hair loss, we will be able to arrange a wig fitting for you.

Some patients use scarves, turbans or colourful hats to help cope until their hair comes back.

Sometimes we can try and reduce hair loss by using ‘scalp cooling’. This means wearing a cold

pack on your head for roughly 2-3 hours at the time of treatment. This is only effective for

some chemotherapy and may not be advisable in some cancers. Ask your Chemotherapy Nurse

for more details.

Tiredness

Probably the most common side-effect of chemotherapy is tiredness. Again, this affects

some people more than it does others. If you do feel tired or lethargic, try to balance

getting plenty of rest with making sure you carry on with some of your usual activities. Do

what you feel up to. There are few restrictions on work, sport or social and sexual activities,

though it is common to feel less enthusiastic about these than usual.

Fertility

It is important that you do not become pregnant or father a child whilst on chemotherapy as

the drugs may damage your unborn child. Chemotherapy often makes you temporarily

infertile but this can be unpredictable, so it is very important that you continue to use

contraception. Sometimes the infertility is permanent. If you are concerned about this ask

about sperm storage and egg conservation before treatment starts. Women who are still

having periods may notice changes in their normal pattern. Sometimes the periods stop or

there may be less blood loss.

Please do not hesitate to discuss these issues with your Consultant or Chemotherapy Nurse.

Taste changes

Patients often tell us that chemotherapy gives them a strange taste in the mouth.

Sometimes food may seem tasteless and it is quite common for tea and coffee to taste

different. This is usually temporary and your taste should return.

Sore mouth

Chemotherapy can make your mouth more sensitive and it may become sore or infected.

Some people find that they have mouth ulcers. Regular brushing with a soft toothbrush and

fluoride toothpaste after meals and before going to bed is very important and is the best way

to prevent infection.

We often give patients mouthwashes to use to prevent soreness and infection.

However, if your mouth does become sore, please discuss with your doctor or nurse. It might

also be a good idea to go for a check up at your dentist before you start your chemotherapy.

Altered Bowel Habit

Chemotherapy may affect your bowels, so your normal bowel habits may alter – for example

you may get diarrhoea or constipation. Please tell your doctor or nurse if this becomes a

problem – don’t suffer in silence as it is usually very easy to resolve !

Some chemotherapy drugs may occasionally cause severe diarrhoea which can make you very

unwell if not treated. If this applies to you, you will be given specific instructions and a supply

of tablets to take should this occur.

Appetite

There are few restrictions on what you can eat and drink whilst on chemotherapy. A ‘little of

what you fancy’ when you fancy it is always a good policy. Alcohol is generally also allowed –

in moderation ! But do check with your pharmacist or nurse first.

Haematology patients should avoid unpasteurised dairy products and take away food and some

patients may be asked to follow a ‘clean food diet’. You will be given this information

separately.

Phlebitis (sore veins)

Some drugs have to be injected very carefully into your veins otherwise they may cause

damage to your skin. This is why the nurse takes such care with the injections. You may

experience some discomfort and hardening of a vein which has been used but if you develop

severe pain and redness at an injection site contact the Chemotherapy Nurse.

THE EFFECTS OF CHEMOTHERAPY ON YOUR BLOOD

One thing that all chemotherapy drugs have in common is they tend to lower your resistance

to infections. This is because they lower your blood count – especially your white blood count.

When you have fewer white blood cells than usual your body is less able to fight infections.

This does not mean that you need to isolate yourself from other people, though it is sensible

to avoid close contact with those who have obvious coughs, colds, flu and so on. It does mean

that you should take it seriously if you develop an infection.

What should you do if you get an infection ?

If you develop any of the following while you are on chemotherapy – and for four weeks

afterwards – you should ring us for advice immediately using the contact numbers at the

front of this booklet:

A temperature (above 38ºC on one occasion or above 37.5ºC on two occasions

taken half an hour apart)

A sore throat

A chesty cough

A stomach bug or upset stomach

A urine infection (cystitis)

Feeling generally unwell, achy or flu-like

Redness or discharge around a Hickman or other central line

Shivery episodes after flushing a Hickman or other central line

DON’T DELAY!

It is very important to act straight away. Always contact us first using the telephone

numbers at the front of this booklet. We may ask you to see your GP.

Other effects of a low blood count

Chemotherapy can also lower your ‘platelet count’. Platelets are blood cells which help clot

your blood. With most chemotherapy low platelets are unlikely to cause a problem, but if you

have any unusual bleeding or bruising please let us know.

Sometimes chemotherapy can also lower your red blood count. This tends to happen slowly

over the course of several treatments. A low red count can make you feel tired and short of

breath. From time to time we offer patients blood transfusions to correct a low red cell

count.

Blood tests during chemotherapy

We will always ask you to have a blood test before going ahead with each treatment to make

sure your blood has recovered after the last chemotherapy. Sometimes it is worth having

these blood tests done a day ahead at your local hospital as this will save you having to wait

for the results on the day of treatment. Your doctor or Chemotherapy Nurse will discuss

this with you.

(Please read the information sheet about your treatment for more specific potential side

effects)

SAFETY AND HYGIENE

Chemotherapy drugs can affect normal cells in the body as well as those cells they are meant

to kill. Because of this we ask you to take some simple hygiene precautions to limit exposure

for anyone handling them. This is especially important if relatives or carers will be handling

your drugs. Pregnant women should avoid handling them altogether.

Chemotherapy drugs will normally have a sticker on the container saying ‘cytotoxic agent –

handle with care’ or something similar.

Chemotherapy tablets and capsules

If you are taking tablets or capsules, do not touch them directly if at all possible

but tip them gently from the bottle onto a spoon or medicine measure.

Swallow tablets and capsules whole with plenty of water and DO NOT CHEW OR

CRUSH unless specifically told to do so.

Be careful how you store and dispose of any containers. Store them well out of

the reach of children in a cool, dry cupboard unless told otherwise by your

pharmacist.

Any unused drug should be returned to the hospital Pharmacy or your local

chemist for safe disposal. Empty containers can also be returned to the

Pharmacy or put carefully into the household rubbish bin.

Always wash your hands after handling any chemotherapy drugs.

Injections and Pumps

If you are having chemotherapy by injection at home, the nurse looking after you

will make sure that any hazardous material is disposed of carefully. However, if

you have a spillage of drug, for example, from a pump, follow the advice given

below.

What to do if your chemotherapy leaks

It is very unlikely that your chemotherapy will leak whilst you are wearing your

pump

If you notice a leak, find an empty plastic bag such as a carrier bag

If you have any disposable plastic or household rubber gloves available, wear

these.

Sit down

If you have a Hickman line, close the clamp

If you have a Paragon pump, close the clamp on the line

If you have a Walkmed pump, switch it off

Wrap the pump and the bum bag in the plastic bag

DO NOT detach the line from your catheter unless you have been shown how to

do so

Contact the Chemotherapy Unit for advice.

If the chemotherapy has come into contact with your skin, wash the area with

plenty of soap and water, immediately.

If the chemotherapy gets onto your clothes, they should be washed thoroughly

straight away. Use your washing machine or handwash with soap and plenty of

water.

Always wash your hands after dealing with chemotherapy, even if you have worn

gloves.

TREATMENT RECORD

Date……………………

Results

Hb Regime

WBC

Plts

Neuts Cycle No.

Chemotherapy (IV) Chemotherapy (oral)

Other medication

Special instructions/comments

Blood tests needed before next treatment

Test Date Place of test Form

Next chemotherapy due

SIDE EFFECTS DIARY – Please circle

Type None Mild Moderate Severe Very severe

Nausea None Eating almost as

normal

Can eat but

much less

than normal

Not really

able to eat

Vomiting None 1 episode in 24

hours

2-5 episodes

in 24 hours

6-10 episodes

in 24 hours > 10 episodes

Constipation None Bowels opened

almost as normal

Bowels

opening but

much less

than normal

Bowels not

opened for >2

days; feeling

bloated

Bowels not

opened > 4

days; in pain

Diarrhoea None Less than two

days

More than

two days Intolerable

Bloody, or in

hospital

Mouth Normal Sore Ulcers, but

eating

Eating liquids

only Cannot eat

Hair No change Minimal loss Patchy loss Complete loss

Tiredness;

energy levels None

Symptoms; normal

activity

Rest less

than half of

each day

Rest more

than half of

each day

Bedbound

Nerves and

weakness Normal

Tingling/numbness

T/N

Severe T/N

or mild

weakness

Intolerable

T/N or

marked

weakness

Pain None Mild Moderate Severe Intolerable

Other Mild Moderate Severe Very severe