Chemoradiotherapy for pancreatic cancer

It describes:

• What is Chemoradiotherapy?
• What is Radiotherapy?
• How your radiotherapy treatment is planned and given
• The side-effects that you may experience during and after treatment and how to cope with them
• Useful contacts

We treat each patient as an individual and the effects of treatment may vary from one patient to another. The healthcare team looking after you will explain your treatment and possible side-effects in detail. If you have any questions after reading this leaflet, please speak to the team looking after you or ring the numbers listed at the end of leaflet. Staff will make every effort to meet your individual needs or direct you to the person who can help.

All your radiotherapy planning and treatment will take place in the Radiotherapy Department on Level -2, Bexley Wing, Leeds Cancer Centre, St James’ Hospital (LS9 7TF).

Radiotherapy reception Tel: 0113 206 8940

What is Chemoradiotherapy?

Chemoradiotherapy is a treatment in which chemotherapy and radiotherapy are given on the same day. Chemoradiotherapy is used to help control/slow the growth of pancreatic cancer. Research has shown that chemotherapy and radiotherapy work well together as chemotherapy makes cancer cells more sensitive to the effects of radiotherapy. For some people, this treatment can shrink the cancer enough for possible further surgical options.

Generally patients will first receive chemotherapy. Some time after this finishes, patients will start chemoradiotherapy. This will be between 5 – 30 treatments. Your Clinical Oncologist will discuss with you how many treatments you will receive. Chemoradiotherapy is given each weekday (Monday through Friday excluding bank holidays). However, your treatment may not start on a Monday. Whenever possible you will be treated at the time of day that suits you, but this cannot always be arranged or guaranteed. There may be occasions when you may have a longer stay in the department or be asked to attend at a different time, for example to see your Oncologist. Treatment is usually given as an outpatient.

Capecitabine: Is a chemotherapy drug generally given in the form of a tablet(s). The number of tablets that you need to take will depend on your height, weight and blood test results.Capecitabine tablets need to be taken twice daily on the days you are receiving radiotherapy, 12 hours apart within 30 minutes of eating (i.e. after breakfast and evening meal, e.g. 8am and 8pm). Do not chew or crush the tablets, but swallow them whole with a glass of water.

Capecitabine is then absorbed into the blood stream.

As this is a chemotherapy drug, please remember to:

• Always wash your hands thoroughly before and after handling.
• Keep them in the original package and store safely in a cool dry place at room temperature.
• Keep out of the reach of children.
• Do not share this chemotherapy with anyone else. This has been prescribed specifically for you.
• If you or someone else takes Capecitabine by accident or more than the prescribed dose please contact St James’s University hospital immediately on 0113 243 3144 and ask for the Oncology bleep holder.
• If you miss a dose DO NOT double up the next dose, just take your next prescribed dose as normal.
• If you are sick and think you may have vomited the tablets back up DO NOT take again or double up the next dose.
• Please use gloves to clear spillage of waste (urine, diarrhoea, vomit).

For some patients a different chemotherapy drug called Gemcitabine may be given with radiotherapy. Your Oncologist will discuss with you if you are to have Gemcitabine instead of Capecitabine. Gemcitabine is given once a week, intravenously (into a vein) in the Chemotherapy Unit on level 1 Bexley Wing, St James’s Hospital in Leeds.

What is Radiotherapy?

Radiotherapy is the use of high energy X-rays and other types of radiation to treat cancer. The tissues of the body are made up of tiny building blocks called cells. Radiotherapy causes damage to cancer cells in the treated area. Although normal cells are also affected, they can repair themselves and are able to recover. Radiotherapy is a local treatment. This means it only affects the part of the body being treated. When you are having your radiotherapy you do not feel anything and it does not make you radioactive. You may hear a buzzing noise when the machine is switched on.

It is perfectly safe for you to be with other people, including children and anyone who may be pregnant throughout your treatment.

You will have your radiotherapy on a treatment machine called a linear accelerator, as shown here in the photograph. You will see your radiographers at each treatment session and they will be happy to answer any questions you may have.

Visiting us before your treatment

If you would like to visit the radiotherapy department before starting treatment, please call 0113 206 7603. This visit can be very useful as you can find out more information about radiotherapy.

Who will I meet?

Therapeutic radiographers

Radiotherapy is given by therapeutic radiographers of any gender who are highly trained in the accurate planning and delivery of radiotherapy treatment. You will see your radiographers at each treatment session and they will be happy to answer any questions you may have.

Student radiographers

The radiotherapy department at is a training centre for therapeutic radiographers. They are supervised at all times. If you do not wish students to be present, please speak to a member of staff. This will not affect your treatment or care.

Others involved in your care

You may meet other staff whilst you are coming for radiotherapy. Everyone you meet will introduce themselves, tell you their job title and explain the role they have in your care.

Important advice before your treatment

Pregnancy

It is very important that individuals of child bearing potential are not pregnant at the start of a course of radiotherapy and that they do not become pregnant during a course of radiotherapy because it can have an effect on the unborn child. Use an effective form of contraception, for example condoms, coil, depo injection or contraceptive pill.

For more information see the ‘Contraception and pregnancy during cancer treatment’ leaflet. Please do not hesitate to ask your doctor or nurse if you have any questions or concerns about these issues.

Planning your treatment

Your first appointment for radiotherapy will be a planning appointment. This will be used to gather the information we need to accurately plan your treatment. We will contact you by phone, with an appointment for your radiotherapy planning session. Directions to the hospital and transport arrangements will be discussed with you at this point.

Some tests and scans may be needed to help plan your treatment. We will explain which of these you will need when your appointment is made. You may see your clinical oncologist (or a member of their team) at this appointment. This is an ideal opportunity for you to ask questions. If you have not previously consented to your treatment you will be asked to sign a consent form.

What to bring with you:

• a list of any questions you may have;
• an up-to-date list of all the medications you are taking (including inhalers, sprays, vitamins or herbal products);
• any medication that you may need during your visit;
• Something to eat and drink (for after your scan) and something to occupy you, as this first visit can be quite lengthy (up to two hours).

Your planning scan

Unless there is a medical reason not to, you will be asked not to eat or drink for two hours before your planning scan.

In order to plan your treatment you will have a planning CT scan. This is done on a machine called a CT Simulator, shown here in the photograph. This is a CT scanner that allows images to be sent to the radiotherapy computer planning system.

There will be several members of staff present at your scan: Therapeutic radiographers, and possibly a dosimetrist (the person who will produce the computer plan for your treatment).

You will need to do a ‘breath hold’ procedure where you will be asked to stop breathing for short periods of time when having your planning scan. In this case it means holding your breath on the OUT breath. The radiographers will coach you in this and explain the process. You will not need to breath hold when having treatment, only during the planning process. This technique is used to give the best quality images to show where to target/ deliver your radiotherapy treatment.

To deliver treatment accurately you will be carefully positioned for treatment. The radiographers will draw some marks on you, to be used as a reference for your treatment.

At the end of the scan the skin mark will be replaced by a small permanent mark (tattoo). These marks will be used each day for your treatment. These permanent marks help us to reproduce your treatment with accuracy each day. It also means that you can wash without worrying about your marks coming off.

Contrast (dye)

A special contrast agent, often called a dye, may be used for your scan to make specific organs, blood vessels and/or tissue types ‘stand out’. This can make it easier for the Oncologist to plan your treatment. The dye is given through a small cannula into a vein in your arm. You should tell the radiographer if you have any allergies, but they will go over this before they use any dye. The radiographers will advise you about drinking plenty of fluid after your injection.

Contrast side-effects

You may notice a warm feeling throughout your body and have a metallic taste in your mouth.

You may also feel as if you have passed urine. This will pass very quickly.

There is a slight risk of an allergic reaction to the injection, such as a skin rash, but this very rarely leads to other complications.

The staff in the radiotherapy department are trained to manage any complications and the risk involved is very small.

You will be able to drive your car or go to work after your scan.

Chemotherapy Pre-assessment

Before starting chemoradiotherapy you will be asked to attend a ‘pre-assessment’ appointment. This is on Level 1 in Bexley Wing and usually takes place the day before you start your treatment. You will have a blood test, and someone will explain how to take your tablets. You can then pick up your chemotherapy prescription after this appointment. This allows you to take your first chemotherapy tablets before your first radiotherapy treatment.

Having your treatment

Unless there is a medical reason not to, you will be asked to fast for up to two hours before your treatment.

When you arrive for your treatment you should go to the radiotherapy reception desk at the entrance of the radiotherapy department. On the first occasion you will be given all your appointments and be escorted to the waiting area for your machine.

The radiographers will explain what will happen and answer any questions that you may have.

You will be asked to undress and put on a gown; the radiographers will discuss this with you when you first attend the department. You will need to drink a cup of water shortly before lying down on the treatment couch. The radiographers will position you, and adjust the treatment couch and machine to the correct positions. For the first few treatments and also intermittently during treatment we will use the scanner attached to the treatment machine. This takes images to check the accuracy of the treatment. We then check the scan whilst you are laid on the treatment couch. This could add a few extra minutes to your session.

You will be asked to stay as still as possible during treatment but you should breathe and swallow normally. Once you are in the correct position the radiographers will leave the room to switch on the machine. The radiographers will be watching you on a closed circuit TV (CCTV) monitor during treatment. The CCTV camera is not recording or saving any images. There is also an intercom system so the radiographers can talk to you.

There is music available in the treatment room, please ask the radiographers if you would like this.

The treatment only takes a few minutes but you will be in the treatment room for about 10-20 minutes. The machine stops automatically after your prescribed dose of treatment has been given. The radiographers can stop the machine at any time if needed. The treatment machine makes a buzzing sound when switched on. You do not feel anything.

The radiographers may need to come in and out part way through each treatment.

After the treatment is complete the radiographers will come back into the room and help you off the couch.

On some days the radiotherapy department may be busy and there may be a delay before your treatment.

We will keep you informed of any delays, please see the information screens in the waiting areas. It may be a good idea to bring something to eat and drink with you for after your treatment, including any supplement drinks you have been asked to have and any medication you may need.

There is a restaurant and café available on Level 0.

Your treatments will generally be on the same machine, although there may be days when this machine is being serviced and your treatment will be in a different room.

Clinic appointments

While on treatment you will need a weekly blood test. This will usually be done on a Wednesday in the Princess Royal suite in the radiotherapy department unless you receive weekly Gemcitabine. The results should be available for your clinic review on a Thursday.

You will be weighed weekly prior to your clinic appointment.

You will be reviewed weekly on a Thursday afternoon by the Pancreas Clinical Nurse Specialist (CNS). Generally, in your last week of treatment you will be reviewed by your Oncologist who will explain the next step.

Completing your radiotherapy and follow up

Telephone review: One of the Pancreatic Clinical Nurse Specialists will contact you by telephone a week or two after finishing your treatment. This is to see how you are recovering from the treatment.

CT scan: You will a have CT scan to review how your cancer has responded to treatment. For some patients this may need to be within a few weeks of finishing treatment, for other patients the CT scan will be approximately three months after finishing treatment. Your Oncologist will discuss this with you.

Creon: If you are taking a pancreatic enzyme such as Creon we would advise you to stay on these indefinitely.

Lansoprazole: If you are taking lansoprazole (or an equivalent acid-reducing medication) you should continue taking this for a minimum of three to six months after you have completed your treatment.

Blood sugar monitoring: We recommend you to see your GP to monitor your blood sugars as there is a risk of developing diabetes or having more erratic blood sugar control if you are already a diabetic. If you are not known to have diabetes we would recommend you have a random glucose blood test approximately every three months following chemoradiotherapy.

We will send a letter to your GP informing them you have finished Chemoradiotherapy treatment.

Please ask your GP for further prescriptions for on-going medication after finishing your treatment.

Side-effects from Capecitabine

If you experience this please ring 999 (Ambulance) immediately.

If you experience any of the side effects listed below it is important that you ring immediately St James’s University Hospital 0113 243 3144 and ask for the Oncology bleep holder.

Diarrhoea (loose poo): An Increase of more than four bowel movements (poos) above your normal daily level, or during the night. They might not be watery.

Rare skin reaction: Very rarely indeed (fewer than one in ten thousand patients treated) Capecitabine can cause a severe skin condition with blistering peeling or breakdown of the skin. Sometimes this occurs at the same time as eye problems and/ or flu like symptoms.

Vomiting (being sick): If you vomit more than once in any 24 hour period and this is not controlled by your normal anti-sickness medication.

Fever or infection: If you have a temperature of 38c (100f) or more, or show other signs of infection.

If you are struggling with any of the following, please contact your radiographers/CNS at the next opportunity.

Soreness and redness of hands and feet (hand-foot syndrome / Palmar planter syndrome): Pain, swelling, redness, broken skin or pain on the palms of hands and/or the soles of feet.

Nausea: (feeling sick) this may give you a reduced appetite, or finding it hard to eat and drink.

Mouth ulcers: If you have pain, redness, swelling or sores in your mouth, and you are finding it hard to eat and/or drink. Please inform your healthcare team.

If you develop any of these problems during treatment, it is important that you notify your medical team as soon as possible. Supportive medications can be provided. In some cases the Capecitabine dose may be reviewed and modified.

Some side-effects are common, whilst others are rare. The area treated will affect which side-effects are most likely to happen to you. Your Oncologist will discuss this with you. If you develop any radiotherapy side-effects you will be given advice and support by your healthcare team.

Short term side-effects from radiotherapy

Most side-effects are common and are temporary. Side-effects tend to build up from about the second week of treatment and will be at their worst at the end or just after treatment has been completed. They generally last a number of weeks or months after treatment has finished. There can be some rare but serious side effects which your oncologist will discuss with you.

Change in bowel habits: This may occur because of inflammation of the bowel, but can be controlled with medication. You may also experience an urgent need to open your bowels, increased wind or occasional abdominal cramps. It is important to keep eating and drinking as normally as possible, but you may need to avoid high fibre foods. If you experience diarrhoea or constipation please tell a member of your treatment team.

Skin reactions

The skin in the treated area may become inflamed and/or sore from the second week of treatment. It may become dry and itchy.

Skin reactions are unusual with the use of modern radiotherapy techniques to treat pancreatic cancer.

Avoid hair removal where possible, including shaving, waxing, cream and lasers unless advised otherwise by your consultant, nurse or radiographer.

Before you start your treatment, a radiographer will explain what could happen to your skin and how to look after it. They will also give you a leaflet to take home. If you are concerned about your skin reaction please talk to your radiographers or contact the review clinic nursing staff in the Princess Royal Suite, telephone: 0113 206 7587.

Tiredness (fatigue)

Nearly all patients having radiotherapy will feel tired. Be prepared to take things easy during treatment and allow for extra rests. See the booklet ‘Fatigue and pancreatic cancer’ from Pancreatic Cancer UK for tips and advice in dealing with fatigue. For support with your fatigue please ask a member of staff.

Things you can do to help include:

• Gentle exercise can help reduce the symptoms of fatigue.
• Having enough to drink can prevent tiredness from dehydration.
• Small meals or snacks eaten more often than three times a day may be easier to face.
• Try to get a good night’s sleep where possible, a daytime nap may help.
• Try to ‘pace’ yourself, listen to what your body is telling you, rest if you need to.
• Pick out the things that you enjoy and try to accept help with other tasks.
• Little and often is the rule of thumb.

Nutrition

It is important that you are well nourished and drink plenty of fluids during your treatment in order to keep you healthy and to help your body to heal.

You may see one of our specialist dietitians before, or during your treatment.

Research at Leeds Cancer Centre

Leeds Cancer Centre is a major centre for cancer research. You may be asked if you would like to help with some of the clinical studies. You are under no obligation to take part in any trials, and your treatment will not be affected in any way if you do not wish to take part.

If you do take part in a clinical trial you may meet a research nurse or radiographer who will be helping to run the trial.

Further information and support

If you have any questions please ask your hospital team. We all have our own ways of coping with difficulties. Some people have a close network of family and friends who provide emotional support. Others would rather seek help from people who are not involved with their illness.

The following are also available as sources of information and support that you may wish to use.

Clinical Nurse Specialists (CNS)

Your CNS is available to discuss any aspect of your treatment with you. This is to offer support and advice about the practicalities and effects of your treatment and answer any questions you may want to ask.

Your CNS will also assess and discuss any physical, psychological, social, occupational and spiritual needs that you may have. They can refer you to other services if needed, for instance, benefits advice.

You should be given a ‘key worker’ as a contact for support through your treatment; this is usually your CNS.

Name of key worker:
Pancreatic Cancer CNS number: 0113 206 8601

Macmillan Specialist Radiographer and Macmillan Radiotherapy Nurse Specialist

Sometimes people need more help if they are feeling depressed, very anxious or are having problems with their treatment. If this is the case you may benefit from seeing the Macmillan radiographer or nurse specialist. Your oncologist, radiographer or nurse can refer you at any point before or during your treatment.

Local Support Services

Leeds Cancer Support

Leeds Cancer Support complements care provided by your clinical team. We offer access to information and a wide range of support, in a welcoming environment for you, your family and friends.

We can be found in the information lounges in Bexley Wing and also in the purpose built Sir Robert Ogden Macmillan Centre (behind the Thackray Medical Museum).

The Sir Robert Ogden Macmillan Centre

This centre offers a variety of free health & wellbeing and supportive therapies for patients, their family members and carers. These include hypnotherapy, mindfulness coaching, acupuncture (for hot flushes) and pilates.

Contact numbers for Leeds Cancer Support

Information Lounge Level -2 Radiotherapy Department
Open from 8.00am – 6.00pm Tel: (0113) 206 7603

Information Centre Level 1 Outpatients Department
Open from 9.00am – 4.00pm. Tel: (0113) 206 8816

Sir Robert Ogden Macmillan Centre
Open from 9.00am – 4.00pm. Tel: (0113) 206 6498

All the above services can be emailed on:
[email protected]

Maggie’s Centre

If you or someone you love has cancer you may have lots of questions. Maggie’s is a warm, welcoming place where you can meet people who are experiencing similar things to you.

You don’t need an appointment and all support is free.

PANPALS, a support group for people with pancreatic cancer and their loved ones, meets monthly at Maggie’s. For more details, please phone: 0113 457 8364 or
email: [email protected].

Open Monday to Friday 9.00 am – 5.00pm. Tel: 0113 457 8364

Address: St James’s Hospital (next to the multi-storey car park), Alma Street, Leeds LS9 7BE

Email: [email protected]

www.maggies.org

National Support Organisations

Macmillan Cancer Support

Freephone 0808 808 0000 8am- 8pm seven days a week.
Website: www.macmillan.org.uk
A textphone service for deaf and hard of hearing people on: 18001 0808 808 0000.

Stopping smoking

NHS Free Smoking Helpline: 0300 123 1044 Monday to Friday 9am to 8pm, Saturday and Sunday 11am to 4pm.
Website: www.nhs.uk/smokefree

Live Through This

A cancer support and advocacy charity for the LGBTIQ+ community.
Email: [email protected]
Website: https://livethroughthis.co.uk

Pancreatic Cancer UK

Dedicated UK pancreatic cancer charity.
Support Line Freephone: 0808 801 0707,
Mon – Fri 10am – 4pm
Email: [email protected]
Website: www.pancreaticcancer.org.uk

Car Parking

When you are coming for radiotherapy planning and treatment your parking is free in the on-site multi-storey car park. Please ask for more information at the radiotherapy main reception desk.

Hotel Bexley Wing

The hotel is located on the 8th floor of Bexley Wing and offers 19 twin rooms and 1 single room. All have en-suite, tea and coffee making facilities, a mini fridge, towels, hairdryer and digital television. There are two rooms with wheel chair access and a wet room.

Patients are able to stay free of charge. There is a charge for relatives if they are staying in their own room.

There are no cooking facilities in the hotel.

The Bexley Wing canteen is open Mon – Fri (closed during weekends) for you to purchase breakfast and lunch. This canteen closes at 3pm Mon – Thurs, 2pm on Friday.

There are no staff after 4pm until the next morning in this facility.

For further details please contact the Hotel Co-ordinator on 0113 206 7687.

Out of hours please contact the Non-Surgical Oncology Nurse Practitioner through main switch board on 0113 243 3144.

How to find us

St James’s University Hospital – site plan