Your guide to Bone Marrow Transplantation

Information for patients

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Contents

Introduction 5

Facilities & Contacts 7

Useful telephone numbers 8Facilities at St James’s Hospital 8Ward 89 information 10Visiting information 12Guidelines for children visiting the ward 15

Overview of Treatment 17

First visit 18Treatment before the transplant 19Staying in hospital 20Isolation 21Tests 22Going home after the transplant 23Attending clinic 24Summary 27

Why do I need a transplant? 29

Blood and its function 30Function of the bone marrow 30Why have a bone marrow transplant? 31What is involved in a bone marrow transplant? 32Types of transplant 34

What happens first? 37

Pre-transplant investigations 38Preparative therapy 39Radiotherapy 40

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Chemotherapy 42Other medication 43Central line (Hickman Line) 46

Side effects of treatment 47

Side-effects of radiotherapy 48Side-effects of chemotherapy 49Side-effects of bone marrow suppression 50Infection 51Gastrointestinal side-effects 55Graft verses host disease (GVHD) 56Hair loss 59Psychological impact 59Infertility 60

Looking after yourself 63

Self-medication 64Diet 64Personal hygiene 66Looking after your central line 69Psychological health 70

Life after treatment 77

Socialising after transplant 78Fatigue 79Emotional reaction to the end of treatment 81Exercising 82Driving 83Diet 83Eating out 84Haircare & skincare 84

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Looking after your mouth 85Sex life 86Hormone replacement therapy 87Pets 88Returning to work 88Holidays 89Vaccinations 90

Support 93

Haematology Social Work Service for Adults 94Leeds Cancer Support 95Chaplaincy service 96Psycho-Oncology service 97What it’s really like 98Frequently asked questions for relatives 99Questions & comments page 102

Preparing for going home 105Preparing for going home after your transplant 106If you are unwell after going home 106Your clinic visits and medication 107General advice 110Travelling abroad 111At home 111

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Welcome to the Bone Marrow Transplant (BMT) Department at St James’s University Hospital (SJUH or ‘Jimmy’s). The BMT Department is situated on Ward 89 in the Bexley Wing.

This booklet has been written for you. It has been developed to help you to prepare, assist you during your transplant and guide you through each stage of treatment. It reinforces information that you may already have been given about your illness and aims to explain what a bone marrow transplant will mean for you.

We appreciate the amount of information that you receive can often be bewildering, especially medical and technical information. This booklet has been split into sections for ease of reference during your transplant and there is a ‘notes’ section at the back for you to write down any particular things you want to remember or questions you need to ask.

Nevertheless there is a lot of information here and not all of it will be relevant to you. Don’t feel you have to read it all in one go, have a look at the overview (page 17) and then pick out the reference sections that seem to be the most helpful. You might want some advice from your Consultant on the bits to read first.

There are contacts at the end for giving comments or feedback about this booklet (page101).

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Facilities and contacts

This section includes • Useful contact numbers

• Facilities available at St James’s Hospital

• Ward 89 information

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Useful Telephone NumbersSt James’s switchboard (0113) 243 3144

Ward 89 (Bone Marrow Unit) (0113) 206 9189

(0113) 206 9289

Transplant co-ordinator - Karen Benn (0113) 206 7828

Consultant’s secretary - Trisha Pound (0113) 206 8433

Clinical Nurse SpecialistKathleen O’Conner (0113) 206 8864

Long Term Follow-Up Clinical Nurse Specialist Suzanne Liebersbach (0113) 206 7892

Robert Ogden Macmillan Centre (0113) 206 6498

Allogeneic information exchange www.allinex.orgthis was created by the Leeds Teaching Hospitals and guides you through all steps of the transplant process.

Facilities at St James’s Hospital

Parking

Parking is available in the multi-storey car park behind Bexley Wing. A temporary parking permit may be available unfortunately only one permit is allowed per family but it can be shared with multiple car registrations. Please speak to Karen Benn, Transplant Co-ordinator for all parking related issues (see phone number above).

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Transport

Transport to and from the clinic can be arranged for you. Telephone the clinic clerk on 0113 206 7684 or 0113 206 7774 or book at reception after your appointment. Please give at least three days notice for the transport to be booked.

Relative/Patient Hotel

There are facilities (subject to availability) for your relatives to stay in the hotel situated on the 8th floor of Bexley wing. They have single and double rooms each with en-suite, tea and coffee making facilities and digital television. For further details of charges and booking please contact the Hotel Co-ordintator on 0113 206 7687.

Food

All catering for relatives is situated on Level 0.

The restaurant is open Monday to Friday 8.30am-3.30pm. Breakfast 8.00-11.00am, hot lunch 11.30am-2.00pm, hot beverages/sandwiches 8.30am-3.30pm.

There is also a café bar and a shop. Hot and cold beverages and sandwiches are available from all.

Outside these hours hot/cold food and beverages are available from the Feastpoint machine in the atrium on Level 0 or over in the Gledhow Wing.

Cash Machine

A cash dispensing machine is situated at the side of the patient transport desk next to the canteen on Level 0.

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Smoking

St James’s operates a no smoking policy. Therefore no smoking is allowed in the hospital grounds.

Ward 89 Information Ward 89 is situated on Level 3 in the Bexley Wing. It consists of four ‘isolation’ rooms, within a 20 bedded haematology ward. Visiting times are 2-8pm.

There is a security system in operation on the ward and visitors must press a ‘buzzer’ at the entrance to the ward and then speak into an intercom to gain entry to the ward. Hand washing facilities are provided just inside the entrance. It is compulsory that all visitors clean their hands as advised by the information cards provided, to reduce the risk of spreading infection.

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Telephones

Enquiries to the Unit are welcomed at any time so please feel free to phone the nursing staff and they will be happy to give you an update. Mobile phones can affect the operation of some machinery so please check with your nurse about whether you can use your phone.

Facilities in Your Room

There is a TV and a radio/CD player for your room. All rooms are en-suite with shower facilities.

Refreshments

There is a small fridge in your room to store supplies of cold drinks/snacks. Hot drinks and cold food may be consumed by your visitors. There is a kettle in your room. Tea and coffee are provided at set times but we

ask that you provide your own tea and coffee outside these times.

Internet access

Unfortunately the signal for most internet providers is very poor. The best chance of a signal is using a Dongle however this will not guarantee a good service.

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Toilet Facilities

Your visitors can use the toilets situated outside Ward 89.

Laundry

It is advisable that you arrange for a relative/visitor to do your washing, and if friends offer to do it, please do take them up on it.

Often your closest relative will be busy visiting you and it can reduce some of the pressure on him or her to have help from others. If possible, bring clothing that will be comfortable and which will withstand a high temperature wash. There is no need to buy new clothing.

Washing instructions:

1. Wash clothes at 60oC; allow to dry thoroughly. Iron them as this kills further bacteria.

2. Clothes must then be placed in a clean bag (not sterile) in order to keep them clean.

Visiting Information You can have three visitors only in any one day. Visitors can be any family members or friends as long as they are ‘infection free’. You might want to choose at least one or two ‘key’ visitors for purposes of continuity. We advise against young school age children visiting - you can discuss this at your initial visit (see guidelines for children visiting on page 15).

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On occasions visitors may be asked to leave the cubicle e.g. ward rounds, when the doctors will talk to you and examine you. If you would prefer to have a relative or friend present during the ward round then please let the medical staff know.

All visitors must follow strict hygiene procedures - thoroughly washing hands (‘scrubbing-up’), removing jewellery and putting on a plastic apron. If possible please leave jewellery at home and remove your watch when washing your hands.

Please check the information boards by the sinks and also on your relatives door.

Certain items can be brought in by visitors - magazines, cards, games etc. Cuddly toys may not be allowed - please check with the nursing staff.

Guidelines for relatives visiting patients in isolation

Visiting times are 2-8pm.

• Please remember that only three people are permitted to visit per 24 hours. This is to reduce the risk of infections to the patient!

• On arrival at the waiting area at the main entrance to Wards 88 and 89 you will need to wash your hands at the sink provided for this purpose.

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• Remove all jewellery (watches/rings) except wedding rings, it may be easier to remove them and leave them at home!

• Wet hands up to elbows. Apply cleansing lotion via the wall dispenser. Wash your hands and forearms. Dry your hands and forearms well using paper towels.

• Please read wall posters as these will advise you about effective hand washing. Do not hesitate to ask staff regarding any of the above points.

Entering the unit

Remove ‘outside’ clothing (including jumpers/ cardigans) and leave outside the room. Handbags may be kept inside the rooms. If you are a regular visitor, you may wish to bring new slippers to wear whilst you are in the unit.

Before entering patient’s room apply alcohol gel from the wall dispensers available in the ward corridors. In some cases you will need to wash your hands again with liquid cleanser instead of using the gel - check for any instructions on the patient’s door.

Put on a plastic apron (kept outside the patient’s room). On leaving the patient’s room you must wash your hands. Each time you leave and re-enter the unit you will need to wash your hands again and apply a new apron.

PLEASE help us to look after all our patients by remembering to wash your hands!

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Guidelines for children visiting the ward Generally ALL children are discouraged from visiting the unit because of the infection risk but babies under one year are not permitted to visit the ward. The idea of being separated from your children might be difficult so don’t forget you can have regular contact whilst you are on the ward by telephone.

When the patient is in isolation, children under the age of 11 years may not enter the ward area. This is because children under 11 are more likely to be in contact with infectious diseases such as chicken pox, measles, coughs and colds and may transmit these infections to the patient.

Keep children supervised at all times: if children are visiting please keep them in the patient’s room and do not let them run around the ward. All children over 11 years may visit as normal adults but are counted as part of the three visitors per 24 hours.

If there are any doubts or concerns please ring the ward before visiting (to speak to either the nursing staff or the patients themselves) to be advised if visiting is allowed. Sometimes the patient may be having investigations and may need extra privacy.

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An overview of your treatment

This next section is written to give you an overview of the whole treatment process.

There is further detailed information later in this booklet.

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First visitAfter you have been referred to our unit you will be given an appointment to attend for an ‘initial visit’ at the transplant clinic. We encourage you to bring along a relative or friend to this visit. Dr Cook, Dr Gilleece and Dr Kallmeyer are the Bone Marrow Transplant Consultants and they will discuss your transplant with you at your initial visit.

The main purposes of this visit are to:

• Get a detailed history of your health.

• This helps us to estimate how safe and effective the treatment will be for you.

• It is helpful if you have made a list of previous health problems, allergies and any treatments that you have had before you come to clinic.

• We will also need to make a note of any family illnesses eg hypertension, stroke, raised cholesterol and cancer, since they may be relevant to your health during the transplant.

It should be stressed that this meeting is not only for the medical staff to assess you, but also for you to:

• Discuss the transplant with the medical team.

• Ask questions.

• Make the necessary decisions regarding the transplant.

• You may be at your initial visit appointment for a few hours. You will have a number of blood tests at the initial visit.

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You will also be booked for further investigations. See the Pre-transplant Investigations section, page 38 for further information.

Treatment before the transplantBefore you have your transplant, you will need to have some treatment to prepare your body for the transplant or ‘Preparative Therapy’. This aims to kill the diseased cells and suppress the immune system so the transplant is more likely to be accepted.

Preparative treatment can include chemotherapy, other medications and radiotherapy depending on your disease, previous treatment and current state of health. The type of preparative therapy also depends on the type of transplant.

Dr Cook and Dr Gilleece will see you in the clinic during the pre-transplant period. If you need to speak to them at other times an appointment can be made for you. You can contact their secretary on:

Tel: 0113 206 8433

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Staying in hospitalThe Bone Marrow Transplant Unit (BMTU) is on Ward 89, Bexley Wing, St James’s Hospital. This next section will give you a broad idea of what will happen and the facilities.

When you come into the ward, you will have your own room. This is to reduce the risk of infection from coming into contact with other patients and visitors.

The preparative therapy reduces the body’s immune system, so it is less able to fight off infection. It can also cause temporary changes in the body leaving it more open to infection.

The day that you are given the transplant is called ‘Day Zero’. On this day, you will be connected to a drip which will supply you with the donor stem cells.

However the impact of the transplant will appear over the next 4-6 weeks during which time you will need to be in strict isolation.

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IsolationCertain precautions have to be taken to ensure the risk of infection to you is minimised. These are outlined below:

• The ward has been specially designed so that clean air is constantly circulated to reduce the risk of infection.

• Entry is restricted so that anyone with a suspected infection is not allowed into the room. This is to minimise any risk of infection being passed to you.

• Your room will contain a locker, TV/DVD, fridge, kettle, comfortable chair, CD/radio cassette, shower and toilet. Other items should be kept to a minimum to reduce the collection of dust and allow the room to be cleaned easily.

• Photos / pictures and cards can be displayed - this can make your room feel a little more like your own and make it a little brighter! Feel free to bring in your own duvet cover (which will need to be changed twice a week) and pillow cases (which will need to be changed daily).

• Unfortunately, you can’t have flowers or plants brought in to your room or anywhere else on the ward as they are an infection hazard.

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TestsWhilst you are on the ward you will see the Consultants at least twice weekly. You will also be seen daily by the Unit’s Specialist Registrar, one of the medical team.

Your full blood count and blood chemistry will be checked every day to enable us to give you any replacement fluids or blood products. Other blood tests will be done routinely, for example, to check for signs of infection or for levels of medications in your blood.

A Chest X-ray and heart trace (ECG) may be done on a weekly basis to ensure early detection of any problems, particularly infection. Its important to monitor how your body is coping after the transplant as there are several important side effects to manage.

Please see the Side-Effects of Treatment section, page 47 and the Looking after Yourself section, page 62 for more information.

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Going home after the transplantOnce your white cell count has risen to a satisfactory level you will be allowed out of isolation and possibly home.

This depends on a number of factors:

• Are you eating and drinking?

• Are you still receiving medication via a drip?

• Is your temperature settled?

• Is your blood count settled - do you still need transfusions.

• Do you have any other problems?

Once you go home, your recovery will be closely monitored, as it will be several months before your immune system recovers fully. In these crucial months it is vital that you continue to look after yourself and try to avoid sources of infection.

The thought of going home again can be quite bewildering or even frightening - it is normal for you to feel this way after a long period of isolation. On the other hand you might feel really excited about going home and getting back to familiar surroundings. It is important to strike a balance. Whilst it is necessary for you to be careful, it is also important that you try and get back to a ‘normal’ life.

General cleanliness is important but it is not necessary to continue with the strict precautions taken in the Unit, for example, your bed linen can now be changed weekly. There is a lot more advice and tips in the ‘Life after treatment’ section on page 76.

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Attending clinicIn the first few months after your transplant, you will need to be seen regularly (weekly initially) in the out-patient clinic.

You will remain under the care of the transplant consultants at the Early Discharge Clinic on Wednesday afternoons.

At each clinic appointment you will have the following:

• Blood tests will be taken for your ‘full blood cell’ count and salts (e.g. potassium, magnesium) to be checked as well as other tests.

• A particularly important test is the measurement of your ‘ciclosporin’ levels (please see the section ‘Side-effects of Treatment’ page 47 for more details about this medication). The result of this test allows the medical staff to prescribe the appropriate dose.

It is important to remember not to take your morning cyclosporin dose before you attend clinic as this will interfere with the laboratory measurement of the drug.

Please bring your self-medication form or keep a list of drugs that you are taking on your mobile phone or a written sheet would be useful.

• Your weight will be measured.

• Observations will be measured e.g. your pulse rate, blood pressure and temperature.

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Medical review

You will then see a doctor who will need to know how you are feeling and whether you have had any new symptoms. The doctor will ask you about your medication and whether you are having problems with it and if you need a new prescription. You will also have a medical examination.

The doctor will then advise you about any changes that need to be made to your medication and about any other investigations that you may need to have e.g. chest x-ray.

Each visit varies in length but could be more than two hours. The results of your blood tests will determine whether you may need any further treatment, for example, a transfusion. If this is the case it is usually organised for the next day (possibly at your local hospital).

Once you reach 100 days after the transplant (day +100) you will attend the General Transplant Clinic on Friday morning and you will remain under the care of the transplant consultants. These appointments, if all is well, will get further apart until you are only seen on a yearly basis.

If you are unwell between clinic appointments or have any concerns then you should contact the unit

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for advice. Again, arrangements can be made for you to see a doctor if we feel this is necessary. If you need to see a doctor you will be asked to come to the Day Unit on Level 3 or the Assessment Area on Level 4, both in the Bexley Wing .

Please see:

Looking after Yourself page 62

Life after Treatment page 76

Support page 92

Preparing for going home page 104

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SummaryIn this section we have given you an overview of the treatment process. This includes what happens when you first come in to meet the transplant Consultants and the types of treatment you might have before the bone marrow transplant. We’ve also covered what happens when you come into hospital, and how decisions are made about when you go home. Lastly we mentioned some of the things you’ll need to consider once you have gone home after the transplant, like coming back into clinic.

It’s likely that you came across information in this section that you wanted to know more about. The next section is a much more detailed section which should help to answer any questions you have about this treatment and help you to think more about what to expect.

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Why do I need a transplant?

This section includes • Blood and its function

• Function of the bone marrow

• What is a bone marrow transplant?

• What is involved in a bone marrow transplant?

• Types of transplant

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Blood and its functionIn order to understand about why you need a transplant it is useful to know something about the normal functioning of blood.

Blood contains cells (white cells, red cells and platelets) and liquid (plasma):

White cells - These form part of your immune system. White cells fight infection. Neutrophils are a type of white blood cell. Chemotherapy will destroy your white cells, especially the neutrophils.

Platelets - These cells help your blood to clot and prevent or reduce the risk of bleeding (e.g. nose bleeds, bleeding from the gut).

Red cells - These cells contain haemoglobin and this is responsible for carrying oxygen from the lungs to the rest of your body. Low haemoglobin levels will result in tiredness and lethargy.

Function of the bone marrowBone marrow is a soft, spongy material found inside bones. Its main function is to produce blood cells. Immature blood cells or ‘stem cells’, produced in the bone marrow continually divide to form more stem cells. These stem cells eventually mature to become different types of blood cells.

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Why have a Bone Marrow Transplant?Leukaemia and other blood disorders interfere with the growth of some stem cells and cause the cells to stop developing or to become faulty (or in some cases both). Eventually, the abnormal cells enter the bloodstream or organs in the body, such as the spleen, causing ill-health.

Transplantation may offer the best chance of cure. It aims to replace the body’s abnormal bone marrow cells with normal stem cells. The donor marrow provides a new immune system, which will actively seek out any remaining disease and attack it. This is known as the ‘graft versus disease’ effect and it can help to stop the disease coming back in the future. These normal stem cells will eventually provide immunity and allow normal cell production.

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What is Involved in a Bone Marrow Transplant? • Preparative therapy

• Transplant donor stem cells (Day zero)

• Cells travel to bone marrow and grow (engraftment)

The process involves giving ‘preparative therapy’. This prepares your body for the transplant by killing off the bone marrow and as many of the remaining diseased cells (if any) as possible. It also suppresses the immune system so the transplanted normal stem cells are more likely to be accepted. Preparative therapy was also called ‘conditioning therapy’ in the past and it may include chemotherapy drugs, radiotherapy and immunosuppressive drugs.

After the preparative therapy has been given, the donor marrow stem cells can be transplanted.

The process of transplantation does not involve any surgery, as some people think. The infusion of the donor marrow stem cells is relatively straight-forward procedure but it can be an emotional time and after all the build-up, can feel like an anti-climax! It is given intravenously (into the veins) as a drip, similar to the way in which a blood transfusion is given.

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The day on which the donor stem cell infusion takes place is referred to as ‘Day Zero’. Therefore the days before Day Zero are numbered as a ‘countdown’.

So if you start preparative therapy a week before Day Zero then we may say to you that you start therapy on ‘Day minus Seven’. We refer to the days after the stem cell infusion as ‘Day plus One, Day plus Two’ and so on.

The donor stem cells naturally find their way to the bone marrow cavity where they grow over the next 2 - 4 weeks, providing a new source of healthy blood cells. This process is called Engraftment. During this 2-4 week period, you will have very little immunity to infection and can be susceptible to a variety of problems. Please see section ‘Side-effects of treatment’, page 47 for more information.

This is unusual but sometimes your own immune system can reject the new donor stem cells or the new bone marrow can begin to fail. This is called ‘Graft rejection’. Sometimes this can be several weeks after you appear to be recovering from the transplant.

DAY 0

Donor Cell Infusion

DAY -7

Preparative Therapy Begins

-8 -7 -6 -5 -4 -3 -2 -1 0 1 2 3 4 5 6 7 8

One Week After Transplant

DAY 7

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There are measures to overcome this, such as the administration of more donor stem cells (‘donor lymphocyte infusion’) or possibly a second transplant. One factor that can affect the risk of graft rejection is the degree of ‘tissue type compatibility’ between the donor and the recipient (see the next paragraph ‘Types of transplant’ for further information). Generally speaking, the closer the match, the lower the risk of rejection.

Types of transplantThere are several different types of transplant donors and different preparative therapies. Your own circumstances and disease will determine which you have. If you need to have a transplant using a donor then it is vital to find a donor who is a good ‘tissue match’. Some of the commoner types of donors are described below.

Matched Related Donor (MRD)

There is about a 1 in 4 chance that a brother or sister will be a tissue match and can be a bone marrow stem cell donor.

Matched Unrelated Donor (MUD)

In this case the tissue matched donor is an unrelated healthy volunteer. Volunteers are found with the help of ‘Donor registries’, for instance, the Anthony Nolan Donor Panel. In this case the donation of stem cells is anonymous.

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Cord Blood Stem Cell Donor

Donor cells, taken from the umbilical cord at birth, are frozen and stored by the ‘cord blood stem cell banks’. The blood obtained is rich in stem cells and these stem cells are able to function in the same way as bone marrow stem cells from adult donors. The cord blood stem cells can be used as a donor for patients who need a bone marrow stem cell transplant. Adult patients generally need a combination of two matched cords.

Mismatched Stem Cell Donor

This is done using bone marrow that is not a complete match to your own, usually because no other donor is available. This procedure may be less successful due to the side-effects of treatment and complications that can develop. This does not mean however, that they do not offer a valuable form of treatment for some patients. The difference between a bone marrow transplant and a stem cell transplant is the type of cells given back. Some donors choose to give stem cells (taken from a cannula in their arm after growth injections) or bone marrow (bone marrow - containing stem cells taken in theatre). Sometimes it is possible to know which one is best for you. Your team can advice you on this however if your donor is unrelated they have the option to choose.

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What happens first?

This section includes • Pre-Transplant Investigations

• Preparative Therapy

• Radiotherapy

• Chemotherapy

• Other medications

• Central Line (Hickman Line)

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Pre-transplant investigationsThe following is a list of the investigations and tests that you may require leading up to your transplant.

Blood tests including:

• Blood count (looking at the different cells in your blood).

• Blood group.

• Blood biochemistry (looking at the chemical substances carried by the blood, for example, glucose).

• Evidence of infection with a variety of viruses or other microbes, for example, Hepatitis B, Hepatitis C, HIV, Syphilis and Toxoplasma.

The reason for requesting these tests is to allow us to treat any previously undiscovered health problems and make your transplant as safe as possible. They also tell us something about your current health, for example, if you are anaemic (low red blood cells). In some cases we may send you to another specialist for advice.

Some of the tests help us to decide which drugs and blood products you will receive whilst in the Bone Marrow Unit, for example, we will compare your blood group to the donor’s blood group. Some people may feel concerned about having a HIV test but it is important that we do this with everyone. This is because HIV may become more active during a transplant and treatment is necessary to control the infection.

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Other tests commonly required:

• Lung function tests - you will be asked to blow into a machine which measures your lung capacity and function.

• Chest X-ray.

• Echocardiogram - these are scans that test the function of your heart.

• Electrocardiography (ECG) - this is a trace of your heart rhythm.

It is important to have these tests before starting treatment. It helps us to plan treatment and to advise you about potential side-effects.

Preparative therapyThe type of preparative therapy that is given depends on your disease, previous treatment, current state of health and the type of transplant planned.

Below is an overview of the different preparation needed for each type of transplant: • Standard full intensity stem cell transplant using

a related donor. You will be given high-dose chemotherapy and immunosuppressant therapy. You may also be given high-dose radiotherapy.

• Standard full intensity stem cell transplant using an unrelated donor. You will be give chemotherapy and may also have high-dose radiotherapy. Immunosuppressant therapy is also given but the doses are higher than those used for a related donor transplant.

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• Reduced intensity stem cell transplant using a related or an unrelated donor. You will be given chemotherapy and may also have radiotherapy but in lower doses than those used for standard full intensity transplants. Immunosuppressant therapy is also given.

This type of transplant is recommended for:

• Some diseases (e.g. Hodgkin’s Lymphoma).

• People who are over the age of 40-50 years.

• People who are poorer general health (eg from previous treatment or from other illnesses).

Radiotherapy As mentioned before, some patients will be given radiotherapy as part of their preparative treatment. Radiotherapy is the use of targeted radiation to destroy the diseased bone marrow and to suppress the immune system. When you have a bone marrow transplant the treatment is given to the whole body rather than just one specific area (as in other cancers). This is called Total Body Radiation or TBI.

Radiotherapy treatment is painless, although there are some side-effects. See the side-effects section for information on the impact of radiotherapy on your body, page 48.

Radiotherapy treatment is carried out in the Radiotherapy Department on Level -2 in Bexley Wing. You will see a Clinical Oncologist about the radiotherapy treatment and will be able to discuss your questions with them.

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In order that your radiotherapy dose can be calculated specifically for you, you will be asked to attend the radiotherapy planning department in Bexley Wing for a ‘test dose’. This would normally happen 1 - 3 weeks before your radiotherapy. You will not feel anything during the test dose and you are able to drive after this procedure.

The radiotherapy may be given as a single dose or in multiple doses, up to twice a day. Radiotherapy is given on a machine called a Linear Accelerator and is shown above. Each dose takes about 20 to 30 minutes. It involves lying still on a hard bean bag bed. The radiotherapy staff (called Radiographers) will talk you through what will happen and support you during the treatment. Usually your treatment is given at about 8am and / or 5pm.

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ChemotherapyChemotherapy is the use of anti-cancer drugs to destroy cancer cells. It can do this by stopping cancer cells dividing and making copies of themselves. Chemotherapy is carried in the blood so it can reach cancer cells anywhere in the body. Healthy cells also take up the chemotherapy but they can repair the damage caused. Cancer cells cannot repair the damage and so they eventually die.

Below is a list of chemotherapy drugs commonly used for bone marrow transplants (side-effects are listed in the Side-Effects section, see page 49):

Cyclophosphamide - this is given intravenously (into the veins) over 1 or 2 days. The dose is calculated according to your weight. The Cyclophosphamide is given along with intravenous fluid, therefore we keep a strict record of your ‘fluid balance’. This is the amount of fluid you are given and the amount of urine you produce. You will be shown how to help the nurses with these measurements.

Busulfan - this is given in tablet or intravenous form.

Etoposide - this is given intravenously. Close monitoring of your heart rate is required although problems are very unusual. Small sensors will be attached to your chest during the infusion to monitor your heart.

Fludarabine - is given intravenously over 30 minutes.

Melphalan - given intravenously over 5 minutes. Fluid needs to be given for 24 hours afterwards.

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Other MedicationThis is a list of the main medications used and what they do. Just because they are mentioned does not mean you will get all of them - remember that everyone is different. You may also be given other medications that are not mentioned below.

Name of drug Purpose WhenIMMUNO-SUPPRESSANTSIncluding Ciclosporin, TacrolimusAlemtuzumab, (Campath), ALG/ATG, Tacrolimus and Mycophenolate mofetil (MMF)

Given to prevent your body rejecting the donor cells and to minimise “graft versus host disease” (GVHD). Please see GVHD section on page 56.Avoid grapefruit juice whilst on ciclosporin as it can increase the drug level.

Variable, see GVHD section on page 56

NORTHISTERONE Given to women to stop periods. This reduces the risk of anaemia

This is given in the early phase of the transplant until platelet count recovers

CO-TRIMOXAZOLE

(often known as Septrin, its trade name)

Given to prevent a chest infection called Pneumocystis pneumonia (PCP).

This is stopped just before your transplant and restarts at about 28-30 days after your stem cell infusion. Continues for 1 year after the transplant.

ACYCLOVIR Anti-viral medication given to stop the growth of the herpes family of viruses which may otherwise cause cold sores, chicken pox or shingles.

Taken at home for approximately 3-6 months after the transplant or until immunosuppression stops.

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Name of drug Purpose WhenALLOPURINOL Uric acid is a waste

product of the effect of chemotherapy on malignant cells. It is able to form a solid gritty substance called a crystal. Allopurinol is given at the same time as the preparative therapy to prevent a build up of uric acid crystals in the kidneys or joints.

Taken for around 10 days.

G-CSF A growth-injection sometimes used to help boost your white cell count after your transplant.

This may sometimes be used in the first month following your transplant until your white cells are above 1.0

MESNA Given to prevent ‘haemorrhagic cystitis’, which means bleeding within the bladder. It is given with a large volume of fluid.

This is given for 2-3 days whilst on cyclophosphamide.

ANTIBIOTICS Given to treat infection whilst you are in isolation.

As required

ANALGAESIA Given to relieve pain. Different strength tablets or intravenous injections are used according to your preferred choice - you may need stronger painkillers on a temporary basis at some stages of your treatment and these will be discussed with you, as required.

As required

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Name of Drug Purpose WhenANTIEMETICS These reduce nausea

and can help to prevent vomiting. Different strength tablets or intravenous injections are used according to your preferred choice - you may need stronger antiemetics on a temporary basis during preparative therapy.

As required

ITRACONOZOLE

(Other similar medications are Ambisome, Caspofungin, Fluconazole, Nystatin, Voriconazole and Posaconazole.)

Prevention of fungal infections e.g. Aspergillus.

Taken as a liquid or tablet form for about 3-6 months after the transplant or until immunosuppression stops.

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Central Line (Hickman Line)In order to make it easier to give you medication, to take blood samples and to give you blood products you will have a central line inserted in a large vein. This is often known as a Hickman line after the inventor. This is positioned under local anaesthetic. The fine, flexible, plastic tube goes under the skin of the upper chest and comes out a few inches below the collar bone.

It is useful to leave the line in place for 3-4 months after your transplant so that blood tests and any therapy needed after your transplant may be given with minimal discomfort to you. As it is a potential source of infection the nursing team will take extra care with looking after it whilst you are in hospital. There is advice further on about how to care for it once you go home and again you will not be expected to look after it if you do not feel confident doing so.

If you already have a ‘double lumen line’ and this is working well then this will remain. However, if you have a ‘single lumen line’ this needs to be removed and a double lumen line inserted instead. This is because a single lumen line is not able to carry the volume of fluids and drugs necessary during a transplant.

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Side-effects of treatment

This section includes • Side-effects of Radiotherapy

• Side-effects of Chemotherapy

• Effects of bone marrow suppression

• Infection

• Gastrointestinal side effects

• Graft verses host disease

• Hair loss

• Psychological impact

• Infertility

• Sexual function

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Side-effectsUnfortunately side-effects are inevitable due to the intensity of various treatments you will be given, but they vary from person to person. We have listed some of the symptoms it might be helpful to prepare for below. However this may be a little overwhelming to read all at once so you might want to read this in chunks or go to sections you are most interested in.

Side-effects of radiotherapyThe main symptoms that can go alongside Radiotherapy are sickness and diarrhoea. If this becomes a problem you will be given anti-sickness tablets and/or injections to try to keep these problems to a minimum.

The treatment may also cause a redness, itching and tingling of the skin immediately afterwards. This can then be followed by a darkening of the skin which occurs after 2-3 weeks. There is some advice regarding skin care in the section on ‘Looking after yourself’ on page 66 to help you to prepare for what might happen.

Up to 24 hours after Radiotherapy the salivary glands can become swollen which can lead to a dry mouth and thickening of the saliva. In order to help you manage any pain this might cause there is further information regarding mouth care in the section on ‘Looking after yourself’ on page 63.

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This is quite rare but there is a possibility that you may suffer from a period of sleepiness and possibly stomach disturbance such as nausea, vomiting or diarrhoea. This can occur from about 8-12 weeks after treatment and usually lasts no more than a week.

One possible longer-term side effect of radiotherapy is cataracts. This usually occurs within ten years after treatment and can be treated by surgery.

Side-effects of chemotherapyAs you may be aware chemotherapy can cause a range of side effects, and what is true for one individual may not be true for the next. This section includes the major side-effects that are commonly reported for the various chemotherapy drugs. All of these side effects are treatable and more information about this can be found in the above medications table and also in the in the section on ‘Looking after yourself’ on page 63.

The most common side effect of chemotherapy is nausea and vomiting. Cyclophosphamide is also known to cause diarrhoea in some cases.

Cyclophosphamide, Etoposide, and Busulfan can cause hair loss (alopecia) which is usually temporary but occasionally Busulfan can cause permanent hair loss. A sore mouth and gut can follow Cyclophosphamide and Etoposide.

Busulfan can, on rare occasions cause fitting or seizures but you will be given some medication called Phenytoin to reduce this risk.

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Lastly Cyclophosphamide can cause bleeding within the bladder (haemorrhagic cystitis) and blood in your urine. We try to prevent this from happening by giving you a drug called Mesna (see above).

Side-effects of bone marrow supressionIn the section ‘Why do I need a transplant?’ we explained that preparative therapy is used to suppress your bone marrow to get your body ready for the transplant. One of the side effects of this is a low platelet count which means you are at greater risk of bleeding.

It is important to report any signs of bruising or bleeding for example, as:

• Nose bleeds

• Bleeding from your gums

• Blood in your urine or stools

• Menstrual bleeding

• Skin rashes called petechiae (small blood spots)

You can take extra precautions such as being careful not to knock your legs, and wearing slippers to protect your feet. We may also give you regular platelet transfusions (if your levels drop below a certain level) to minimise these problems and we will do regular checks of your blood to ensure it is clotting normally.

Another common effect is anaemia which is entirely normal and might cause you to feel more tired.

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This is due to low haemoglobin and you may need the occasional blood transfusion during and after your transplant to help you with this.

InfectionUnfortunately you are susceptible to infection whilst your white blood cell count is low. It is common for patients to pick up bacterial and viral coughs and colds after a transplant. If you develop a temperature or signs of any infection, you will be given some antibiotics to help you fight it off.

It is most important that you report any signs of infection, such as cough, pain, soreness, swelling, heat or discharge. You should also report a runny nose as this can be the start of a serious lung infection and needs to be assessed quickly. When you are discharged home we advise that you check your temperature at least once a day initially or if you feel unwell. There are certain bacterial and viral infections which are potentially more serious and require more rigorous treatment. You should not hesitate to contact the medical staff if you have any concerns or new symptoms.

There are certain steps you can take to reduce your risk of infection. Please look at the ‘diet’ section on page 63.

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We have listed some of the important infections to look out for below.

Aspergillus (fungus)It may come as a surprise to you that fungus is potential source of infection. The spores are found in many areas and usually our immune systems protect us from becoming ill. However, people with weakened immune systems for example following preparative therapy are more susceptible to Aspergillus infections. You will be given medication to reduce the risk of becoming ill with this infection but there are things we know are helpful for you and your visitors to avoid.

Aspergillus is found in dust, compost, building materials, air conditioning, construction sites, pepper, some nuts and anything else that potentially involves disturbing mouldy material.

• Avoid herbs and spices unless cooked.

• Avoid activities with high risk exposure, such as gardening, compost making, handling potted plants or other household plants.

• Don’t smoke marijuana, as it contains Aspergillus.

• Wash your hands.

• Change your pillow regularly (every three months) as research shows pillows can harbour fungus.

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• Try not to smoke as it can further weaken your immune system.

Chicken poxThe chicken pox virus is called Herpes Zoster and it is very contagious. This explains why chicken pox is an infection that many people have as a child.

If you have had chicken pox in the past then you carry the Herpes Zoster virus in a ‘dormant’ or sleeping form. Normally your immune system keeps it in the dormant state but when the immune system is weakened as it is in some elderly people or when immunosuppressant therapy is being taken, then the virus reactivates.

In immunosuppressed patients contact with a person with chicken pox or reactivation of the Herpes Zoster virus can cause chicken pox or shingles. Occasionally it may cause more serious infections such as pneumonia.

If you do come into contact with any person who has chicken pox or shingles you should contact the unit for advice. Often this contact occurs when there is an outbreak of chicken pox among young children. You will probably have to come to hospital for a blood test to check the level of your immunity to this virus. If necessary we can treat this virus with medication. Please inform reception staff as you will need to be isolated when attending clinic to avoid the spead of infection to other patients.

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Cytomegalovirus (CMV)CMV is a virus that in otherwise healthy people may cause a mild infection. About 60% of the population are likely to have had a CMV infection in the past and will therefore have antibodies in their blood. We check your blood for evidence of CMV antibodies before transplant. CMV persists for life in those who have been infected and can be ‘reactivated’ when a the person is immunosuppressed. This reactivation can in some cases cause a serious illness, which needs to be treated with intravenous drugs.

We will monitor your blood weekly to check for any evidence of CMV reactivaton. If there is evidence of reactivation we will treat you before you develop symptoms with either ganciclovir or foscarnet. Treatment will continue until there is no virus present in your blood.

CMV reactivation may occur 3-6 weeks after your transplant even though you may still feel quite well. If this occurs you will be admitted to hospital (at Leeds not your local hospital) to receive treatment via your line. This can be upsetting as you may have only only recently gone home but it is very important that we treat you promptly. You may reactivate several times during the first six months post transplant until your immune system becomes stronger. If you live closer to the hospital and have access to transport this care can be done as an out patient in Ambulatory Care.

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CMV and pregnancy

There is a very small risk that the CMV can be passed to pregnant women (ie women who have not been exposed to CMV in the past) which could have negative effects on the health of your unborn child. Pregnant women should avoid direct contact with secretions (i.e saliava/urine) from CMV infected patients. After hospital visits or caring for anyone infected with CMV, hands should be washed thoroughly with soap and water and then dried. These precautions will help to prevent the mother and unborn child from being infected with CMV.

Gastrointestinal side-effectsAs explained above, chemotherapy, and to some degree radiotherapy, may cause nausea and vomiting. This generally only lasts a few days and there are effective anti-sickness drugs (‘antiemetics’) that we can give you. If you have had chemotherapy before and found that there are some that work well for you, please let us know as different people may respond best to different drugs. It is important to drink fluids to replenish the loss caused by vomiting but this can be difficult. If you cannot manage this, then we can give you the extra fluid that you need using your Hickman line.

Diarrhoea can occur for a number of reasons (for example mucositis, infection or graft versus host disease). It is important to maintain strict personal hygiene if you do develop diarrhoea, as your skin will be prone to breaks and infection.

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Preparative therapy not only destroys diseased cells but also some healthy cells. The healthy tissues are much more able to recover than diseased cells but this recovery may take several days. The healthy tissues most at risk of damage are in the gut. Therefore, you may be prone to developing a sore, ulcerated mouth, throat, gullet (oesophagus) and bowels. This can be particularly painful and can last a week or more after the bone marrow is infused, depending on the exact treatment you have had. Your nurse as well as the medical team will explain more about pain relief to help you with this when you are in hospital. It is important that you carry out some mouth care routines to help minimise these problems. See the ‘Looking after yourself’ section for more information on mouth care.

You may experience some loss of taste and appetite and a sore mouth and nausea or vomiting may prevent you from eating. This is entirely usual and your appetite will eventually return to normal. If weight loss is severe we will provide supplementary nutrition, go to the ‘Looking after yourself - diet’ section (page 63) for more information.

Graft Versus Host Disease (GVHD)Graft versus host disease is one of the most serious potential complications of allogeneic BMT. It occurs when a particular type of white blood cell - the ‘T’ cells - in the donated marrow (the graft) identify the recipient’s body (host) as being foreign and attack it. This may affect the skin, gut and/or liver. It is common

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to get a mild form of GVHD. You will be given drugs to help reduce or prevent GVHD and medication (usually steroids) to treat GVHD if it occurs.

GVHD can be ‘acute’ (usually causing problems within 100 days of your transplant) or ‘chronic’ (occurring more than 100 days after your transplant). If you have a ‘reduced intensity stem cell transplant’ then it is not unusual for acute GVHD to occur after Day 100.

Symptoms

Symptoms of acute GVHD include: Skin rashes, nausea, vomiting, stomach cramps, watery green diarrhoea or jaundice. Some of these symptoms are also found in infection (e.g. watery green diarrhoea) so we will carefully look for the cause of the symptoms before treating you for GVHD. Acute GVHD is common and ranges widely in its effects. You may experience very mild symptoms but in some cases symptoms can be severe and even life-threatening. You will be closely monitored to try to keep your symptoms to a minimum.

Symptoms of chronic GvHD are dry eyes and changes in the lining of the mouth causing a whitish lacy appearance. Symptoms of chronic GVHD overlap with acute GVHD but also might include changes in the lining of the mouth, pigmentation, tightening and hardening of the skin, weight loss, joint stiffness, fluid accumulation and shortness of breath.

Prevention and Treatment

Medication to suppress the immune system

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(immunosuppressants) are used to prevent or treat GVHD. Individual therapies will differ for individual patients.

Alemtuzumab - (Also called Campath-1H) OR Anti-thymocyte globulin (ATG) may be given during the preparative therapy before your stem cell infusion. These are antibodies and once given they stay in your body for several days or weeks. They reduce the number of donor cells that would tend to cause GVHD. They also help to prevent your immune system from rejecting the donor stem cells. Side-effects occurring during the infusion can include loin pain, headache, raised temperature and rigours (episodes of severe shivering and trembling). You will be given medication to reduce these side-effects - this is often called a ‘pre-med’.

Ciclosporin or tacrolimus - prevents and treats GVHD. It is given as an infusion initially and can cause headaches/sickness and skin flushing. You will continue to take ciclosporin as tablets for 3-6 months following your transplant. The level of ciclosporin in your blood is checked regularly and the dose may be altered to maintain the right levels.

Methotrexate - Is used as chemotherapy but it is also an immunosuppressant and helps prevent GVHD. It is given via your Hickman line in 3-4 doses during the first two weeks following your transplant.

Mycophenolate mofetil (MMF) - May be given as a twice daily infusion and later as tablets instead of Methotrexate to prevent and or to treat GVHD.

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Methylprednisolone/Prednisolone - Belong to a family of drugs called ‘steroids’. They suppress the immune system and reduce inflammation and are highly effective in the therapy of GVHD. The length of treatment you receive will depend on the severity of GVHD. Other steroids that may be used include Fluticasone, (‘Cutivate’) and Budesonide. Steroids may be used as infusions, tablets, creams or eye drops to treat GVHD. Side-effects include increased appetite, weight gain, high blood pressure, and cataracts. Unfortunately prolonged use can also lead to diabetes mellitus and osteoporosis and so the medical team will try to limit how much you have.

Basiliximab and Etanercept - These are antibodies that are given intravenously to treat severe GVHD.

Hair loss This occurs as a result of chemotherapy/radiotherapy as the treatment damages the hair follicles. In most cases it is not permanent but some people suffer permanent loss or damage to their hair after having Busulfan. Hair loss normally occurs within 1 to 2 weeks after the transplant and lasts several months. If you like, hats, caps or head scarves can be worn and we can also arrange for you to have a wig fitted.

Psychological impact Going through a Bone Marrow Transplant is challenging in many ways. This section is to look at the impact of the experience of the BMT on your emotions.

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As you may already remember from the other sections of this booklet, going through the BMT involves a period of isolation, which can be hard to cope with. Some people describe feeling cut off from the outside world and having an almost surreal existence in their room on the ward. Some people have also described feeling as if things are out of their control (and in reality this is often the case) and even the most private things become public knowledge to the medical team. You can also feel very unwell, which again can be difficult to cope with especially if you are on your own in unfamiliar surroundings.

There are many things you can do to help with this and there is support around if you feel you need it. Please see ‘Psychological Health’ in the ‘Looking After Yourself’ section on page 69 for further advice on how to cope.

Infertility Chemotherapy and radiotherapy can damage both the ovaries and the testes. Unfortunately the effects on fertility are likely to be permanent after you have had a transplant and you may want time to think about your options before you make a decision. You will have an opportunity to discuss this at the initial visit with the transplant consultant in privacy and there are options for patients who have not had or not completed their family.

For men, chemotherapy and radiotherapy treatment can stop the body producing sperm, although the

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hormone producing cells in the testes are spared. One possible safeguard is to store sperm produced before your treatment until needed.

For women periods may stop due to damage to the ovaries and hormone replacement therapy may be necessary following the transplant. Fertilised eggs can be preserved before cancer therapy. Unfortunately, as this is still a relatively new technique, the chances of pregnancy may be fairly low. Also, as every case is different there may be particular health reasons to caution against getting pregnant following a transplant. However, research in this area of treatment is ongoing and you should ask at your initial visit about any new developments.

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Looking after yourself

This section includes • Self-medication

• Diet

• Personal hygiene

• Mouth care

• Looking after your central line

• Psychological health

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Self-medication We encourage you to take responsibility for your own medication (‘self-medicating’) as soon as you feel able to. You are supervised taking your medicines initially and then, when you have been assessed and are confident to take them alone; we will give you a supply of tablets to keep in your room.

This process helps you to get used to all the tablets you will need to take when you go home and gives you more control. The scheme will be explained in more detail to you when the time arises. You won’t be asked to do anything you don’t feel ready for.

Diet It is important that you continue to drink as much as possible (2.5 to 3 litres per day), as you can easily become dehydrated. Occasionally patients have to be re-admitted for intravenous fluids.

A ‘clean’ diet is provided when you are in isolation and neutropenic - this helps to reduce the risk of you developing gut infections causing sickness and diarrhoea as well as infections in the blood. This clean diet will continue when you are discharged. Details of the clean diet are provided in a separate booklet which you will be given to refer to.

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Continuing to eat and drink regularly can aid your recovery and may reduce the severity of any graft versus host disease of the gut.

In order to assess your diet we aim to weigh you up to twice a day and will ask you to record your food intake.

A Dietitian will see you if you have any concerns or if you would like advice. If there is a concern about the extent of weight loss you may have the option of nasogastric feeding, which is a means of giving you a liquid food directly into your stomach. It is common to require this type of feeding and it will be encouraged by the nursing staff as it is of most benefit to you when you are unable to take food normally.

Nasogastric tubes are usually inserted whilst your mouth and throat are feeling relatively normal. This is because your throat may get sore quickly and it can then be too uncomfortable to pass the tube. Although you may lose your appetite during the transplant, it is important that you do not lose excessive weight (for example more than 10% of your pre-transplant weight).

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Personal hygiene The importance of preventing infection is essential and cannot be stressed enough. This is where you can help yourself by keeping good personal hygiene and trying to follow these basic guidelines.

Mouthcare

The soft skin of the mouth and throat is vulnerable to infection and bleeding problems, and can become very sore when your blood counts are low. Ideally you should arrange to see your dentist before admission so that any minor problems can be treated (please check with the transplant team/ medical team before doing so). You will be shown how to perform mouth care while you are in hospital and you should do this at least four times a day, where possible. You are advised to use a SOFT toothbrush (e.g. a child’s toothbrush) when brushing your teeth. When your platelet count drops below 20 you may notice some bleeding. If bleeding is a persistent problem then mouth sponges can be used - the staff will show you how to use them.

It is important to keep your mouth moist, rinsing every hour or so is recommended, especially if you cannot clean using the normal method. An easy and effective anti-septic mouth wash or gargle can be made by adding a quarter of a teaspoonful of ordinary table salt dissolved into a litre (or about two pints) of water. You may also be given commercially prepared anti-septic mouthwashes such as Corsodyl.

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Please ask for assistance if you have any problems managing your mouth care.

We will, of course, monitor the situation but it is important you tell us of any problems; for example, mouth ulcers. We can then advise you and try to offer the appropriate form of pain relief if necessary.

Skincare

It is important to follow the following advice regarding skin care after radiotherapy treatment as your skin may be prone to redness and itching/tingling.

To minimise these problems:

• Use only non-perfumed mild soap/shampoo (such as simple or Johnson and Johnson) and avoid other products, perfumes, after-shave, make-up and other cosmetics.

• Keep your skin clean and dry and apply non- perfumed moisturising cream daily to maintain an intact barrier against infection. Cream will be provided by the hospital staff.

• Keep your hands clean - wash with soap and water before and after eating and particularly after using the toilet.

• Protect skin from sunlight. In the long term after your transplant you should use sun block cream on sun exposed areas.

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• Use only electric razors (when your platelet count is above 50 you can use a normal razor).

• Avoid wearing contact lenses.

• Change into clean clothes daily.

Many types of bacteria normally live on the skin, which, while your white count is low can cause different types of infections.

The staff will check the condition of your skin every day but it is important for you to report any cuts, bruises or bleeding that you notice.

Your nails should be kept short and clean to prevent infection and scratches. Do not use sharp scissors for cutting your nails – nail clippers are preferred. Please bring them in from home if needed.

Although your hair may eventually fall out you should wash it every day until this happens. If your hair is long it may be better to have it cut short before you come in. Hats or head-scarves can be worn (the Robert Ogden Centre based at St James’s can help with this, please ask the team caring for you). Wigs are not advised during the transplant admission in order to reduce the risk of infection. See page 95.

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Looking after your Central Line This line is a major potential source of infection and should be cared for using a sterile technique. Please make sure the line is always well secured and try to keep it as dry as possible when bathing.

It is still necessary to flush your lines weekly as an out patient. This is done in the clinic although if you are attending less frequently please ensure you are booked in to have your line flushed on a weekly basis.

Alternatively a friend or relative can be taught how to do this for you if you prefer.

Your line generally stays in place for 3-6 months so that we can continue to monitor your blood in clinic. It may be removed before this time if you have any problems with infection or blockage of the line.

You should report any of the following problems:

• Redness, pain or swelling around the exit site.

• Shivers/shaking (rigors) when or just after the line is being flushed.

• Any blockage evident on flushing.

• Any deterioration in the condition of the line, e.g. loose clamp, broken ends or splits in the line.

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Psychological health Listed below are a few things that might help you through the experience of BMT. They are based on our experience of working with people who go through a BMT.

Keeping up with the outside world

• It can be helpful to keep up with the events in the outside world to keep a connection and a link to life outside your room.

• This may involve a link to your world - a mobile phone, letters from friends and family.

• Think about your mobile phone package and whether you might want to arrange extra text messages to be available when you’re going through your BMT. Ask friends and family to ring you regularly and keep you up to date with all the news and gossip from home and work.

• The TV can provide a link to the events going on in the wider world. But you may also want to ask one of the ward staff to get you a daily paper or you may want to listen to the radio.

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• Some people have brought in their own laptop with a mobile broadband link so that they can keep up with e-mails, general internet browsing and on-line shopping! Unfortunately the signal can be poor in some of the rooms.

• All these suggestions will help you to keep up with events going on outside of your room but will also provide a distraction from how you are feeling.

• It can be helpful to find lots of different ways to distract yourself from your daily life on the ward - think about what interests you. Perhaps a magazine (ask friends or family to bring these in with them), books, CDs, knitting or sewing. Try to choose things that you can easily pick and put down as you may not have the energy to spend long periods of time doing these activities.

Managing your expectations of yourself

• It can be hard to know what to expect of yourself when going through a BMT.

• Sometimes people expect a lot from themselves when they are actually very unwell and their body just doesn’t have the reserves to do all that the mind wants it to do.

• Keep in mind that you are operating under ‘exceptional circumstances’ so different rules apply about what you can do in a day.

• It can be helpful to break things down into small manageable chunks - e.g. reading a newspaper an article at a time or consider getting washed and

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dressed in stages.

• Each day may feel different so keep your plans flexible. If you don’t feel up to doing what you had planned, forgive yourself and plan something different.

• Reassess each day (or maybe morning and afternoon) what you feel able to do.

• But… try to do something, however small it may seem, each day. Keeping some sort of goal in the day can help your mood and your self-esteem. It can also give you a sense of achievement if you complete your goal for the day!

Having a say

• It can feel as if you have handed over your whole life to the doctors and nurses on the ward. In some senses this may be an accurate reflection of your situation.

• However, it can be helpful to keep control of some aspects of your life on the ward.

• Think about what’s important to you and ask the nurses if you can incorporate these into your life on the ward. It’s important to try to keep life as close to normal as it can be to help you to adapt.

For example

• You may want to be called a particular name - e.g. Bob rather than Robert.

• You may like someone to buy you a particular daily paper if they have time when they go for a break.

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• You may ask for a family member to be there when you are seen by the doctors.

• You may want to have your blood count levels recorded somewhere so you can see what is happening.

• You may want someone to write the day and date on your whiteboard each day.

• You may want to keep a book and pen by your bed so that you can write down questions for the doctors. You might also want the doctors to write their responses in this book so that you remember what they said.

• You may want to establish a routine to the day e.g. having the blinds open from a certain time in the morning etc.

• Work with the ward team to find a comfortable balance between getting the help you need and keeping control of some things.

• Keep your plans flexible so that they can accommodate any changes that need to happen.

Managing family and friends

• Going through the BMT experience can be difficult for everyone involved in your life.

• People may react in many different ways and that can be difficult for you to cope with.

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• Your focus may have to be on getting through the BMT and so it might leave little energy for family and friends.

• You may want to think about who you want to visit you and when.

• Perhaps draw up some ideas before the BMT of who you’d like to visit initially and when other people can visit.

• Remember they can be an important link to the outside world but it can sometimes feel too much to have too many visitors.

• Give yourself permission to only see visitors for short periods if you feel too tired for longer visits.

• If you have young children who cannot visit consider making diaries for one another and swop them periodically.

Managing uncertainty

• The process of going through a BMT can leave you at times feeling very uncertain about how things will progress.

• It can be helpful not to look too far into the future and to focus on a day at a time to manage this uncertainty. No-one can see into the future and tell you what will happen - but they can tell you how you are that day.

• It is normal to have days when you feel less hopeful about the future. Sometimes these thoughts are

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based on how you feel rather than the facts of the situation. The danger comes when your fears or thoughts turn into a definite thought about what is happening. A fear has changed from possibility to a certainty, from ‘might’ to ‘will’.

• Focus on the word ‘might’. If you can accept that word rather than the word ‘will’, then there is an opposite thought to contemplate. For every ‘might’ there is a ‘might not’.

When might I need extra help?

• We’ve said many times in this section that a lot of the thoughts and feelings that you may experience are very normal for someone going through a BMT.

• However, that doesn’t mean that you have to put up with feeling low in mood or very worried.

• Try to find things that help manage your feelings- this might include talking to friends or family.

• Sometimes feelings may become more difficult to deal with on your own and this might be when you want to ask for some extra help. You may want to talk to someone separate to your family and this is an option. You may get on with one of the ward nurses particularly well and choose to speak to them about how you feel.

• There are also others sources of support listed in this booklet - e.g. Leeds Cancer Support or the Social Work Team.

• Alternatively, there is also the Clinical Psycho-

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Oncology Team which can see people going through a BMT. The team is made up of Clinical Psychologists and Liaison Psychiatrists. They can meet with you on the ward or in a clinic to discuss how you are feeling about your situation. They will want to listen to your story from your point of view and think with you about what kind of help you might like. Sometimes this can be specific strategies to help you get through a difficult situation and sometimes this might be a space to talk about your feelings. The person who you meet from the team can talk to you more about the options.

• If you feel that you (or a member of your family) would benefit from this kind of help, please mention it to one of the nurses or doctors involved in your care. They will then contact us with a brief summary of the difficulties you are experiencing. A member of the team will then contact you to arrange a time to meet.

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Life after treatment

This section includes • Socialising after transplant • Fatigue • Emotional reaction to the end of treatment • Exercising • Driving • Diet • Eating out • Haircare & Skincare • Looking after your mouth • Sex Life • Hormone Replacement Therapy (HRT) • Pets • Returning to work • Holidays • Vaccinations

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Although getting home can be a time for celebration and relief that the intensive part of the treatment is over with, it can often take several months for you to feel emotionally and physically recovered from the treatment and time in hospital. You will have physical changes to cope with as well as alterations in your lifestyle.

We have tried to provide some general advice about the post transplant recovery period - it should be stressed however that these guidelines are very general. Everyone is different and some people will recover at a quicker rate than others. Take things at your own pace and don’t be afraid to contact us if you have any concerns about how you are doing. We will provide you with further long term information around 4-6 months after your transplant.

Socialising after transplant For the first few months after your transplant, whilst you are taking immunosuppressants, you should avoid crowded places or confined spaces, such as supermarkets, pubs, cinemas and restaurants as you

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are more likely to pick up infections. This doesn’t mean you should not see your friends or go out at all - check that visitors are fit and well before they visit and keep numbers to a minimum as you may still feel very tired at times. Where possible, limit the amount of contact you have with babies and children.

Take particular care around children and adults who have been vaccinated within the previous few weeks as they may shed the vaccine in body secretions. This is only a problem with live vaccinations eg MMR.

You should also take care to limit your contact with children who have not had chicken pox (see the section on chicken pox on Page 53).

If you are going out of the house then try to anticipate when will be a quiet time of the day to make your journey and arrive at your destination. Once you have completed your course of immunosuppressants you will not need to take such precautions.

Fatigue This can be surprisingly severe when you first go home. You may find that performing the most simple of tasks can be quite exhausting, for instance taking a bath, climbing a few stairs or doing simple household chores. There are likely to be several factors contributing towards this tiredness.

Perhaps it’s the medication you are taking and that your body is not used to activity. Although the

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feeling of extreme tiredness will improve in time, there are ways in which you can help yourself to cope with or minimise the symptoms.

• Plan your day to allow adequate time for resting.

• Accept any offers of help from family, friends, social workers and neighbours - most people are more than willing to offer support.

• Spread household tasks out over the week - do a little each day if necessary and where possible sit down to do jobs, e.g. ironing.

• Get help with the heavier jobs such as shopping or, if possible, get it delivered.

• It can be particularly difficult to rest if you have young children to care for. Things will improve with time, but in the meantime accept any available help to make things a little easier. It is also worth explaining to your children why you are so tired and allowing them to help with small household chores - you might be surprised how well they respond.

• Childcare facilities may be available to you - speak to your social worker to see what options are open to you.

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Emotional reaction to the end of treatment You may find that treatment has affected how you feel emotionally and it is important to allow yourself time to get used to what has happened and the changes your body has been through. It is easy to put too much pressure on yourself to be back to ‘normal’ but this is not always helpful and sometimes can become a bigger problem in itself. Don’t forget you are in exceptional circumstances and if this had happened to someone else you wouldn’t expect them to recover so quickly so why expect this of yourself?

However, it is important to hold onto the thought that things will improve in time. If you are finding it difficult to remain hopeful then it might be helpful to find ways of charting your progress to remind yourself how far you have come. Try to make sure you include enjoyable activities in every day rather than just chores. Having several things to look forward to can make life feel more normal and help you get through the things you find more difficult.

Occasionally people find it too difficult to cope with the emotional impact on their own and this is understandable. Perhaps this is the greatest challenge you have faced in your life and as such it is OK to need a little extra support to help you to get through it. Sometimes it can be helpful to talk to someone in the medical or nursing team looking after you about how you feel. They may suggest referring you to the Psycho-Oncology team who specialise in helping people to cope with the impact cancer/illness has on people’s lives.

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Exercising Taking small, regular amounts of exercise will help you regain your strength and energy. You may only be able to climb the stairs initially without tiring but you should aim to steadily increase your level of activity.

Do not try to resume your normal exercise routine too soon, as you may be at risk of injury or exhaustion. Set small, regular, achievable goals like going for a short walk every day to the local shop to get a newspaper. When you do things more often they can become a helpful habit and will build up your stamina more quickly. It is easy to come up with excuses to avoid doing more activity less often and it may not give you a sense of achievement if you find the activity difficult.

Remember enjoyment is the most important part.

It is not advised to go swimming whilst you have a Hickman line or are on immunosupressants.

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Driving You should avoid driving until your platelet count is at least above 100 (you are at higher risk of bleeding at this time) and you are no longer at risk of radiation sickness. These factors can make you very sleepy and therefore unsafe to drive. If you have not had radiotherapy then you should be sensible about when you start to drive again.

It is advisable to wait at least two months (for your blood count to recover) and to ensure that you are otherwise well. Tiredness is a very common symptom after a transplant and even if you are able to drive you should think about bringing somebody with you to the clinic to drive you home should you feel too tired.

Diet

After you are allowed out of isolation your clean diet should continue and you should follow the advice provided in the clean diet booklet until you are off Ciclosporin and steroids.

You may find it is some time before your taste and appetite return to normal. Try and eat small amounts regularly and include nutritious snacks and plenty of fluids. As a general rule you should drink around 2.5 to 3 Litres a day. You should continue to drink bottled sparkling water (the process of carbonating water limits bacteria growth) or tap water (if safe to do so).

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Eating out

It is advisable to avoid busy restaurants or pubs in the first 3-6 months but is fine to eat out, provided you go somewhere quiet and to a restaurant where you are confident about the standards of hygiene. We do not recommend take out food although the occasional ‘fast food’ such as fish and chips can be all right, provided the food is fresh and well cooked. However, avoid salad e.g. burger fillings.

Definitely avoid ‘take aways’ such as curries, kebabs and chicken meals where the meals are being reheated rather than freshly cooked as these carry the highest risk of infection.

The occasional alcoholic drink is permitted, although you should check with the staff in clinic that the medication you are taking does not affect this decision and that your liver is healthy.

Haircare & skincare You may find that it is some time before your skin recovers from the effects of the treatment. It may be very sensitive and dry (particularly if you have had some GvHD); there may also be some discolouration.

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Therefore it is important to follow these simple guidelines:

• Use only mild, non-perfumed soaps and beauty products.

• Avoid excessive sunlight. Use a sun block if you are going out in the sun.

• Continue to use moisturising cream daily.

It may be 2-3 months before your hair begins to grow back. Don’t be surprised if it is a different texture and perhaps even a different colour compared to before the transplant. While you are taking ciclosporin, you may also notice that you develop extra body hair, especially on your limbs, face and ears. This will return to normal once you stop taking the drug.

It is advisable to protect your head from both the cold and the sun until your hair grows back. Ask if you would like a wig as we can organise this via the Robert Ogden centre while you are in hospital.

Looking after your mouth We recommend that you continue with a thorough regime for cleaning your teeth and mouth once you go home. If your platelet count is greater than 20 then you should brush your teeth, using a soft toothbrush and a gentle circular action on the teeth and gums. You should also continue to use a mouthwash and this can be a mild saline mouthwash (a quarter of a teaspoon full of table salt in two pints or 1 litre of water) or a commercially available

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mouthwash available ‘over the counter’. Eating pineapple may reduce any build up of ‘fur’ on your tongue.

Should you require any dental treatment, it is advisable to check with the doctor or nurse at clinic whether this is appropriate.

Sex life There is no physical reason why you cannot resume a normal sex life, provided your partner has no infection. You may find, however, that it takes some time for your sex drive to return - this is common and can be affected by anxiety, tiredness or sometimes the medication you are taking. As you begin to feel better and your energy levels increase this should start to return to normal. Women often experience vaginal dryness and the use of a lubricating jelly, such as KY jelly, and hormone replacement therapy may ease this.

Men can experience difficulty with getting or maintaining an erection and have problems with sensation.

For some people this can be a sensitive subject but please feel free to discuss any concerns you have in relation to your sexual health and relationships. It can be surprisingly easy to get things back on track with some professional advice.

Sexual counselling is available to you via hospital services or your GP.

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The transplant is difficult for both yourself and your partner and sometimes sex and your relationship can take a back seat. Sometimes the focus has been on your illness for so long that other issues are put back for later. However, for many people sex is an important component of a good quality of life and therefore we are happy to try to help address any concerns you might have about this.

Despite the likelihood of infertility it is advisable to use contraception if you wish to avoid an unwanted pregnancy. If you do not have a regular partner then the use of a condom helps to prevent the risk of infection.

We also recommend the use of condoms to minimise the potential risk of passing small amounts of drugs to your partner from body fluids, e.g. use condoms whilst still on Ciclosporin.

Hormone Replacement Therapy (HRT)Most women who have had a transplant will have changes to their hormone levels resulting in an early menopause. The hormone changes can lead to a number of problems some years later, and there is a particular risk of osteoporosis (thinning of the bones).

Low testosterone levels may cause problems for men and levels are routinely measured at one year after transplant and then if symptoms warrent. Again, it may be helpful to consider hormone replacement therapy.

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We will offer you the opportunity to be referred to specialist clinics in endocrinology, gynaecology and genitourinary medicine if needed.

These services are very helpful in assessing your risk of complications relating to hormone deficiencies, difficulties in sexual function and fertility.

Pets Some animals carry diseases which can be harmful to you whilst your immunity is low (reptiles and birds, for instance) but most domestic pets are safe to keep provided you maintain strict hygiene precautions. Ideally another person should care for your pets (e.g. changing the pet’s litter) so as to minimise your risk of serious infection. You should always wash your hands after handling your pet and avoid their excreta (or wear gloves).

Cats usually pose the greatest problems due to their more independent nature but all pets pose a potential hazard. Please speak to the medical staff about this at your initial visit or before you go home.

Returning to work It will be several months before you are able to return to work, but this will obviously depend upon the speed of your recovery and the type of job you have.

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Most people feel well enough from about six months post transplant. It may be an idea to phase back into work or go part time at first as you may still get tired easily. Discuss this with your employer as they may be understanding. Let us know if we can help.

The Macmillan website has useful information

www.macmillan.org.uk

The Disability Employment Adviser can be of use at your local job centre.

HolidaysYou will be attending clinic regularly in the early months and you are strongly advised not to travel abroad. Travelling long distances often means exposure to crowds of people in confined spaces. Travelling by air may increase your risk of infections due to the confined space and recirculation of air. In addition you may not be entitled to free medical care in the countries that you visit.

Taking a short break in this country should pose no problem, providing you are generally well. Once your white count has improved and you are off all immunosuppressants then it may be feasible for you to travel further afield.

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If this is something you are considering, please discuss this with the medical staff when you attend clinic and they will provide you with a covering letter if necessary. We do not advise travelling abroad for one year after your transplant.

Vaccinations After your transplant you will need to be vaccinated against common infections - and the vaccinations will be similar to those given to children in the UK. These vaccinations will be given to you by your practise nurse at your GP practise.

Vaccination against influenza is usually given in the Autumn as long as it is at least three months since your transplant. In general vaccines will be started at six months to one year depending on your health and amount of GvHD (if you are on steroids this may stop the vaccine working).

Vaccines generally use a dead form of the infectious organism but some are called live vaccines because they use a weakened form of the infectious organism.

This is not a problem for a healthy immune system but following transplant it may take some years for your immune system to respond normally to a live vaccine.

Therefore we advise against the use of live vaccines in the first two years after a transplant. Polio vaccines are available as a live vaccine or as a vaccine made using the dead organism.

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We recommend that the live polio vaccine is not used.

In addition we advise against the use of live vaccinations at any stage if you are on immunosuppressants.

Examples of live vaccines are MMR and BCG (against tuberculosis).

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Support

This section includes • Haematology Social Work Service for Adults

• Leeds Cancer Support and Robert Ogden Centre

• Chaplaincy service

• Psycho-Oncology service

• Frequently asked questions for relatives

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Haematology Social Work Service for adults There is a social worker available to talk to you and your family about any worries or concerns you may have arising from your stay in hospital. He or she can also be involved before you come in and remain involved after you have been discharged if this is helpful. Being ill can affect your finances and the social worker can advise on this.

For example there are benefits for illness and or disability which are not means tested which you might be eligible for. You can be advised and helped with applying for any benefits you may be entitled to and this can ease the stress of coping with the benefits paperwork.

When you are in hospital, it is comforting to have loved ones visit you. If you live outside Leeds this can be an expensive time. Financial help may be given to cover travelling fees in many cases. Help can also be given for you to travel to outpatient appointments.

Charitable funds may also be used to help with extra expenses incurred by being ill or in hospital. These can include things like - increased heating bills, bill or rent arrears and items such as beds and washing machines (if you do not have access to one already).

If there is anything you can think of which would make your life easier at this time just ask. If you wish to see the Social Worker please ask your nurse or doctor who will provide you with the relevant numbers.

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Leeds Cancer SupportThe Leeds Cancer Support Service at St James’s Institute of Oncology in Bexley Wing is here to help you and your family. We aim to offer high quality information, advice and support, to patients, families and friends.

We have a large selection of information leaflets, Macmillan Cancer Support booklets and fact-sheets. We also have visual and audio aids and assisted internet access for patients and visitors. Please come and browse or just drop in for a chat.

The Robert Ogden Macmillan Centre

The Robert Ogden Centre provides an environment where patients and their families can drop in for a drink, take some time out, or just a chat. The centre also offers a variety of support services including counselling, support groups and complementary therapies. These therapies include Reiki, relaxation and visualisation, hand and foot massage and many others.

More details are also available from the Information lounges, contact numbers overleaf.

Leeds CancerSupport

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Contact Leeds Cancer Support:

Level -2 Radiotherapy Department.

Tel: 0113 206 7603 open 8.30am - 4.30pm

Level 1 Westmoreland Outpatients Unit.

Tel: 0113 206 8816 open 10am - 4.pm

The Robert Ogden Macmillan Centre

Tel: 0113 206 6499 open 10am - 4pm

Leeds Cancer Support services can be contacted by email on:

leedsth-tr.Cancersupport@nhs.net

Chaplaincy Service There is a quiet room within the Faith Centre on Level 1 of the Bexley wing where you and your relatives may find it helpful to sit peacefully and reflect or pray.

Chaplains from many different faiths are available to support you. But you don’t need to have a formal faith in order to find support in a chaplain.

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Chaplains are here to provide a listening ear. They are someone apart from ward staff and your family to talk to and are able to hear your concerns in confidence.

If you just want someone to call now and then, and keep you in mind, don’t hesitate to contact the department or ask one of the nurses looking after you to do so on your behalf. Apart from the Chaplains we also have a team of trained volunteers, and they would be able to visit if you wished. We are keen to do all we can to help you through your experience.

Psycho-Oncology Service The experience of going through a BMT can bring many different feelings, both for you and those close to you. Sometimes they come together in a way that can feel overwhelming. This may cause you to worry about how you will manage and this is where a member of the Clinical Psycho-Oncology Team may help.

The team has Clinical Psychologists and Liaison Psychiatrists who can meet you and/or your relatives on the ward. It can be useful sometimes to talk to someone who is not involved with your care. They will ask you about the difficulties as you see them to get your point of view. Sometimes they may discuss coping strategies to help deal with what is happening to you. They can also recommend services outside the hospital that may be of benefit to you and your family.

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What it’s really like No-one knows what it’s like going through a transplant apart from the people who have been there.

It can sometimes be really helpful to get an idea of what it’s like from hearing from people who have been through the experience of a BMT themselves.

There are some internet sites that contain BMT stories (blogs) or forums for discussing experiences with people in similar situations:

www.bmtinfonet.org

www.macmillan.org.uk

www.baldyblog.freshblogs.co.uk

www.allinex.org

Please let us know if you have found any other websites useful so we can tell other people about them.

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Frequently asked questions for relatives and friends The aim of this section is to address some of the questions that your friends and relatives may have and to give guidance on how they can provide support whilst you are in the unit.

We realise it can be quite bewildering and even frightening for visitors when they first arrive at the unit - try not to worry as we will inform you of any restrictions and procedures that are important for you to know.

Common questions and answers

What kind of support can I offer?

This will obviously vary from person to person. Some will want and need very little support, whilst others will rely on a number of people for both emotional and physical support.

Offers of practical help are often appreciated, for instance, providing transport when required, helping with housework, washing, shopping, looking after the kids or pets at home and so on.

It is important to appreciate that, at times, your friend or relative may feel quite tired or low and may not have the energy for visitors or even phone calls.

This is quite normal and usually temporary. People are often reassured by the fact that their relatives and friends are thinking of them. You can help them by offering to manage their visitors for them so they

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don’t feel under pressure to see people when they are not feeling up to it. The amount of emotional support you can offer will also vary with how the person feels. Sometimes they may want to talk about how they are feeling, whereas at other times they just want to focus on the practicalities of getting through the treatment.

Try to be guided by them. Sometimes just listening to their concerns without feeling the need to offer advice can make a big difference to people.

What sorts of things can I bring in for the patient?

Magazines/Cards and letters are a good idea as they keep the patient informed about the world outside.

New soft toys are allowed but old toys if unable to wash should be left at home, but other gifts, such as games are okay. If bringing in a newspaper please try to select from the middle of the pile.

What happens if I have an infection?

If you have any sort of infection you should not come to the ward. It is common for visitors to develop minor coughs and colds and in this case, you should wait until the symptoms have resolved before resuming visiting. If you are unsure, seek advice from the staff. It can be particularly upsetting for you if you are the main carer but you will need to be fit for when your loved one comes home so it’s better for you to be well.

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When is the best time to phone?

You can ring anytime and speak to the staff who will inform you of the patient’s progress. We cannot, however, give out confidential information over the telephone.

Am I allowed to hug or kiss the patient?

Yes - it is fine to offer a hug or kiss to patients, providing you have no infections and that you follow the strict hand washing procedures.

What do I need to wear on the Unit?

It is advisable to wear light, cotton comfortable clothing when visiting. Relatives going in to the patient’s rooms are asked to wash their hands and wear plastic aprons. You can bring a pair of slippers to keep for wearing in the room - this is for your comfort only and not essential.

Can I stay overnight?

Staying overnight is usually only for very unwell patients. See the information about the patient hotel on page nine.

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Question and comment pages Use these pages to write any questions you think of leading up to your transplant - don’t be afraid to ask, even if it seems quite minor.

You may find it useful to bring this booklet to the clinic or the ward so you can then discuss your questions with the medical or nursing staff.

We hope that you have found this book helpful in preparing you for your transplant.

If you have any comments or suggestions to make this better please do not hesitate to contact:

Suzanne Liebersbach CNS,

Dr Maria Gilleece or,

Dr Gordon Cook

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Preparing for going home

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Preparing for going home after your transplantNow that you have had your transplant and you are almost ready to go home from the ward we have some helpful suggestions for you.

Remember the ward is available 24/7 to answer any queries about your transplant, no matter what time of day or how silly you think the question is!

Take another look at the Life after treatment section on page 76 of the main booklet given to you before your admission. Do please share this with family and close friends so that they can understand how best to help you make a full recovery.

If you feel unwell after going homeIf you are experiencing problems or are unsure about anything please phone the ward. Although it is best to phone the ward in the morning time you should NOT delay if you have new symptoms such as:

• a rash that is new or getting worse;

• diarrhoea, nausea or vomiting;

• temperature greater than 38oC;

• generally feeling unwell.

• If you have a temperature of 37.5oC or over then check it again in one hour.

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If the first temperature OR the repeat temperature is 38oC or more then you should phone Ward 89 immediately on:

0113 206 9189 or 0113 206 9289

It is very important that you contact the ward staff so that an urgent medical assessment can be arranged. You may take Paracetamol to help reduce your temperature (if you usually take this drug). Please make sure you read the enclosed information about side-effects in the paracetamol package.

Your clinic visits and medicationMake a list of all the treatment and medication that you take including tablets, liquids, inhalers and creams. Ask the doctors, nurses or pharmacists on the ward how each of these is meant to help you. Often there are information leaflets that come with the treatment and these will also explain the benefits and side-effects of your therapy.

Some patients keep a list of their treatment and medication on a piece of paper stored in a wallet or purse, while other patients prefer to keep a list on a mobile phone. When changes are made to your treatment or medication please update your list. The doctor seeing you in the clinic will be happy to help you.

Your list of treatments may include medicines that were originally prescribed by your GP e.g. blood

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pressure tablets. As far as possible you should continue to get these medicines from your GP but you should always keep the clinic doctor up to date with what you are taking. In the long term you will get most or all of your medication from your GP. In the early stages after a transplant we use drugs that are not always available outside of the hospital.

At each clinic visit the doctor will ask you whether you need a prescription. Please check the amount of medication you have the night before coming to the clinic, to work out what you may need. This will help to avoid the problem of running out of tablets in between hospital visits.

Tablet (Dossett) boxes are available from Boots. They can be useful for you or your relatives as an aid in remembering when to take tablets. It also may help if they are sometimes prepared for you, especially if your relatives work.

Most of you will be taking ciclosporin or tacrolimus and these drugs help to protect you from graft versus host complications. It is important that we measure the levels of ciclosporin/tacrolimus in your blood at each clinic visit. We use these results to decide on your dose for the following week.

Do not take ciclosporin / tacrolimus on the morning of your clinic visit. This means the morning dose is completely missed. However do take the evening dose as usual.

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If you forget and take your morning dose, then please tell us as the blood result will be inaccurate. The blood test will need repeating at your earliest convenience.

Clinic waiting times

Waiting times in the clinic can sometimes be longer than planned, especially if other patients are ill and need extra time. It may help if you use the time to:

• Write down any questions you want to put to the team.

• Check your list of treatments and whether you need a new prescription.

• Finish that novel you’ve been reading!

• Bring a snack or drink with you.

Symptoms to discuss with your medical team

Pay particular attention to symptoms relating to your appetite, signs of infection, diet, weight, skin, mouth, eyes and bowels. Some symptoms may become a chronic problem and treatment may take several weeks to become completely effective. Please keep a diary of your symptoms e.g. how many loose motions per day or signs of infection. This will help the medical team assess how severe your symptoms are and how they are responding to therapy and whether you need a new therapy.

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General advice • Unless you are advised to restrict your fluids then

you should aim to drink 2-3 litres of fluid a day (150 mls = 1 average sized tea-cup, 1000 mls = 1 litre , 20 cups would be equal to about 3 litres). It can help if you drink a small amount every hour, to help you achieve this target.

• The information in the nutrition booklet can help you with advice on increasing your calorie intake, if you are struggling to eat.

• Try to take a short walk every day – even if is only round your garden or to the bottom of your road.

• Avoid crowded places such as the pub or supermarket.

• You do not have to change your bedding daily at home. Go back to your usual routine. (Ideally every one to two weeks).

• Avoid people with infections, particularly children.

• Follow the “clean diet” until our team advise you otherwise. Usually you can stop the diet when your immunosuppressants ( steroids and cyclosporin) have been stopped. However your immune system may take longer to recover therefore the clean diet may continue for a while afterwards. Please discuss this with your clinic doctor.

• Avoid alcohol – many drugs that you take may interact with alcohol.

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Travelling abroad

Please do not travel abroad without discussing this with the clinic doctor. In general we advise against foreign travel during the first year after transplant and while you are on drugs that affect the immune system. We give this advice because we have experience of many patients getting life threatening complications while on holiday abroad even though they felt well when they left the UK.

At home

It may be useful to make up the spare room. Many patients can have disrupted sleep patterns after transplant. This will mean you can watch TV or read a book without feeling guilty about disturbing your partner.

We can introduce you to other transplant patients – this can help pass the time but also provide you with a useful network of support and advice.

If you have any suggestions for tips that we can add to this list then please let us know!

© Leeds Teaching Hospitals NHS Trust 2013 • 3rd edition Ver 1Developed by Suzanne Liebersbach, Haematology Unit SisterDesign by Medical Illustration Services • MID code: 20150922_003/JGPrinted by LTHT Print Unit W*****

LN002657

Production date 09/2015

Review date 09/2017

Leaflet printing funded by the Yorkshire Cancer Centre Appeal supporting St James’s Institute of Oncology

www.yorkshirecancercentre.org.uk

aiming higher fighting cancer