Autologous Bone Marrow and Peripheral Blood Stem Cell Transplantation

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This section has been designed to discuss and explain various aspects of bone marrow and peripheral blood stem cell transplantation. In some areas only general information is given. No two patients are alike and it is therefore impossible to answer every person’s individual questions. If questions arise as you are reading the information, you might find it helpful to list them in the space provided at the back. Specific individual treatment may vary from this booklet. Please do not hesitate to ask if you have any questions or require more information.
General aspects of transplantation

What is a transplant?

To understand transplantation you need to know something about the function of the bone marrow. The bone marrow is the soft material inside the cavities of bones which makes various components of the blood and immune system. Certain cells known as stem cells are usually found in the bone marrow, they produce the following components of the blood:

Chemotherapy and radiotherapy suppress the production of all cells in the bone marrow. Following conventional doses of treatment the bone marrow recovers, given time, and produces normal numbers of blood cells. However, high dose chemotherapy and radiotherapy, given to increase the chance of curing the disease, suppresses the function of the bone marrow so severely that it cannot recover. Insufficient numbers of blood cells are then produced. This would result in the patient becoming anaemic and having an increased risk of life threatening infection and bleeding.

It is possible to restore bone marrow function by transfusing bone marrow or peripheral blood stem cells which are collected and stored before the high dose therapy is given. When the transplanted cells establish themselves in the bone spaces they restore production of normal blood counts. This procedure is called either a bone marrow transplant or a peripheral blood stem cell transplant.

Types of transplant

Bone marrow is taken from the patient when the disease is in remission. It is then stored and is transfused ‘transplanted’ into the patient after the patient has received the high dose chemotherapy and/or radiotherapy. After a period of time the bone marrow engrafts (grows) and normal blood counts are restored.

PBSCT is a relatively new form of transplantation, which in some patients can be used as an alternative to autologous bone marrow transplantation.

Only very small numbers of stem cells are usually found in peripheral blood. Following the administration cyclophosphamide chemotherapy and subsequent daily injections of growth factors large numbers of stem cells can be ‘pushed’ from the bone marrow into the peripheral blood. These can then be collected and stored. Following high dose chemotherapy and/or radiation treatment the stem cells are reinfused ‘transplanted’. After a period of time the stem cells engraft (grow) and normal blood counts are restored.

The transplant team will discuss with you which method of transplantation is selected for you.

Why do I need a transplant ?

Transplantation may be a treatment option for patients when:

• malignant disease affects the function of the bone marrow;

• it is necessary to give high doses of chemotherapy/radiotherapy in the attempt to cure certain tumours.

Other factors that the doctors will take into account when considering whether to recommend a transplant are the age and the general health of the patient as the procedure is demanding, both physically and psychologically.

What are the risks of transplantation ?

The main risks associated occur during the period when your marrow is recovering, ie. two to three weeks after the transplant. At this time, you are at risk from potentially life threatening infections and bleeding.

Unfortunately, despite the powerful effect of the high dose chemotherapy/radiotherapy, this treatment is not a guarantee of cure. Some patients will relapse following transplantation.

The treatment may be unpleasant and carry significant risks but there is also the possibility of great benefit.

Before your treatment starts

There are a variety of blood tests and investigations which you will be required to undergo prior to the doctor confirming your suitability for transplantation. The combination of tests will include some or all of those listed below. These will be organised by the BMT Co-ordinator, after discussion with you, at your clinic appointment. The tests will be completed on an outpatient basis and there is no need for you to be admitted to the hospital. The results will be used by the doctors to select your treatment plan of chemotherapy/radiotherapy.

Blood tests

Various routine blood samples are taken at the clinic appointment. These include a full viral screen which includes an HIV and Hepatitis tests. These are routine blood tests for anyone contemplating transplantation.

Disease staging

A bone marrow sample or a CT scan may be performed to assess the status of your disease.

Glomerular filtration rate

This investigation measures how your kidneys are working.

You will be given an injection into a vein in the arm. A blood sample will then be taken four hours later. You may leave the department between injection and blood sample.

Cardiac blood pool scintogram (MUGA)

This test measures how your heart is functioning.

The investigation involves two injections in a vein in your arm at an interval of 20 minutes. A series of pictures of the heart is then taken with a gamma camera while an ECG recording is made. You will be lying at rest on a couch.

Lung function tests

This test measures various aspects of your lung function. You will be required to blow or suck air and hold your breath at various points. The test takes approximately 20 minutes. If you normally take inhalers you should inform the technician of this.

Cervical cytology

Female patients will be offered a cervical smear test which would be repeated at regular intervals following the transplant. This is part of a study to ascertain if those women who receive immunosuppressive therapy are at increased risk of cervical cell changes.

Dental examinations

Some patients will be required to have a complete dental examination. Decayed teeth and gums can be a common source of infection in patients undergoing high doses of chemotherapy and/or radiation therapy. It is important that any potential source of oral infection be treated before your transplant. If necessary the doctors will refer you to the Department of Oral Surgery.

Fertility treatment

Some patients will already be infertile as a consequence of previous treatment. If you are not already infertile it is very unlikely that you will be able to have children following transplantation. There are some rare reports of patients recovering fertility but this seems dependent on their sex, age at transplant and previous therapy.

For men there is the option of sperm banking.

For women, unfortunately, the storage of eggs is more difficult. There is the possibility of storing embryos, ie eggs fertilised by sperm.

If fertility is an issue you must discuss this with a member of the transplant team before your admission to hospital.

Financial considerations

This can be a major cause for concern. A social worker is available to offer guidance and support related to this issue. You may well be entitled to help that you were unaware of. The Bone Marrow Transplant Co-ordinator will be happy to arrange an appointment for you if required.

Wigs

Alopecia (total hair loss) is an inevitable side effect of high dose therapy. The loss is usually temporary and the hair will start to grow back within two to three months of completing therapy. The loss of hair can be very distressing. Wigs are available, (free to NHS patients), and if you have not already got one you may wish to arrange this before your admission to hospital. Alternatively, you may wish to purchase one from a hairdresser or department store. It is also advisable to bring in hats, scarves or turbans as you may find that it is too hot to wear your wig in hospital.

Prescriptions

After your discharge from hospital you may be prescribed numerous medications. Unless you are exempt from charges this can become very expensive. You can obtain a form from your pharmacist which will enable you to apply for a card which, for a set fee, will cover all prescription charges for four months. Ask the Bone Marrow Transplant Co-ordinator if she would advise you to obtain one of these cards.

Central/Hickman line

If you do not already have a central line, prior to starting your treatment you will have a central venous catheter inserted. This is a soft, flexible, hollow tube inserted through the skin of your chest into a large vein. The purpose of this is to make the administration of your treatment easier. There are several advantages to having a line. It can be used to administer all cytotoxic drugs, blood products and other drug therapies you may require. In most people, blood samples can be taken via the line, however some may still need to be taken from your arm.

The line is usually inserted on the ward by a doctor or in X-ray by a radiologist. Local anaesthetic will be injected into the insertion site to numb the area. It is inserted into a central chest vein through a small incision just under your collar bone. The line is then stitched in place and an X-ray is taken to ensure that it is in the correct position. The line, if uncomplicated by infection, can stay in place for weeks or months if necessary. You may go home with the line still in place and will therefore be taught how to care for it by the nurses on the ward prior to your discharge.

Stem cell harvest

Prior to the transplant you will have stem cells collected from either the bone marrow or peripheral blood stream. This process is termed a ‘harvest’.

Bone marrow harvest

This is always carried out under a general anaesthetic in the operating theatre. The bone marrow is taken from the hip bones and occasionally the breast bone (sternum). Approximately one to two pints of marrow is collected. The volume depends on the number of cells required to ensure that the transplant would be successful.

The marrow is then taken to the haematology laboratory. Depending on the type of transplant, it is either then stored on the shelf to use within three days or processed and frozen to be used at a later date.

After the harvest you will receive two units of blood to replace the volume of marrow removed. Most people experience some discomfort for two to three days. This is usually well controlled by mild painkillers but may continue to a lesser degree for seven to 10 days.

If you are not going to proceed immediately on to transplantation, you should be well enough to go home the day after your harvest.

Peripheral blood stem cell harvest

Only very small numbers of stem cells are usually found in the peripheral blood. To enable us to collect sufficient numbers of stem cells for transplantation, it is necessary to administer a single dose of cyclophosphamide chemotherapy followed by daily injections of growth factors. Over a period of approximately 10 days, high numbers of stem cells are then mobilised from the bone marrow into the peripheral blood. These can then be collected, stored and subsequently used for transplantation. This procedure necessitates two short admissions to Ward C10.

First admission

A single dose of cyclohosphamide chemotherapy is administered over one to two hours as an intravenous infusion. You will receive additional intravenous fluids for a period of approximately 24 hours. The side-effects of cylophosphamide chemotherapy are:

• nausea and vomiting (usually well controlled by anti-sickness drugs);

• diarrhoea;

• alteration in taste (this will return to normal in time);

• hair thinning or alopecia (total hair loss).

The day after the chemotherapy you will be given an injection of growth factor (GCSF). These injections are given by small needles into the fatty tissues. You will need to continue these daily until re-admission for stem cell collection. The nurses will teach either you, or a member of your family, to give these injections. If this is not possible, alternative arrangements can be made.

You will then be discharged home for a period of approximately 10 days. You will be given specific instructions by the ward staff concerning potential side effects whilst at home. They will also instruct you how to contact the ward if necessary. During these ten days your blood count needs to be monitored daily. The Bone Marrow Transplant Co-ordinator will make the necessary arrangements for this prior to your admission.

Second admission

Once the white blood cell count has reached a sufficiently high level, you will be re admitted to the ward for the stem cell collection. This will be confirmed at very short notice (12–24 hours) uby telephone.

The stem cells, circulating at very high levels in the peripheral blood, are collected by a process of cell separation using a machine similar to a kidney dialysis machine. This is a complex procedure which will be explained in detail by the intravenous nurse specialists.

This procedure will take two to three days. During this admission you should feel fit and well and suffer no side-effects from the treatment. Your stem cells are collected and are then stored in the freezer.

Ward C10 – the Bone Marrow
Transplant Unit

Ward C10 specialises in the treatment of patients with various haematological diseases. The treatments include bone marrow and peripheral blood cell transplantation. Both medical and nursing staff have specialist knowledge and training in this sphere of medicine. The ward consists of 14 beds, most of which are single rooms.

For the transplant procedure you will be nursed in a single room. Each room has its own en suite shower and toilet facilities, TV, video, small fridge and exercise cycle. You will not be isolated in this room and may socialise within the ward. When your blood counts are low you will not be permitted to leave the ward as this increases the risk of contracting infection. You are welcome to visit the ward prior to admission and the BMT Co-ordinator will arrange this if you wish to do so.

During your stay you are actively encouraged to decorate your room with pictures, posters etc. Some people bring in their own pillows, duvets, cassette players, photographs etc to make their stay more comfortable.

The ward has a relaxed atmosphere and practices a philosophy of care that includes the family as well as the patient.

Medical staff

The consultant medical staff looking after the patients on the unit are:

Dr Marcus

Dr Baglin

Dr Green

Dr Russell

Throughout your admission you will be assessed by a team of doctors daily. Consultant ward round takes place twice a week on Monday and Thursday afternoons.

Nursing staff

The nursing staff are divided into two teams (blue and red). You will be nursed by one team of nurses throughout your admission. Each team is responsible for providing total nursing care within a specialised area of the ward. The aim of team nursing is to provide continuity of care, individualised family care and reduce the number of nurses the patients come into contact with during their stay.

Other staff you may come into contact with during your stay and who are available should you need them are:

• social worker;

• dietician and nutrition sister;

• physiotherapist;

• ward pharmacist;

• hospital chaplain;

• haematology research nurse;

• BMT co-ordinator.

 

Telephones

A pay phone is situated in the day room. This may be moved to your room if you wish to make a private call. Friends and relatives can ring in on this telephone and ask to speak to you, the number is 01223 243002. If they wish to speak to a nurse they should use the ward telephone number 01223 217255 or 217312.

Visiting

There are no restrictions on visiting times on the unit. Relatives are welcome to stay if they have difficulty in travelling or if the patient wishes them to. There are various facilities available for relatives’ use. A number of rooms are available in the nurses residence. There is a big demand for these rooms and it is not always possible to guarantee their use. When no room is available, it may be possible to stay on the ward. This should be discussed with the nurses. Children are not permitted on the unit. However, individual patient’s circumstances differ and this should be discussed with the medical or nursing staff.

People who have been in contact with chicken pox, measles or who have colds or flu must not visit. If there is any doubt who should visit the unit this should be discussed with either the nursing or medical staff before visiting.

Research

Addenbrooke’s NHS Trust is a teaching hospital and as such research studies are undertaken as part of patient care, with the aim of improving future treatment. There are often several studies in progress on Ward C10. With your knowledge and approval you may be asked to participate in one or more studies.

Each area or research will be fully explained to you and your consent to take part gained beforehand. Please feel free to ask any questions about each study. None of the studies will interfere with your basic treatment, and each has been approved by the Ethical Committee.

Parking

Parking can be a major problem around the hospital site. Charges are made for parking and this can become a significant expense for your regular visitors. Provisions can be made to reduce the cost. The ward clerk or nurses on Ward C10 will be able to instruct you regarding this matter.

Hospital facilities

There are various shops situated on the ground floor of the hospital. Hospital volunteers or ward staff will be happy to shop for newspapers etc for patients. There is also a Barclays Bank situated in the main concourse.

Personal belongings

Most patients are well enough to get up and dressed each day. Therefore we suggest you bring some comfortable day clothes to wear. You will also need a few changes of night clothes. Unfortunately the ward cannot offer laundry facilities. Towels are available from the hospital laundry. Whilst your platelet count is low you are advised to brush your teeth with a soft toothbrush, which you may need to purchase prior to your admission.

Although much of your day will be taken up with medical and nursing procedures, there will be times when you are bored and frustrated. It is a good idea to bring in some books, jigsaws, pens and papers etc.

Fresh flowers and pot plants are not permitted on the unit.

Smoking

Addenbrooke’s NHS Trust is a non-smoking hospital. Smoking is not permitted in patient areas.

Transplant admission

First week of admission

Conditioning regimen

This is the terminology used for the chemotherapy and/or radiotherapy prescribed to treat your disease and permit engraftment of the transplanted stem cells. The chemotherapy and/or radiotherapy is given to you during the first week of admission. During this week you should feel well enough to get up, shower and dress and you may go off the ward for short periods if you wish.

There are many side-effects of chemotherapy and radiotherapy. The majority of these can be prevented or treated, and therefore made more tolerable. They will occur at different times during your admission.

Immediate side-effects

Nausea and vomiting

This is a side effect associated with chemotherapy and total body irradiation. However, it can usually be controlled, or greatly reduced, by using anti-emetic (anti-sickness) drugs.

Diarrhoea

Radiotherapy and certain cytotoxic drugs can cause this to occur during the first week of admission. To ensure it is treated promptly, inform the nurses as soon as it occurs. When the doctors know that there is no infection causing the diarrhoea, they will prescribe medication to reduce the symptoms. There are many other side- effects of chemotherapy and radiotherapy but these tend to occur after the transplant, ie during weeks two to four of admission.

‘The transplant’

This takes place approximately 24 hours after completing chemotherapy. The day of the transplant is called day ‘0’.

The bone marrow or peripheral blood stem cells are given to you via your central line in the same manner as a blood transfusion. The whole process takes only 30–60 mintutes.

If your cells are frozen they will be thawed on the ward and then transfused to you. There are usually four to five bags of cells, given in rapid succession. The preservative used during freezing, (DMSO), may cause you to experience a peculiar taste and smell, this disappears after a few days. The DMSO is a drug and it is possible that you may ‘react’ to it. A ‘reaction’ usually results in you feeling cold and shivery and possibly developing a skin rash or a feeling of tightness in the chest. In order to try and prevent this you will be given intravenous steroids and anti-histamines prior to the infusion. If you do ‘react’ this will not affect the success of the transplant in any way.

Weeks 2–3

You may experience some or all of the listed side-effects at various times throughout your admission.

Alopecia (total hair loss)

This is an inevitable side-effect of all conditioning regimens. Loss of body hair occurs initially from the head but also from the eyebrows, eyelashes, underarm and pubic area.

The loss of hair can be distressIng. It often falls out in clumps from the head when brushed or is rubbed of on your pillow. Some people will prefer to allow it to fall out slowly whereas others will prefer to have it shaved of as soon as patching occurs. The nurses on the ward can do this for you if you wish.

As stated previously wigs are available, free to NHS patients, and if you wish this can be arranged during your first week of admission. Alternatively, you may wish to purchase a wig from a hairdresser or department store prior to your admission. You should also bring in hats, turbans and scarves in preparation for the hair loss.

The loss is temporary and regrowth will start with the head and underarms initially, approximately two to three months after completing chemotherapy. Eyebrows and eyelashes grow more slowly and regrowth may take longer. Re-growth may be slightly different in colour and texture, initially.

NB One drug called Busulphan, which is given to certain patients may cause permanent Alopecia. This risk should be discussed with you in detail by a member of the transplant team.

Mucositis (pain and ulceration of mouth and throat)

As a consequence of the conditioning therapy, your mouth and throat may become tender, swollen and ulcers may form. This can be a very distressing side effect. Unfortunately it is impossible to prevent, but usually the associated pain is controlled by oral or intravenous painkillers. You can help to reduce your discomfort and the risks of infection by performing mouth care regularly, as instructed by the nurses. When suffering from mucositis you will probably find that your appetite decreases and you may be unable to eat and drink. A dietician is available to give you advice and to supply high protein/high calorie dietary supplements. If you are unable to eat, it may necessary to give you artificial feeding in the form of total parental nutrition (TPN). This is an infusion of nutritional supplements given to you through your central line. It is a common occurrence and a specialist nutrition team will liaise with the medical staff to devise an appropriate feeding regimen for you.

Diarrhoea

As stated previously, this can occur at the time of the conditioning regimen itself. Additionally it might occur at any time throughout your admission or indeed even after you have been discharged from hospital. Medication can be prescribed to reduce the symptoms, if it is known that infection is not causing the diarrhoea. To ensure that it is treated promptly please inform someone as soon as it occurs.

Bone marrow suppression

As the chemotherapy and radiotherapy kills the rapidly dividing cells in the bone marrow we expect to see a drop in the number of circulating white and red blood cells and platelets shortly after treatment. Your new bone marrow or stem cells will establish themselves and slowly regenerate. The process of regeneration can take between two to five weeks, depending on the type of transplant. This is termed ‘engraftment’.

Tiredness and anaemia

You will certainly feel tired for a variety of reasons, one of which is that you will inevitably become anaemic, periodically, whilst your bone marrow is not making adequate amounts of red blood cells. This will be corrected by blood transfusions as necessary. It is not uncommon to require blood transfusions after discharge from hospital.

Bruising and bleeding

Whilst your bone marrow does not produce platelets you may find that you bleed very easily, from your nose or gums or develop a petechial rash. Petechiae are areas of small purple/red spots (tiny bruises) which may develop on your body when your platelet count is very low. Platelet transfusions will be prescribed to prevent bleeding until your transplanted bone marrow engrafts and produces sufficient number of platelets. These transfusions may need to continue following your discharge from hospital.

Infection

With a reduced white cell count you are at an increased risk of infection and fevers. There are many routine precautions taken to prevent infection including nursing you in a side room, restricting your diet, strict mouth care and prophylactic antibiotic medication.

Despite these precautions almost every patient will develop a temperature at some point during their admission. If your symptoms suggest the presence of infection a series of observations, blood tests, and investigations will be taken. If these indicate infection, you will be given intravenous antibiotics. This process may occur several times during your admission.

There are numerous nursing and medical interventions needed while your blood count is low including blood products and antibiotic infusions, regular observations of your temperature and blood pressure as well as daily examinations and investigations.

VOD (veno occlusive disease)

This occurs in only a small number of patients. It is caused by the chemotherapy/radiotherapy.

The disease affects the liver and results in abnormal liver function. This, in turn, causes jaundice (yellowing of the skin, eyes and urine). The disease can be treated, but in a very small number of patients may prove fatal.

Emotional changes

Having a transplant is very demanding, physically and emotionally. Your family and friends too, may find this a very stressful time. You are likely to experience a wide range of emotions during your hospital admission such as anger, fear, boredom, frustration, depression, and tiredness. These feelings happen to everybody in varying degrees and can be complicated by circumstances at home. You should not be too concerned; there are various people who may be able to help you, eg the nurses on the ward, family, friends, social worker, counsellors, BMT Co-ordinator, and if necessary physiologists and specialists. If you have particular concerns before your admission for transplant it may be helpful to talk to someone who has already undergone this treatment. The BMT Co-ordinator may be able to arrange this is you think if may be helpful.

Weeks 3–4

The term engraftment is used to describe the process of bone marrow recovery and the production of sufficient neutrophils to fight infection. This process occurs at various times, depending on the type of transplant. Following Autologous transplantation engraftment occurs approximately two to four weeks after the transplant.

During this period, blood tests are taken regularly to assess when you need blood and platelet transfusions and determine when engraftment occurs.

This can mean the waiting period is boring, frustrating and difficult to tolerate. Some of the side-effects of treatment are at their worst during this period, eg sore mouth and infections.

You will probably find that your powers of concentration become very much reduced at this time. We suggest that you bring plenty of things to help pass the time eg books, videos, knitting, sewing, or model making. Most people do feel well enough to get up, shower, dress, chat with visitors etc. Family and friends can organise a rota for visiting to ensure that only two to three people visit per day.

Your blood cell count should slowly start to recover and when your white cell count has recovered sufficiently and there are no other complications of transplantation the doctors will discuss possible discharge dates with you.

The expected duration of hospital admission and absence from employment.

These are general guidelines only. Each patient will differ. Your return to work should be discussed with the doctor. The average inpatient admission following transplantation is :

bone marrow – four to five weeks

peripheral blood – three to four weeks

Every patient will need a period of recovery after discharge from hospital. Again, each patient will differ. The recovery following autologous transplantation does take time. One should plan for approximately four months absence from work.

The role you play during your admission

We cannot predict which of the side-effects you will have or how serious they will be. There are medications we can give to try and remove some of the symptoms. It is important that you tell us how you are feeling. In this way, you can help us to care for you.

The focus of care is engraftment (new growth) of the bone marrow. Before engraftment, your white cell count drops to as low as zero. This is termed neutropenia. Whilst neutropenic your resistance to infection is low. There are many measures which you can take to reduce the risk of infection developing.

Keeping active

Lying in bed for long periods can increase your risk of developing chest and urinary tract infections. If you are active you will be able to participate in your own care. It is very easy in hospital to feel that your life has been ‘taken over’ by your disease and nursing/medical staff. This can make you feel helpless and frustrated. Keeping active getting up and dressing in day clothes each day taking advantage of the exercise bicycle available on C10 and participating in your own care can give you back a little control over your daily routine.

Personal hygiene

This involves being particularly careful about hygiene measures you probably already take, ie showering daily, changing clothes (day and night) daily, wearing slippers/shoes when out of bed and thoroughly washing and drying hands before eating, touching your central line, doing your mouth care, or after using the toilet/commode.

Food

One source of infection is certain foods and drinks. Food from the kitchen should be eaten straight away as it cannot be reheated. Ready prepared foods such as frozen pizza or shepherds pie should be of a well known brand and should be stored and cooked (following instructions on the packet) well before the ‘best before date’.

If you are unable to eat your meal, inform your nurse. An alternative meal or high calorie drinks may be provided. If you are unable to maintain adequate nutritional intake, the doctors may prescribe artificial feeding. This is called total parenteral nutrition. It is a carefully prepared combination of proteins, sugars and fats which is given as an intravenous infusion.

The chemotherapy/radiotherapy may alter your taste sensation, reduce the amount of saliva produced and affect your appetite. One or more of these problems may continue after you have been discharged from hospital. To prevent significant weight loss, it is important that you inform a member of the transplant team as early as possible. The dietician will be contacted and will be able to advise you appropriately.

Whilst neutropenic you should adhere to food restriction policies.

Mouth care

Inflammation and ulceration of the mucosal membrane (lining of the mouth and gastrointestinal system) will lead to pain and discomfort. It also causes susceptibility to infection. Good mouth care helps to keep your mouth clean, moist and comfortable. It will also help reduce the risk of developing an oral infection.

We advise you to adhere to the following guidelines.

1. Use a small headed, soft toothbrush and toothpaste for cleaning your teeth. Use gentle horizontal strokes to protect delicate gums. If your gums become sore, use mouth washes only.

2. If you wear dentures, they should be removed at night, cleaned and then soaked in Corsodyl. It may also be necessary to remove them if you suffer from mouth ulcers (remember to remove them prior to using your mouth wash).

3. After cleaning your teeth, rinse your mouth thoroughly for one minute using one capful of Corsodyl solution. Then spit out the solution – do not swallow.

Mouth care should be performed four hourly initially and two hourly when you become neutropenic (your nurse will inform you of this) or if your mouth becomes sore.

When your mouth becomes sore you can use an additional mouthwash called Difflam. This has a numbing effect and can be used before washing with the Corsodyl. It is not a substitute for Corsodyl as it has no antibacterial properties.

Soluble Paracetamol mouth wash is fairly effective for a sore mouth and may be used in conjunction with Difflam and Corsodyl. Paracetamol gargles should not be swallowed as it may mask a fever.

If your mouth remains painful do not hesitate to tell the nurse who is looking after you.

Medication

You will be prescribed various medication to help prevent infection (antibiotics, anti viral drugs and anti fungal drugs). These will vary from patient to patient. The nursing staff will be able to explain the use of each. It is important to take the tablets prescribed to you. If you have any problems taking them or you do not understand the reasons for taking them, please ask one of your nurses or your doctor.

Environment

Fresh flowers, pot plants and fresh fruit are not permitted on the unit because they carry bacteria. You are allowed silk flowers and can eat tinned fruit. Visitors should wash their hands with Hibisol before entering your room. People with colds, flu or any other infection are not allowed to visit, neither should people who have been in contact with shingles, chicken pox, measles or any other childhood diseases.

Checking for infection

Some infections cannot be prevented despite all precautions. Whilst neutropenic any symptoms of infection are noted and treated promptly.

The medical and nursing staff will be observing closely every day for signs of infection eg raised temperature, pulse and low blood pressure, the condition of your mouth is inspected and regular samples and specimens are taken.

You can help by reporting any symptoms that could suggest an infection for example a sore throat, feeling hot or shivery, a sore central line site, diarrhoea or pain on passing urine.

We are aware that you may be overwhelmed by the volume of information given. We encourage you to ask your doctors or nurses any questions you might have concerning this information.

Going home

Return home following a transplant is a very special time for you and your family. It may be both exciting and worrying. Having spent many weeks in hospital most patients feel a degree of anxiety. Family members, too, may be concerned with the responsibility of caring for someone without the constant presence of hospital staff. Feeling confident and comfortable at home is a process that takes time. The need for continued precautions in the months following transplantation may add stress to your family life.

This is a time of convalescence and recovery. You and your family may expect you to feel and act as you did before the onset of your illness and the beginning of your treatment. This will not happen immediately. Many patients have feelings of fatigue and weakness and many also have a decreased appetite. If will take time to regain your strength. Please remember, during this stressful time, you can always phone and discuss problems or ask any questions you may have.

Outpatient appointments

When you are discharged from hospital your care will continue on an outpatient basis. An appointment date and time will be given to you prior to discharge from Ward C10. The objectives of your clinic visits are :

1. Checking your physical and mental

well being.

2. Taking and monitoring blood samples.

3. Checking for any signs of infection

and complications.

4. Altering any medication you may be taking.

5. An opportunity for you to ask questions.

If you require hospital transport please speak to nursing staff on C10, Maggie (C10 Ward Clerk), or the outpatient reception desk. To provide hospital transport we usually require at least 48 to 72 hours notice. If you find it difficult to meet the cost of travelling to outpatient appointments, please ask to be referred to a social worker who may be able to help.

If anything is particularly worrying you, or if you have a specific problem, please do not hesitate to discuss this with either the doctor, BMT Co-ordinator or clinic nurse. We can only help if you make us aware of the problem.

The frequency of appointments depends on the type of transplant you have received. You may also need to have further platelet and blood transfusions for a short period after discharge from the ward.

Caring for yourself

When discharged home you are responsible for caring for yourself. It is important that you are aware of the potential complications you may encounter. Infections remain a matter of concern until your immune system is completely recovered. Risk of bleeding may also be of concern until your bone marrow has recovered. The risk of potential complications lessens in time. It is important that you report any abnormal symptoms to a member of the transplant team.

Infection

Transplant recipients remain at risk of infection for six months to one year after the transplant. This differs according to the type of transplant.

It is important that you are aware of the symptoms of infection. Prior to being discharged home you will be taught how to take your temperature. Whilst your blood counts remain abnormal you should take your temperature, orally, morning and night. If you have any reason to suspect an infection ie sore throat, shivers, cough, discharge from a line site, generally feeling unwell etc then take your temperature and contact the transplant doctor, the BMT Co-ordinator or Ward C10, immediately whether your temperature is raised or not.

Avoid contact with people who have colds and flu. You should avoid contact with anyone who has chicken pox, measles or shingles or if they have received MMR/Polio vaccinations for two weeks following their diagnosis/vaccination.

Make sure your pets are kept clean, free of fleas and that you do not have close facial contact with them. You should not keep birds as pets.

Depending on the chemo/radiotherapy you have received you may also be given specific antibiotics to prevent certain infections which may occur after transplantation.

If you suspect that you may have shingles, (ie any pain, tingling, burning sensation or rash on one side of the body) you must contact the transplant team immediately. Do not visit the ward or the out patient department as you may then infect other vulnerable patients.

Bleeding

You may continue to require platelet transfusions after discharge from hospital. You should contact the ward immediately if you develop any of the following:

• abnormal bruising or bleeding,

blood in your urine or stools;

• small blood spots (petechiae) on

your body;

• a headache which does not respond

to Codeine;

• a persistent nose bleed;

• anaemia.

You may experience symptoms of anaemia, eg feeling tired, listless, breathless, or dizziness on standing. It is not uncommon for some patients to need blood transfusions after discharge
from hospital.

NB If you are given any blood products after the transplant these must be CMV negative and irradiated.

Eating and drinking

You should continue to adhere to the food restrictions until the doctors discontinue your ciprofloxacin antibiotics. If you have any doubts about resuming a normal diet the nursing and medical staff will be able to discuss this. You should continue to take sensible precautions
with food:

• be meticulous about food hygiene;

• comply with food storage instructions

and expiry date;

• avoid take-aways, soft cheeses, pate,

and unpasteurised products;

• use fresh fruit, vegetables, bread

and milk.

If you experience any eating difficulties such as lack of appetite, taste alterations, or a sore mouth please do not hesitate to discuss this with the BMT Co-ordinator or clinic nurse who will be able to refer you to the dietician.

Hygiene

Continue with a daily bath or shower, using a mild soap. Your skin may become drier and more sensitive than normal due to the treatment you have received. If this occurs you may need to use a non irritating oil or lotion, eg baby oil. If your skin develops and itch, rash or becomes red contact the transplant unit immediately.

Mouth care

For a few months following treatment, your mouth may be drier and more sensitive than normal. Your saliva production may be reduced. These problems will resolve themselves in time. If you remain neutropenic you should continue a regular programme of mouth care as performed in hospital, at least three times a day.

Hair

When your hair regrows, it will initially be very fine and fragile. Use a gentle shampoo (not medicated or dandruff shampoo).

Hickman/central line

If your line remains place after discharge from hospital the nurses on the ward will instruct you in how to care for it and give you appropriate information.

Dental care

Following bone marrow transplantation we advise you to maintain a high standard of dental care in order to prevent dental decay and gum disease.

Most routine dental care required after your transplant can be carried out by your own dentist. Your dentist and dental hygienist will advise you on a programme of dental hygiene including advice on brushing, flossing and use of mouthwashes as well as suggesting any care you might be advised to take with your diet.

We recommend that you avoid fizzy drinks, except those made with carbonated water, maintain a low sugar diet and reduce acid in the diet such as fruit juices.

You will normally have your teeth checked about every six months but it is best to discuss with your dentist how often you should attend for screening.

When you have your routine check up please ask Dr Marcus, or a member of his team, if you require antibiotic cover for any procedures which may need to be carried out. We will liaise with your dentist on any special precautions that have to be taken.

If there are any difficulties with your dental care the oral surgeons at the hospital will be happy to advise you and can assess you if required.

Activity/exercise

You will feel tired and lethargic when you are discharged from the ward. Remember this is normal and to be expected. It takes time to build up endurance. Try to do a little exercise each day –walking is a good form of exercise. You may find that you need to sleep during the day.

Returning to work

Do not contemplate going back to work until you feel fully able to cope. You should discuss your return to work with a doctor.

Sexual activity

Although chemotherapy and radiotherapy affects your ability to have children it does not affect your ability to enjoy sexual activity. You should be able to engage in normal sexual activity after your transplant. Resuming sexual contact depends on how you feel. Cleanliness and lubrication are important during intercourse to avoid irritation and possible bleeding or infection.

A woman’s vagina may be drier than usual, initially, so a lubricating jelly for example KY jelly should be used to avoid possible problems. Females will experience a premature menopause. For this reason we recommend use of hormone replacement therapy after transplant. This will be discussed with you at your clinic appointment.

Males may notice a temporary decrease in sexual desire. This may be related to a temporary decrease in hormone levels and will resolve itself as hormonal levels return to normal.

If you are concerned about your libido please discuss this at your clinic appointment. We can take blood samples to assess your hormone levels and may be able to resolve the problem quickly with medication.

Although it is probable that you will be made infertile by the chemotherapy/radiotherapy you should still use contraceptives as this is not 100% guaranteed. There is a small amount of evidence that a minority of patients recover fertility following transplantation.

Socialising

You should avoid people with viral infections, hence it is wise to avoid, enclosed, crowded, smoky places, ie pubs, busy shops, cinemas at peak of viewing etc. until your blood counts have fully recovered. If you have been in contact with someone who then develops chickenpox, shingles or measles, please contact the transplant team immediately.

Travel and holidays

You should not plan a holiday immediately after discharge from hospital. If you wish to go abroad, you should consult with the medical staff. They will be able to give you advice on immunisation. You must not have any live vaccines. If necessary they will be able to arrange medical supervision in the area you wish to visit.

When you do go abroad you should ensure that you have comprehensive medical insurance. If you are an EC citizen travelling within the EC you should obtain a charges exemption certificate before you leave the UK.

By the end of the first year your immune system will probably have returned to normal, and the bone marrow will be manufacturing blood normally. You should continue to be vigilant and you will continue to have regular check-ups, which may include a bone marrow sample or a CT scan. You may get infections such as shingles and chest infections, and if so you will need prompt treatment. It is very important to keep in close contact with the doctors and discuss any problems and worries.

Swimming

You should not use a public swimming pool for six months following your transplant.

Potential late complications of transplantation (two to 12 months after transplant)

You may be dismayed by the list of potential complications below, please remember most of these are uncommon. We have included a full account of them to ensure that you are fully informed prior to undergoing such a major treatment intervention.

Infection

See previous notes.

Lung tissue changes

As a consequence of some chemotherapy and TBI, the tissues in the lungs may be affected following the transplant. This may result in a higher risk of suffering from certain types of infections, or an inflammation of the lung tissue itself. Prior to discharge you should be given instructions to report any abnormal symptoms, ie breathlessness or persistent cough to the transplant centre. If necessary we may organise repeat lung function tests and commence steroid therapy.

Infertility

As stated previously it is very unlikely that you will be able to have children following transplantation. For some, this may not be an issue before transplantation but may become one in the years following recovery. Fertility treatments are rapidly evolving. We hope that you will feel able to discuss this aspect of your life with a member of the transplant team so that we can offer guidance, support and referral
as appropriate.

Endocrine dysfunction

The vast majority of women will experience a premature menopause as a result of conditioning therapy. As a consequence we recommend that you commence hormone replacement therapy, after transplant, to counteract those symptoms associated with the menopause.

Many people experience difficulty resuming a sexual relationship following transplantation. This may be due to a variety of reasons for example following a long period of hospitalisation, fears for their health, feelings of anxiety about their appearance, hormonal imbalance, loss of libido etc. On resuming sexual contact you may initially feel more tired than normal but this should gradually improve. If you are experiencing specific problems please try and discuss this with a member of the transplant team with whom you feel comfortable. Someone should be able to help, or refer you to a person who can. It may be embarrassing to discuss private matters but the problems do not always resolve themselves, the solution may be something as simple as altering hormone therapy. This applies to both men and women.

Conclusion

This information booklet was written as previous transplant patients had expressed a wish that they had been given some written information prior to undergoing transplantation.We feel that you have the right to be fully informed prior to contemplating any major treatment intervention and therefore the information is very frank. It is a general overview only, the risks and side-effects discussed will not apply to all patients. We hope that the booklet is helpful and informative and enables you to prepare for the transplant procedure. It may not have answered all your questions. Please make use of the space provided to write these down and discuss either at your next outpatient appointment or by contacting the BMT Co-ordinator.

When to call the transplant team ?

Please contact a member of the transplant team immediately if you have any of the following symptoms :

• fever of 38C;

• skin irritation or rash;

• any evidence of shingles, (ie any pain, tingling, burning sensation or rash

on one side of the body);

• diarrhoea or abdominal pain;

• any cough or breathlessness after walking short distances;

• any cold sores;

• persistant nose bleed;

• headache which is not responsive
to Codeine;

• blood in urine or stools;

• symptoms of Anaemia.

 

Post script

Please do not be too anxious if you have to be re-admitted to hospital, for some patients this
is expected.

If you are admitted to another hospital for any reason, please ask the doctors to inform a member of the transplant team.

Any questions ?

Please use the following space to make a note of any questions you may have.

Useful addresses and

telephone numbers

BMT Unit Director – Dr Robert Marcus

Office 01223 216747

Secretary 01223 217071

 

BMT Co-ordinator – Gilda Bass

Office 01223 217224

Bleep 01223 245151 bleep 554

Monday, Wednesday, Thursday & Friday,

8.00 am to 5.00 pm

 

Ward C10 Nurses

01223 217255

01223 217312

Any time, 24 hours a day

 

Oncology Centre

Appt Desk 01223 216551

01223 216552

 

Clinic Nurses

01223 216141 (answerphone)

Monday to Friday, 8.30 am to 5 pm

 

Leukaemia Research Fund

43 Great Ormond Street

London WC1N 3JJ

Tel: 0171 405 0101

 

Leukaemia Research Fund in Scotland

37 Whittinghame Drive

Glasgow G12 OYH

Tel: 0141 339 1101

Devotes all its resources to research into the causes, treatment and cure of leukaemia, lymphomas and myeloma. Provides a patient information service and booklets on the diseases and their treatment.

BACUP (British Association of Cancer

United Patients)

3 Bath Plac

Rivington Street

London

EC2A 3JR

Tel: 0800 181199 (outside London)

0171 613 2121 (from 0171 &

0181 districts)

Offers advice, information about the illness, its treatment or the practical and emotional problems of living with disease. The service is free and confidential and is open 10 am to 7 pm, Monday to Thursday, and 10 am to 5.30 pm on Friday.

Leukaemia Care Society

14 Kingfisher Court

Venny Bridge

Pinhoe

Exeter

Devon EX4 8JN

Tel: 0392 464848 Fax: 0392 460331

Groups throughout the United Kingdom. Offers support, befriending and companionship to patients and their families. Limited financial assistance is available and a small number of holiday caravans.

Hodgkin’s Disease Association

PO Box 275

Haddenham

Aylesbury

Bucks HP17 8JJ

Tel: 01844 291500
(9 am–10 pm seven days per week)

Gives emotional support, advice and information on all aspects of Hodgkin’s disease and non-Hodgkin’s lymphoma.

Anthony Nolan Bone Marrow Trust

PO Box 1767

The Royal Free Hospital

London NW3 4YR

Tel: 0171 284 1234 (Donor Dept) Runs Europe’s largest register of fully tissue-typed volunteer donors. Anyone wishing to be a bone marrow donor should contact the Donor Department.

 

CancerLink

17 Britannia Street

London WC1X 9JN

Tel: 0171 833 2451

9 Castle Terrace

Edinburgh EH1 2DP

Tel: 0131 228 5557

Offers support and information on all aspects of cancer in response to telephone and letter enquiries. Acts as a resource to over 370 cancer support and self-help groups throughout the UK and publishes a range of publications on issues about cancer.

Cancer Care Society

21 Zetland Road

Redland

Bristol BS6 7AH

Tel: 01272 427419/01272 232302

Offers emotional support and practical help where possible through support groups around the country. Telephone and one-to-one counselling, telephone link service, holiday accommodation and information on other charities and cancer-related organisations.

Cancer Relief Macmillan Fund

15–19 Britten Street

London SW3 3TZ

Tel: 0171 351 7811

Provides home care nurses through the Macmillan Service and financial grants for people with cancer and their families.

Marie Curie Cancer Care

28 Belgrave Square

London SW1X 8QG

Tel: 0171 235 3325

Runs 11 centres (hospices) throughout the UK, and a nation-wide Marie Curie nursing service, providing hands-on care for patients in their own homes throughout the day or night, free
of charge.

Further general information Your doctors and specialist nurses are in an ideal position to give you relevant information on your disease and treatment as they know your individual circumstances. Cancerbackup has a help line (0808 800 1234) and a prize winning video available in English, Italian, Urdu, Bengali, Gujarati & Hindi explaining Radiotherapy & Chemotherapy. Cancernet.co.uk has over 500 pages describing cancer, its management, practical tips and tool which patients, their carers and their doctors have found helpful during the cancer journey.


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