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 persons 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:
- Red blood cells;
Red blood cells act as a transport system carrying oxygen
and nutrients around the body. When your red blood cell level is low, you experience a
condition called anaemia. This is corrected with transfusions of red blood cells.
-
White blood cells; White blood cells help prevent and fight infection. There
are several types each with a different function. The white cell most active in fighting
infection is called the neutrophil. When your white cell count is low you are at increased
risk from infection.
-
Platelets; Platelets are cells which help control and prevent
bleeding. A low platelet count increases the risk of bleeding and bruising. This can be
corrected by platelet transfusions.
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 transplant (BMT)
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.
-
Peripheral blood stem cell transplant (PBSCT)
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 (1224 hours) by 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 patients 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
Addenbrookes 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
Addenbrookes 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 3060 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 23
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 34
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 womans 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 38ºC;
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.
Hodgkins Disease Association
PO Box 275
Haddenham
Aylesbury
Bucks HP17 8JJ
Tel: 01844 291500
(9 am10 pm seven days per week)
Gives emotional support, advice and information on all
aspects of Hodgkins disease and non-Hodgkins lymphoma.
Anthony Nolan Bone Marrow Trust
PO Box 1767
The Royal Free Hospital
London NW3 4YR
Tel: 0171 284 1234 (Donor Dept) Runs Europes
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
1519 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.
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