University College Hospital
Having Total Body Irradiation
(TBI)
Radiotherapy Department
Paediatric information series
№9
2
If you need a large print, audio or translated copy of the
document, please contact us on:
020 3447 3711 (Direct line)
020 3456 7890 ext 73711/bleep 1458
0845 155 5000 ext 73711/bleep 1458
We will try our best to meet your needs.
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Contents
Introduction5
What is total body irradiation (TBI)?
5
What is radiotherapy?
5
Preparation for young children and young people
5
TBI planning
6
Having radiotherapy
7
Side effects of TBI
8
Side effects after TBI
12
Late side effects of radiotherapy
12
Support16
Useful contact numbers
17
Space for notes and questions
22
4
5
Introduction
This booklet has been written for parents and carers whose child is having
total body irradiation (TBI) for leukaemia, lymphoma or some other
condition. Your child is having radiotherapy as part of their treatment
regimen for bone marrow transplantation (BMT). The booklet describes:
•What is TBI and radiotherapy
•How your child’s treatment is planned and delivered
•The side effects your child may experience during and after treatment,
and how best to cope with them.
We understand that this is a worrying time for children and their families.
You may feel that you have been given lots of information about your child’s
treatment. We hope this booklet answers some of your questions. If you
still have any questions or concerns, please ask. We are here for you.
What is total body irradiation (TBI)?
TBI is used as part of the regime for high dose treatment with bone
marrow transplants in patients with a leukaemia, a lymphoma, and some
rare blood disorders. The aim of the treatment is to destroy any malignant
or abnormal cells and temporarily suppress your child’s immune system.
This will then allow the new healthy bone marrow to grow.
What is radiotherapy?
Radiotherapy is the use of high energy X-rays. It is entirely painless.
It does not make your child radioactive.
Preparation for young children and young people
Before your child starts his/her radiotherapy planning and treatment,
you and he/she will have a chance to read through the appropriate
preparation books. These books explain the whole process from a
young person’s point of view.
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Whenever possible, and especially with younger children, we plan
separate visits to the mould room, CT scanner and treatment machine
in advance of the actual treatment. This gives you and your child an
understanding of what to expect through treatment.
This ensures your child is comfortable and familiar with what is going to
happen. It will also give you a chance to meet the radiographers who
will be treating your child, and give you and your child the opportunity to
ask any questions.
For more information about these visits you may contact the
radiotherapy department play specialists on 020 3447 3792.
TBI planning
Normally a week before the TBI treatment your child will need to visit
the Radiotherapy Planning Department for a TBI Planning CT Scan.
This involves physicists and radiographers positioning your child in
the most comfortable but practical treatment position.
The treatment position will involve your child lying on his/her back
with the arms either across the chest or resting on the stomach.
Children can usually lie completely flat but taller teenagers may have
to bend their knees, with support pad underneath. The staff will take
several measurements and then perform the CT scan. No special
preparation is required for the scan.
Once the scan is complete the radiographers will mark two specific
points on your child’s pelvis. These are the co-ordinates for treatment
and ensure treatment accuracy on a daily basis. The points are
permanent and are done by placing ink on his/her skin and then
gently scratching the surface of the skin with a fine needle. You may
go into the room while your child is being positioned. However
everyone, including the parent, must wait outside the room during the
actual scan. The whole planning process takes about 30 minutes.
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Having radiotherapy
TBI treatments occur twice a day. The first TBI treatment usually
takes place first thing (09:00) on a Monday morning, with the second
treatment at least six hours later. Subsequent treatments are twice a
day. Your child will normally have a total of six or eight treatments.
The transplant team and the doctors will inform you of this. Some
children, however, will require one treatment only.
If your child is on a ward at Great Ormond Street Hospital or another
hospital, transport will be arranged to and from University College
London Hospital in between each treatment. Your child’s named
nurse will also have been given a time to attend for treatment. Your
child will have been prescribed anti-sickness medication which
needs to be taken approximately 30 minutes before each treatment.
Treatment involves your child lying on a special couch, in the same
position as when he/she attended for the TBI measurements. There
will be radiographers and physicists in the treatment room checking
the measurements to ensure your child is in the correct position.
You may go into the room while your child is being positioned.
However everyone, including the parents, must wait outside the room
during the actual treatment.
Once your child is in the right position bags of Vaseline®, or “jelly
bags” as we call them, are placed over the feet, between the ankles
and knees and over the neck. These bags are to ensure the radiation
treatment is evenly distributed throughout your child’s body.
Special measuring devices will be attached to various parts of your
child’s body (over his/her clothes) with tape for each treatment.
These small devices monitor the dose received throughout
treatment. After checking your child is comfortable the radiographers
will leave the treatment room.
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Treatment is delivered to each side of your child’s body. Once one
side has been treated, the radiographers and physicists will rotate
the couch 180° and treat the other side. Treatment takes
approximately ten minutes from each side. Your child will not feel
anything during treatment, the radiation will not hurt. It feels
exactly like having an X-ray taken. Your child will only hear a buzzing
noise when the machine switches on.
The radiographers are watching your child all the time on closed
circuit television monitors. You and other members of your family can
watch him/her and speak to him/her via an intercom system. For
younger children, parents are encouraged to chat or read stories
over the intercom. If your child is uncomfortable or feels distressed at
any time, the treatment can be interrupted and the radiographers will
enter the room to resolve any problems.
A CD player is available in the treatment room. Your child can bring
his/her own CDs to play. Story tapes and music are important
distractions, especially for younger children. During treatment we
advise your child wears light, loose clothing, such as T-shirts, shorts or
track suit bottoms. Any clothes with metal fasteners must be removed.
Jewellery, watches and glasses will also have to be removed.
The entire treatment process will take about 45 minutes.
Side effects of TBI
There will be some side effects which will gradually appear during your
child’s course of radiotherapy. These effects can vary from patient to
patient. There are side effects that occur during treatment, some happen
soon after treatment, and some can occur months or years after
radiotherapy. The main side effects that occur during treatment are:
Skin changes
During the radiotherapy there are usually no skin reactions. However,
towards the end of treatment you or your child may notice that his/her
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skin reddens and feels warm to the touch. The skin may also become
dry. These are normal reactions to the treatment. Skin reactions after TBI
are unusual. However, it is sensible to take special care of your child’s
skin during and for two to three weeks after treatment.
During the course of treatment we advise that you or your child wash his/
her skin gently using warm water and a non perfumed soap. Your child
may bathe normally, but do not use any perfumed bath gels or oils and
only use warm water. Please do not allow them to soak in a hot bath as
this will irritate the skin. Pat the skin dry with a soft towel.
Aqueous cream may be applied to the treated skin. This is a simple,
unperfumed moisturising cream which you will be given at the start of
treatment. This cream can be used from the start of treatment. It
helps prevent the skin from becoming too dry.
Do not use any other talcs, creams or lotions in the area being
treated unless advised by a member of staff.
Hair loss
Some children may have already experienced total body hair loss due
to chemotherapy. If your child has a full head of hair prior to the TBI,
there will be complete hair loss about the third week after treatment.
The hair usually starts to grow back about three months after
treatment, the new growth often being slightly different in colour and
texture.
You may wash your child’s hair gently, using warm water. Only use a
mild shampoo such as a baby shampoo and limit hair washing to a
maximum of two or three times a week. When drying, use a soft towel
and gently pat the scalp dry, do not rub vigorously. You may also
use a hair dryer on a cool setting or leave the hair to dry naturally.
Brush and comb the hair gently using a baby (or other soft) brush or a
wide rounded toothed comb.
Losing hair can be very distressing for children, particularly older
children and teenagers. If required, wigs are available on prescription
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(and free of charge for patients having radiotherapy and/or
chemotherapy) through the NHS. If you and your child wish to discuss
wigs with the hair specialist, the radiographers treating you or the play
specialist will be able to give you further information. Alternatively,
some children choose not to wear a wig, except on certain occasions.
They may choose a fashionable and practical hat, cap or scarf.
We know that children need adequate levels of iron and vitamin B, as
well as normal hormonal function, for hair to grow normally. A healthy
diet with red meat and green vegetables will help and you may ask to
see an endocrinologist (hormone specialist) if you have any
concerns.
Feeling sick (nausea) and diarrhoea
Your child may have experienced these symptoms as a result of his/
her intensive chemotherapy. Appropriate medication can control these
symptoms but the radiotherapy may intensify these reactions. Your
child will be prescribed anti-sickness tablets to take half an hour prior
to each treatment.
However, if they are still experiencing symptoms it is important to
inform a member of staff who can refer you to a doctor for further
medication. Please ask for a copy of the leaflets “Coping with nausea”
and “Coping with constipation or diarrhoea”.
Appetite
It is important that your child tries to eat a well balanced diet during
radiotherapy treatment and to drink plenty of fluids, between one and
two litres a day. This can include water, squash or hot drinksMany
children do experience a loss of appetite which may be accompanied
by a feeling of fatigue, and can last some months. These are normal
reactions to the treatment. However, the severity of the symptoms can
cause parents anxiety.
The loss of appetite may be due to a number of factors such as
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anxiety about unfamiliar surroundings or side effects of radiation or
chemotherapy treatment. It can occasionally mask a thyroid or other
hormone deficiency occurring as a result of the illness or treatment,
for which you can ask to see the endocrinologist (hormone specialist).
Your child’s appetite may be suppressed for a number of weeks or
months from the end of treatment, but they will be closely monitored
by the medical team.
Dry mouth
This usually occurs two to three days into treatment and can last up to
three months following treatment completion. This can be alleviated by
your child regularly taking drinks and performing regular mouth care
as instructed by the nurses. It is important that your child drinks plenty
of fluids, between one to two litres a day. This can include water,
squash, or hot drinks, but will vary depending upon his/her individual
needs. You will be advised accordingly by the team members.
Swelling and inflammation of the parotid (salivary) glands
(parotitis)
This affects a small proportion of patients and occurs within 24 hours
of treatment. It can be controlled with mild painkillers, although the
effects may last for only 24 to 72 hours.
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Side effects after TBI
Somnolence syndrome
Somnolence syndrome is described as excessive sleep, drowsiness
and lethargy. The majority of children undergoing TBI will experience
some degree of fatigue and drowsiness during their treatment. Allow
your child to get plenty of rest. Let him/her set their own pace. However,
many children do not have a problem with tiredness and should be
encouraged to lead as normal a life as possible.
There might be a particularly sleepy spell starting six to twelve weeks
after treatment ends and going on for two to six weeks or even longer.
You may notice that your child has a lack of energy and cannot be
bothered to do anything. This is a normal reaction to the treatment but
the long duration and sometimes the severity of the symptoms can
cause parents anxiety. Please ask for the leaflet “Coping with fatigue
and tiredness”.
If the tiredness is very severe, it is important to exclude any hormone
deficiency by a blood test. Your child will be referred to the
endocrinologists (doctors specialising in glands) who will monitor this.
Late side effects of radiotherapy
Late side effects incurred during treatment can appear to develop
months or years after radiotherapy has finished. They are the hardest
to predict and, unfortunately, when they do occur they are permanent.
Some, however, like deficiencies are easy to treat and regular followup can prevent symptoms occurring. Your child’s radiotherapy doctor
will have explained to you the potential late side effects of radiotherapy
as part of the consent process. These may include:
Cataracts
The development of mistiness of the lenses of the eye can occur
because of unavoidable radiation to the eye. This usually develops five
to six years after treatment. In many cases this will not have an effect
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on your child’s vision. However, in a small number of children they may
require surgery to remove the cataract in later years. Fortunately cataract
surgery today is very straightforward and successful. Following
treatment, your child will have regular visual checks.
Pneumonitis
This is inflammation of the lung tissue. In a very small percentage of
patients it can occur in six weeks to six months following TBI. Your
child may experience shortness of breath and a cough. If this occurs
it must be reported to the doctors, BMT co-ordinators, or specialist
nurses immediately.
Lung function
There may be some long-term effect on your child’s breathing. This is
very unusual, but if it occurs it tends to be noticeable on moderate to
severe exercise only. After treatment your child will have regular lung
function checks in a dedicated follow-up service. It is very important
that any child who has received this treatment never smokes, especially
if he/she has received chemotherapy as well.
Heart
Radiation to the heart can eventually cause later problems with function
and/or rhythm disturbance, particularly if radiotherapy is given with
certain chemotherapy drugs. This will be monitored closely in a late
effects clinic. Some treated female children show a tendency to heart
failure, particularly under the stressful conditions of pregnancy and
labour. Pre-pregnancy checks are essential and it is important that the
full medical history is known by the obstetrician and that obstetric care
is hospital-based.
Kidneys
Both radiotherapy and chemotherapy may affect the kidneys. We are
careful to minimise the risk to the kidneys but often cannot avoid
them receiving some radiation. Your child’s kidney function will be
closely monitored at follow-up.
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Female fertility
In girls it is likely that TBI will almost invariably cause pubertal arrest
and infertility, in which case hormone replacement therapy will be
necessary. Some young girls may apparently “recover” ovarian
function and retain a small window of fertility as adults. The doctors
will discuss this with you and your child. Your child should have
access to an endocrinologist (hormone specialist) for early
surveillance and detection of this problem.
Male fertility
It is highly likely that TBI will cause infertility (absent sperm production)
or affect the production of the male sex hormone testosterone, which
is important for masculinization and potency. Your son will be referred
to an endocrinologist to discuss the possibility of sperm banking
(please ask for a leaflet), or to discuss the implications on growth and
sexual maturation and long-term surveillance.
Thyroid gland
The thyroid gland (in the neck) can be affected by the treatment. It may
become underactive or overactive (very rarely) many years after
treatment has finished. It may occasionally become swollen or lumpy.
Your child will be monitored through regular blood tests and examinations.
If a dysfunction is detected or if your child experiences a swelling or
fatigue (symptoms of an underactive thyroid), or weight loss and
hyperactivity (symptoms of an overactive thyroid) it can easily be treated.
Breast development
In females who have had TBI the radiotherapy may well cause a
reduction in breast development. This should occur symmetrically
(both breasts will be underdeveloped). The exact effect depends on
the age of your child at treatment.
Growth
The combination of chemotherapy, steroids and radiation will affect
the growth of your child’s bones. There might be some
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underdevelopment of the spinal bones, with some loss of height.
However, it is unlikely to be severe unless your child is very young.
The pituitary gland (at the base of the brain) will also be irradiated.
This means that it may not produce enough growth hormone as your
child develops, particularly in puberty. Your child’s growth and
puberty will be monitored closely during and after treatment by
endocrinologists (doctors specialising in glands). Tests for growth
hormone deficiency will be performed. With early growth hormone
therapy, children should achieve their full height potential.
Early (precocious) puberty
The pituitary gland also controls puberty development. Radiotherapy
to the pituitary gland may make puberty start and finish earlier,
limiting the time available for growth. Endocrinologists (doctors
specialising in glands) will closely monitor your child during and after
treatment. They will deal with any issues that arise.
Schooling and learning
It is possible for chemotherapy, radiotherapy and long periods of
hospitalisation to affect learning ability, especially when your child is
very young (up to seven years of age). There may be a small but
significant decline in intelligence points (IQ) and weaknesses in
number skills, spelling and in the processing speed of acquiring new
information and skills. Your child will be closely assessed by clinical
psychologists and his/her teachers should be informed about the
potential problems that may occur. Most children are educated in
mainstream schools, but some may require one-to-one teaching to
address a special need and prevent a further decline in IQ. This will
require close liaison between yourselves as parents, the
psychologists, the hospital, the specialist nurse and the school. Most
children, however, achieve independent and fulfilled adult lives.
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Second malignancy
Very rarely, children who have received treatment for one particular
tumour may develop another type of tumour some years later.
Recently intensified chemotherapy treatment regimens to improve
cure rates may further increase this possibility. The radiotherapy
doctors will discuss this with you if it is relevant to your child. Other
factors, such as smoking and excess sun exposure, may also lead to
an increased cancer risk in later life. It is therefore very important that
any child who has received this treatment never smokes and always
takes precautions against excess sun exposure.
Support
This booklet deals with the physical aspects of your child’s treatment,
but their emotional wellbeing and that of the family is just as
important. Having treatment can be deeply distressing for your child
and the family. Within the radiotherapy department there will be
access and support from the radiotherapy play specialists, the
Macmillan information and support radiographer, the treatment
radiographers and the radiotherapy nurses. However, if your child
requires further medical or emotional support he/she can be referred
to a variety of health professionals specialising in children’s and
young people’s needs.
All the staff are here to make sure your child’s treatment goes as
smoothly as possible and to support the family through this difficult
period. We will try to help you with any questions or problems you
may have.
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Useful contact numbers
Local
Radiotherapy Play Specialists:
Laura Walter
Direct telephone: 020 3447 3792
Main switchboard:
0845 155 5000
ext 73792
bleep 2268
Alternative switchboard: 020 3456 7890
ext 73792
bleep 2268
Rhonda Alexander, Hannah Pollard
Direct telephone:
020 3447 3792
Main switchboard:
0845 155 5000
ext 73792
bleep 1138
Alternative switchboard: 020 3456 7890
ext 73792
bleep 1138
Macmillan Information and Support Radiographer:
Mark Williams
Direct telephone:
020 3447 3711
Main switchboard:
0845 155 5000
ext 73711
bleep 1458
Alternative switchboard: 020 3456 7890
ext 73711
bleep 1458
Email: [email protected]
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National:
The Lymphoma Association
Freephone:
0808 808 5555
Website:www.lymphoma.org.uk
Leuaemia CARE society
24 hour care line:
0800 169 6680
Email:[email protected]
Website:www.leukaemiacare.org.uk
Leukaemia Research Fund
Telephone:
020 7405 0101
Website:www.lrf.org.uk
African Caribbean Leukaemia Trust
Telephone:
020 8667 1122
Fax:020 8667 1626
Website:www.alct.org
CLIC Sargent
Freephone helpline:
0800 197 0068
(Monday to Friday 09:00 to 17:00)
Email:[email protected]
Website:www.clicsargent.org.uk
Click 4 (Information website for teenagers on cancer)
Website:www.click4tic.org.uk
Teenage Cancer Trust
Telephone:
020 7612 0370
Email:[email protected]
Website:www.teenagecancertrust.org
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Help Adolescents With Cancer
Telephone:
0161 688 6244
07718 801013 (Anytime)
Email:[email protected]
Website:www.hawc-co-uk.com
Gaps:line
Telephone:
0845 121 4277
(Monday to Sunday 08:00 to 22:00)
Email:[email protected]
Website:www.gaps.uk.com
Contact A Family
Telephone:
0808 808 3555
(Mondays 10:00 to 16:00 and 17:30 to 19:30
Tuesday to Friday 10:00 to 16:00)
Email:[email protected]
Website:www.cafamily.org.uk
Christian Lewis Trust Cancer Care for Children
(Family care services and helpline)
Telephone:
0179 248 0500
Email:[email protected]
Website:www.christianlewistrust.org
Youth Cancer Trust
Telephone:
0120 276 3591
(Monday to Friday 9:00 to 17:00)
Email:[email protected]
Website:www.yct.org.uk
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Teens Unite
Telephone:
0199 244 0091
Email:
Website:
[email protected]
teensunitefightingcancer.org
Childrens Cancer and Leukaemia Group (CCLG)
Telephone:
0116 249 4460
Email:[email protected]
Website:www.cclg.org.uk
National Alliance of Childhood Cancer Parent Organisations
Telephone:
0178 560 3763
Email:[email protected]
Website:www.naccpo.org
Macmillan Cancer Support
Cancerline Freephone:
0808 808 0000
(Monday to Friday 09:00 to 21:00)
Email:[email protected]
Website:www.macmillan.org.uk
Carers UK
Freephone:
0808 808 7777
(Wednesday to Thursday 10:00 to 12:00
and 14:00 to 16:00)
Email:[email protected]
Website:www.carersuk.org.
Cancer Help UK
Freephone Helpline:
0808 800 4040
(Monday to Friday 9:00 to 17:00)
Website:www.cancerhelp.org.uk
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Cancer Research UK
Website:www.cancerresearchuk.org
National Library for Health
(covers all aspects of health, illness and treatments)
Website:www.library.nhs.uk
NHS Direct
Telephone: 0845 4647 (available 24 hours)
Website: www.nhsdirect.nhs.uk
Patient UK
(comprehensive, free and up-to-date health information)
Website:www.patient.co.uk
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Space for notes and questions
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First published: October 2005
Last review date:
June 2013
Next review date: June 2015
Leaflet code: UCLH/S&C/CD/PAEDRT/TOTALBODY/1
© University College London Hospitals NHS Foundation Trust
Created by Medical Illustration RNTNEH 020 3456 5103 Unique Code: 28855