University College Hospital. Having Total Body Irradiation (TBI) Radiotherapy Department Paediatric information series

Transcription

1 University College Hospital Having Total Body Irradiation (TBI) Radiotherapy Department Paediatric information series 9

2 2 If you need a large print, audio or translated copy of the document, please contact us on: (Direct line) ext 73711/bleep ext 73711/bleep 1458 We will try our best to meet your needs.

3 3 Contents Introduction 5 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 Support 16 Useful contact numbers 17 Space for notes and questions 22

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5 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.

6 6 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 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.

7 7 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.

8 8 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

9 9 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

10 10 (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

11 11 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.

12 12 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

13 13 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.

14 14 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

15 15 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.

16 16 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.

17 17 Useful contact numbers Local Radiotherapy Play Specialists: Laura Walter Direct telephone: Main switchboard: ext bleep 2268 Alternative switchboard: ext bleep 2268 Rhonda Alexander, Hannah Pollard Direct telephone: Main switchboard: ext bleep 1138 Alternative switchboard: ext bleep 1138 Macmillan Information and Support Radiographer: Mark Williams Direct telephone: Main switchboard: ext bleep 1458 Alternative switchboard: ext bleep 1458

18 18 National: The Lymphoma Association Freephone: Leuaemia CARE society 24 hour care line: Leukaemia Research Fund Telephone: African Caribbean Leukaemia Trust Telephone: Fax: CLIC Sargent Freephone helpline: (Monday to Friday 09:00 to 17:00) Click 4 (Information website for teenagers on cancer) Teenage Cancer Trust Telephone: tct@teencancertrust.org

19 19 Help Adolescents With Cancer Telephone: (Anytime) Gaps:line Telephone: (Monday to Sunday 08:00 to 22:00) Contact A Family Telephone: (Mondays 10:00 to 16:00 and 17:30 to 19:30 Tuesday to Friday 10:00 to 16:00) info@cafamily.org.uk Christian Lewis Trust Cancer Care for Children (Family care services and helpline) Telephone: enquiries@christianlewistrust.org Youth Cancer Trust Telephone: (Monday to Friday 9:00 to 17:00) admin@yct.org.uk

20 20 Teens Unite Telephone: teensunitefightingcancer.org Childrens Cancer and Leukaemia Group (CCLG) Telephone: National Alliance of Childhood Cancer Parent Organisations Telephone: Macmillan Cancer Support Cancerline Freephone: (Monday to Friday 09:00 to 21:00) Carers UK Freephone: (Wednesday to Thursday 10:00 to 12:00 and 14:00 to 16:00) Cancer Help UK Freephone Helpline: (Monday to Friday 9:00 to 17:00)

21 21 Cancer Research UK National Library for Health (covers all aspects of health, illness and treatments) NHS Direct Telephone: (available 24 hours) Patient UK (comprehensive, free and up-to-date health information)

22 22 Space for notes and questions

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24 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 Unique Code: 28855