Information for patients receiving weekly Cetuximab and radiotherapy treatment to the head and neck area Introduction This booklet aims to guide you through your treatment and provide some advice on how you can help to look after yourself during treatment and promote recovery. It is important to appreciate that individuals can vary considerably in their sensitivity to radiotherapy and the treatment can be very different for everybody. Treatment can often be difficult, causing many side effects. These will be explained to you and it is important to remember that the doctors, radiographers and nurses looking after you will be able to help with many problems or concerns. Please do not hesitate to ask or phone for advice. Radiotherapy Radiotherapy is a treatment used to destroy cancer cells using X- rays. Although the rays are stronger, and the radiotherapy machines are larger than those used for taking X- ray pictures, you won t feel anything when the machine is switched on. The amount of treatment required is carefully planned (See Radiotherapy Planning) and your oncology doctor will tell you how many treatments you will need. This can take from 3 to 7 weeks. The treatment is given daily, Monday to Friday and lasts approximately 10 minutes. Once you have started treatment it is very important that you attend every day as any unplanned gaps can affect the outcome of treatment. Radiotherapy works by damaging cells in the treated area. Cancer cells are destroyed and although normal cells are also affected they can repair themselves more effectively. The damage to normal cells is usually temporary, but is the reason that radiotherapy has some unwanted side effects. (See Side Effects) Cetuximab is a type of therapy known as a monoclonal antibody and works in a different way from chemotherapy drugs. Cetuximab can fight cancer cells by blocking the factors that encourage the growth of cancer cells. It has been shown that patients receiving cetuximab along with radiotherapy do better than those receiving radiotherapy by itself.
Your treatment will consist of an initial starting dose of Cetuximab a week before beginning radiotherapy followed by further doses on the first day of your radiotherapy and at the beginning of every week of your radiotherapy. This will mean a total of 8 doses, a starting dose and 7 weekly doses during radiotherapy. Cetuximab is given as an infusion through a drip. It is given as a day case in the day chemotherapy unit. It takes approximately 3 1/2 hours to give the first dose, and two hours to give the subsequent doses. Like all drugs is can have side effects (See Side Effects) Before Starting Treatment Dentist It is advisable to see your dentist before starting radiotherapy treatment for any dental work to be carried out. During and after treatment dental work is often difficult. Stop Smoking Smoking during treatment will make the side effects of treatment worse, and will delay the healing process. Please ask if you require help and support with giving up. Reduce Alcohol Intake During treatment you should stop taking alcohol as this can irritate the lining of the mouth or throat. Please ask if you need help and support with this. Mouth Care It is advisable to buy bicarbonate of soda from a supermarket to use as a mouthwash. This is essential during your treatment. (See Side Effects) Radiotherapy Treatment Planning Radiotherapy needs to be planned for each individual and there are several planning sessions needed before treatment can start. For all appointments please report to the reception desk in The Edinburgh Cancer Centre. Mould Room The first part of the radiotherapy planning involves a visit to the Mould Room. Most patients having radiotherapy to the head and neck region will require a plastic mask (also called a beam direction shell.) to be made which is worn during treatment. This involves using soft plastic material, which is moulded to the shape of your face and neck. This mask helps you stay in exactly the correct position for your treatment about 10 minutes each day. During your treatment it may be necessary to have a new mask fitted. This will be explained to you.
The mould room technicians will make the mask. They will explain the whole procedure to you before they begin. It will take about 30mins and is completely painless. CT Scanning (Used to plan treatment) For most people treatment planning continues with a visit to the CT planning scanner. This visit takes approximately 30-40 minutes and you will be required to wear the mask/shell during this. The machine is very similar to the scan you may have had to diagnose your cancer, but it has sophisticated computer software to allow specialized radiotherapy planning to take place. You may need to have an injection of contrast dye during this time. Your radiographer will explain this to you. Simulator The final part of your treatment planning takes place in the Simulator. The Simulator is an X-ray machine used to check your treatment plan. The simulator radiographers will position you and fit your mask. The radiographers will draw the treatment positioning marks on your mask. All of this information will be used to produce a treatment plan which is tailor-made for you. The radiographer will explain this procedure to you. It takes about 30 minutes and is painless. You will NOT be given any treatment in the simulator. You will be having 34 treatments altogether. This takes nearly 7 weeks. Generally your treatment will be given daily but not at weekends. Once the simulator planning is complete, you will be taken to your treatment machine and introduced to the radiographers who will treat you daily. If you are to come for treatment as an out-patient an appointment time will be arranged for you. (The simulator radiographers will give you written information with the number of your treatment machine and the radiographer s telephone number.) During your treatment it may be necessary to visit the simulator again for some fine adjustment. This is routine and your doctor or radiographer will explain this to you. Radiotherapy Please report each day directly to your treatment machine or to the main reception desk if you are unsure of the
way. If you are staying in the hospital a porter will bring you directly to the treatment machine. Your radiotherapy is quicker than your treatment planning procedures. The radiographers will position you carefully, fit your mask and align the treatment machine to the correct treatment areas or fields. You will probably be treated with more than one field each day. Although the radiographers will be with you during positioning for treatment, they must leave the room whilst the radiotherapy is given. For each treatment field this will be approximately half a minute. The radiographers will explain what they are doing, how the treatment works and how it may affect you. If you have any questions or worries about your treatment or planning please do not hesitate to ask. In both the simulator suite and treatment machines we have c.d. players. If you like to listen to music or feel that it may help you relax please feel free to bring along your favourite c.ds. During the course of your treatment you will be have weekly visits to the day treatment room for your Cetuximab infusion and you will also be seen routinely once a week by one of the radiotherapy treatment review nurses or doctors in your team. This is to see how the treatment is progressing and gives you the opportunity to discuss any problems or questions that may arise. Some patients may require an additional course of treatment to treat the back of the neck. This is called electron treatment and can last 10 14 days. This runs alongside your planned radiotherapy course but requires you to have treatment on a different machine as well as your normal one. On the first day the planning can take some time as the doctor, physicist and radiographer arrange your treatment. You will wear your mask as before and again this treatment is quick and painless. Do not hesitate to ask for advice from the radiographers or nurses at any time. Side Effects of Radiotherapy Side effects of radiotherapy occur due to damage to the cells in the area treated. At first you should not notice any difference due to the treatment however, as your radiotherapy progresses you will begin to feel the side effects, usually at about the 3 rd week of treatment. These side effects will get progressively worse until the end of the treatment and will continue for several weeks afterwards until you slowly start to heal and feel better.
As radiotherapy affects people in different ways, it is difficult to predict exactly how you will react to your treatment and the doctor, nurse or radiographer will explain the side effects you may experience before your treatment begins. Skin Reactions The skin in the treatment area receives a dose of radiotherapy. It will become pink and by the end of treatment can be red, sore and itchy (similar to sunburn). The skin may begin to peel and there may be some leakage. This usually settles a few weeks after the treatment has finished. To minimize these symptoms; wash the area very gently with lukewarm water and a very mild soap such as Baby or Simple soap and pat dry gently with a soft towel. men should use an electric shaver. it is best to keep the skin exposed to the air as much as possible. wear loose fitting cotton clothes, which do not rub the skin. the doctors, nurses or radiographers can give you a moisturizing cream (Aqueous or Hydrocortisone cream) if your skin is dry or itchy, to use during and after treatment. Do not use any commercial products. Avoid perfume, aftershave, creams and cosmetics and avoid exposing the skin to strong sunlight. Painful mouth/throat The cells lining the mouth and throat are sensitive to radiation and you will feel sore about 3 or 4 weeks after starting radiotherapy. You will be prescribed mild painkillers initially to help but you will need strong painkillers by the end of the treatment. If your throat is sore you may be prescribed Mucaine (a white liquid) to swallow, which has an anaesthetic effect. Many painkillers can cause constipation and therefore you may be prescribed a laxative as well. Please let your radiographer, nurse or doctor know if you are sore as painkillers can be prescribed to help this. Mouth Care During treatment the lining of the mouth and throat become inflamed and sore and it is essential that you keep your mouth as clean as possible. A visit to a dentist prior to your treatment is essential as it is difficult to have dental work done during or after treatment.
The radiotherapy may also make it easier for infections, such as thrush, to develop in the mouth and throat and your doctor or nurse will examine your mouth regularly throughout treatment. How to care for your mouth Brush your teeth very gently 4 times a day (after meals and at night). Use a soft toothbrush and fluoride toothpaste. If you have dentures remove them at night and soak in suitable cleansing agent: e.g. Sterident or a mild Milton solution. Rinse well after soaking. Mouthwash Add 1 level teaspoon of Sodium Bicarbonate to 1 pint of water, cover and use throughout the day. Rinse your mouth and gargle if you can at least 4 times a day after meals. Do not swallow. After 3 weeks of treatment you should increase this to 6 8 times a day. Do not use more than 1 level teaspoon to 1 pint of water (as this can burn the lining of the mouth) Do not use commercial mouthwashes. It can take several weeks for the lining of the mouth and throat to heal. This timing may vary, as everyone is different. Dry Mouth You will find your mouth may become very dry during your treatment. Drink plenty of fluids and carry a small bottle of water with you when you are away from home. It is also advisable to keep water by your bedside. The use of sugar free chewing gum or saliva replacement gel may help. Please ask your doctor or nurse for advice on this. For some people a dry mouth may be a permanent effect of radiotherapy and this will be discussed with you. Mucous/ Saliva The radiotherapy treatment often causes a change in saliva making it thick. It also results in mucous developing in the mouth and throat, which can be unpleasant. The mucous (secretions) should be a white or cream colour. If you notice that the mucous has changed colour please let your doctor or nurse know. Small streaks of blood in your spit is quite common but if it seems a lot, please ask for some advice. If you are able
to gargle with your sodium bicarbonate mouthwash this can sometimes help. Side Effects of Cetuximab The main side effect of this therapy is a skin rash that can look a bit like acne but varies in its severity between patients. It can cause dryness of the skin and itchiness and if it is very troublesome we can miss out a dose until it settles. You may notice some splitting of your nails and dry or itchy eyes. Some patients have reported diarrhoea, and we can give you something to prevent this becoming troublesome. Occasionally patients feel nauseated. We can give you advice on how to cope with these side effects so please do not hesitate to ask for help. A few patients have experienced an allergic reaction to Cetuximab, so you should report immediately if you feel feverish, hot or wheezy when you get your first dose. To prevent this we will give you an antihistamine with your infusions. Very rarely patients can develop inflammation in the lungs in which case we would stop the Cetuximab. If you feel increasingly breathless, let us know and we will arrange a chest x- ray. Coping with the side effects of your treatment Eating and Drinking If you are experiencing problems with eating or drinking before the start of treatment this is likely to be due to the position or size of your cancer. You will also experience some difficulty during and after radiotherapy treatment, depending on the area being treated. This can be due to the side effects of radiotherapy e.g. pain, inflammation, muscle stiffness and changes in taste and appetite. If this is the case you should be referred to a Dietitian and a Speech and Language Therapist. The Speech and Language Therapist will Assess how well you can swallow and identify if there are any problems Provide advice regarding the easiest and safest types of food for you to manage Provide exercises to help you with swallowing and eating You must be referred for a swallow assessment if find that food is sticking in your throat or you cough, choke or become breathless when eating and drinking.
The Dietitian will: Assess your diet and appetite Identify any issues which may be reducing your food intake Monitor your weight Provide advice on how to improve your diet to make sure you are getting enough nutrition Nutrition It is important that you get enough nutrition to maintain your energy levels during treatment and to allow your body to heal. A dietitian will review your diet and monitor your weight weekly during treatment. In general, soft/liquidized foods are easier to manage e.g. porridge, soups, and puddings. Eat little and often, and it is important to take at least 2 litres (3 ½ pints) of fluid a day. During treatment it is best to avoid tart citrus fruits/drinks, fizzy drinks and hot, spicy foods as these may sting your mouth and throat. In order to help you get enough fluids, nourishment and medication it may be necessary to pass a thin tube via your nose into your stomach, or directly into your stomach. Your doctor, nurse or dietitian will give you more information about this. It may be necessary to put this tube in prior to your treatment starting. Tiredness You may feel tired during your treatment. It is important to take time to rest if you need to and this tiredness, for some, can last for months following the end of radiotherapy. Voice Changes You may notice that your voice becomes hoarse during treatment if your throat is being treated. This usually returns a few weeks after treatment. Alcohol & Tobacco Cigarettes, cigars and pipe tobacco are all extremely harmful and will make symptoms from the treatment much worse. It is therefore essential that during treatment you DO NOT SMOKE. If you need help to stop smoking you can buy nicotine replacement products such as patches and gum from the chemist or your GP may prescribe these for you. Ask
your Health Centre if they have a smoking cessation nurse/group. Drinking spirits is strongly discouraged however small amounts of beer, stout or wine are acceptable. During your radiotherapy treatment you will be seen once a week by your doctor and nurse to see how you are getting on. However please do not hesitate to ask the radiographer or nurse if you have any questions out with this time. What happens when the treatment is finished? Following completion of radiotherapy and Cetuximab, the side effects continue for some weeks before beginning to resolve and it can take several months before you feel better. As everyone is different it is difficult to say exactly how long this will be. You may need to return weekly to see the doctor or nurse until the side effects settle down and you can contact your Clinical Nurse Specialist if you need further information or help. What can I do to help at this stage? Continue to take plenty of fluids and use the mouthwashes regularly. You may need to continue with the painkillers until the reaction settles. You will probably feel more comfortable without your dentures for a while. If your skin is sore and painful in the treated area the doctors and nurses will supply you with creams to use at home. You should not put anything else on the skin until the skin heals. Men should continue to dry shave with an electric shaver until the skin returns to normal, which will take about 4-8 weeks. Strong sunshine and strong winds should be avoided wear a hat or a scarf at this stage. Advice for the future Dryness in the mouth can make you more at risk of dental problems and good dental care is important. If you have teeth continue to use a toothpaste containing fluoride or ask your chemist for a fluoride mouthwash. You should see your dentist/ dental hygienist regularly, and you must tell them that you have had radiotherapy.
If you need a tooth extraction at any time in the future please seek the advice of the doctors in the clinic first. Sometimes this is best done in hospital to ensure proper healing of the gums. Occasionally the shape of your gums can change after radiotherapy and your dentures do not fit properly. This will almost certainly be the case if you have had an operation in your mouth. Never wear badly fitting dentures. They can cause ulcers in the mouth, which can take a long time to heal. Please ask for advice on when new dentures can be made. After a month or so, the radiotherapy reaction should have started to settle down, but some side effects can last a bit longer. If you were very hoarse before your treatment you may find that your voice does not return completely to normal. Dryness in the mouth or throat can be troublesome it may help to carry a small bottle of water with you to sip, or sweets to suck on. Emotions Most people find that being told they have cancer and having a difficult course of treatment affects their mood in many different ways. If you would like to discuss how you are feeling or would like some help with this please do not hesitate to say. Follow Up You will be seen regularly in an outpatient clinic. This may be weekly until the side effects have stabilized. Then you will return to the Combined Clinic at the Edinburgh Cancer Centre where you were first seen. This will be about once a month to begin with. The doctors will want to know how you have been getting on, what symptoms, if any, you have noticed and whether there is anything that concerns you. Please do not hesitate to say. The doctors will also examine your mouth or throat and will feel your neck at each visit. If any problems arise between appointments call your Clinical Nurse Specialist or make an appointment with your GP, who will have had a letter from the hospital and will have the details of your treatment. If necessary, an earlier appointment can be made for you. Contact Details Clinical Nurse Specialists Fiona Haston The Edinburgh Cancer Centre 0131 537 1107
Julie Philp Fife 01383 674 063 Lynn Coltart Dumfries & Galloway 01387 246 246