Diet and pancreatic cancer This fact sheet is for anyone diagnosed with pancreatic cancer who would like to find out more about the impact of pancreatic cancer on diet and nutrition. It contains information on managing dietary related symptoms that you may experience because of a diagnosis of pancreatic cancer or due to the side effects of treatment. It also signposts to sources of dietary information and support. How does pancreatic cancer affect diet and nutrition? The pancreas plays an important role in the digestion of food. It produces enzymes and hormones that help to break down food and regulate blood sugar. Pancreatic cancer can affect the functioning of the pancreas and its ability to produce these enzymes and hormones. This has an impact on digestion and the absorption of nutrients from food. Surgery for pancreatic cancer where all or part of the pancreas is removed will also affect the functioning of the pancreas. It is common for people diagnosed with pancreatic cancer to have diet related symptoms. These can include changes in appetite, smell and taste, weight loss, nausea and vomiting, a sore mouth and changes to bowel habits. Some people may also develop diabetes. Lipase, a pancreatic enzyme, breaks down fat in food. If the body does not produce enough lipase it can lead to the development of steatorrhoea which is caused by the presence of undigested fat in stools. It is characterised by clay coloured stools, which can be oily in appearance, float, be difficult to flush, and have an offensive smell. It can lead to weight loss because nutrients from food are not absorbed properly. Some people with pancreatic cancer will develop jaundice. This can also affect diet as it can cause loss of appetite, taste changes, vomiting and nausea. These symptoms usually resolve once the jaundice is treated. What dietary support is available? The dietitian is a key member of your multi-disciplinary care team at the hospital. You may require support from a dietitian as part of your care, if so they will assess your dietary related needs. Dietitians can offer expert advice to help you manage dietary symptoms related to the pancreatic cancer or your treatment. They will give advice on getting the nutrition you need and provide tips on boosting your calorie intake. In particular they may suggest the use of pancreatic enzyme supplements and nutritional supplements. Finding ways to manage your dietary related symptoms will help your overall wellbeing. If you have not seen a dietitian you should ask your care team or GP to refer you to one if you are experiencing problems with your nutrition. 1 Pancreatic Cancer UK 2012 For specialist information and support on pancreatic cancer contact our Support Line: Telephone 020 3535 7099 or email [email protected] What are pancreatic enzyme supplements and how can they help? Pancreatic cancer or the removal of all or part of the pancreas through surgery can affect the ability of the pancreas to produce enzymes which help to break down fat, protein and carbohydrate. Lipase is responsible for the digestion of fat, protease is responsible for the digestion of proteins and amylase is responsible for the digestion of carbohydrate. If you are experiencing weight loss, steatorrhoea (see above), diarrhoea, abdominal discomfort, bloating or flatulence it can be a sign that you are not digesting and absorbing nutrients properly. These symptoms can often be controlled by the use of pancreatic enzyme supplements which help to break down food. There are different types of enzyme supplement available; Creon is the most commonly used type in the UK. Other types include Pancrease, Nutrizym, and Pancrex. Your consultant will usually prescribe the pancreatic enzyme supplements but your dietitian can also provide advice on starting to use these enzymes or altering the dose. The dosage prescribed will vary between individuals due to differences in pancreatic function. You may also be advised to alter the amount you take based on the size of the meal or whether it contains a lot of fat. Larger meals and more fatty foods need more enzymes to be digested and you should alter your pancreatic enzyme dose accordingly. Your dietitian can provide advice on how to work out the best dosage of enzymes for you. When you first start taking the enzymes you may need to alter the amount you take until you find out what works best. Signs that you are taking enough include stools returning to normal, weight gain, and less gas/wind. Some people find they have to restrict the amount of fat in their diet despite taking the tablets. If you continue to have dietary related symptoms while using the enzyme supplements or are losing weight you should consult your dietitian. How should I take the enzyme supplements? It is important to understand how to take the supplements to make sure they work well. Pancreatic enzyme supplements come in a capsule form or as granules. They should be swallowed with water whenever you have a meal or snack and you should take the supplements immediately before you eat. For larger meals you can take half of the capsules just before you eat and half during the meal. It is best not to drink a whole glass of water with the tablets as this will flush them through your system too fast and it can make you feel full quicker. Fatty foods may require more enzymes, for example fried foods, curries, doughnuts, pastries, puddings, oily dressings and sauces. You should not take the supplements without food as they will not have a helpful effect and could be harmful. The capsules should not be chewed or crushed as this will destroy the enzymes. Ideally the capsules should be swallowed whole. However, if you find this difficult you can empty 2 Pancreatic Cancer UK 2012 For specialist information and support on pancreatic cancer contact our Support Line: Telephone 020 3535 7099 or email [email protected] the capsules and take the microspheres they contain with a teaspoon of jam, but again you must not chew. Some people experience bloating when taking an enzyme supplement. It can help to try a different brand of the enzyme as the manufacturers use different coatings or you can try a different type of enzyme. If you are experiencing problems seek advice from your dietitian, healthcare team or GP. Nutritional supplements If you have lost weight, have a poor appetite or can only eat small amounts of food you may find it helpful to take a nutritional supplement. These supplements can help make sure you are getting enough calories, protein, vitamins and minerals. They are available on prescription through your GP, hospital or dietitian. There are different types of nutritional supplement products available including milk-based, juicetasting, powder, yogurt style and soups. You may need to try different products until you find one you prefer or tolerate better. Some people find they prefer a savoury to a sweet product. There are four main companies that make nutritional supplements. They are: • Abbott Nutrition (Ensure® range e.g Ensure®Plus milkshake style, Ensure Plus Juice). • Nutricia (Forti range e.g. Fortisip, Fortijuice). • Fresenius (Fresubin range e.g. Fresubin Energy Drink). • Nestlé (Resource range e.g. Resource Shake, Complan, Build-up). Macmillan Cancer Support has more detailed information on the products produced by these companies on their website www.macmillan.org.uk. You may want to try products from different companies to find one you like. The company websites also contain tips on using the products in recipes. If you are finding it hard to eat or drink you may find it easier to take a nutritional supplement drink as small ‘shots’ (50ml doses) throughout the day. If you are diabetic you should be aware that these supplements can be high in sugar (in particular glucose). This does not mean you cannot use them as it is important to get enough calories but you should seek advice from your dietitian before taking them and you may need to monitor your blood sugar closely. The rest of this publication looks at specific areas related to diet and pancreatic cancer including: • Diet and the Whipple’s procedure • Diet and inoperable pancreatic cancer • Diet and chemotherapy • The emotional impact of dietary related problems • Diet tips 3 Pancreatic Cancer UK 2012 For specialist information and support on pancreatic cancer contact our Support Line: Telephone 020 3535 7099 or email [email protected] Diet and the Whipple’s procedure How will my diet be affected by the Whipple’s procedure? Before surgery You may have your nutritional status assessed before surgery and receive dietary support. If you have lost weight and there is time before surgery takes place your dietitian may advise eating a ‘build up’ diet using regular food. This diet will aim to increase the energy, protein, vitamins and minerals in your diet. While eating this diet you will need to monitor your stools because an increase in high fat food could make steatorrhoea (fatty stools) worse which can reduce the absorption of nutrients. Tips for a build up diet: • Try to eat 3 small meals and 3 snacks a day. • Eat more protein rich foods (e.g. meat, fish, milk, cheese, eggs, beans and lentils, nuts, yogurts). It is important to include at least one rich source of protein at each of your meals. • If you can only eat small amounts enrich your food. For example enrich milk by taking a pint of full cream milk and mixing in 3-4 tablespoons of dried milk powder. Then use this enriched milk instead of ordinary milk in tea and coffee, to add to cereals or milk based puddings, to add to soup and to make sauces. • Try to drink 6-8 cups of fluid a day but avoid drinking at mealtimes as this can make you feel full. Have drinks such as milk, fruit smoothies, hot chocolate and fruit juice. • Have some fruit and vegetables each day. After surgery Immediately after surgery you will be ‘nil by mouth’ as the gut needs to rest. You will initially be fed through a tube either directly into the stomach or bowel (enteral feeding) or into a vein (parental feeding). You will usually be fed in this way for around 5-7 days, although it can be longer if needed. After this period you will slowly start to take liquid and food orally again. You will begin by drinking clear fluids such as water, black tea, black coffee and squashes. You can then move on to fluids in any form including fruit juice, milk and nutritional supplements. Next you can try a soft or light diet which involves eating softer foods which you should chew well. Once you are managing this diet you can gradually build up your intake of normal food. You are likely to feel full more quickly than before because of a reduced stomach capacity. It will help to eat little and often to make sure you get the calories and protein you need. Try having three small meals and three snacks a day. 4 Pancreatic Cancer UK 2012 For specialist information and support on pancreatic cancer contact our Support Line: Telephone 020 3535 7099 or email [email protected] You may receive an assessment from a dietitian in the hospital once you start taking food orally again. They can provide advice on managing any symptoms from the surgery and gaining weight if needed. They will also give tips on helping you improve your food intake in a form you can manage. After the Whipple’s procedure most people find that they have a small appetite and cannot manage big portions. This may last for several months or be a long term effect of the surgery. You may also experience heartburn and steatorrhoea (greasy stools). Having all or part of the pancreas removed during surgery will affect the functioning of the pancreas and your ability to digest food. Your dietitian or surgeon may advise you to take pancreatic enzyme supplements to help you absorb the nutrients you need from food. They may also advise you to take nutritional supplements to help you gain weight. It is also very common to find favourite foods do not taste the same after surgery. Taste can take some weeks to return to normal. Often citrus flavours such as grapefruit or pineapple, or perhaps strong flavoured crisps or snacks can stimulate taste buds. After surgery some people find they have difficulty with some foods and you may have to experiment to find what you can tolerate and enjoy eating. It is possible that you will have lost weight both before and after surgery, and it may take 3-6 months for you to begin to gain weight, in some cases up to 12 months. This is a normal effect of surgery and the changes to your eating pattern that have occurred. You may find that your weight stabilises at a certain point and you do not gain any further weight. You should monitor your weight and request a review by a dietitian for advice on how to increase your weight if you are having difficulty gaining weight. Six months after surgery the majority of people will be able to maintain weight and experience minimal gastrointestinal symptoms. If you are having chemotherapy following the Whipple’s procedure you should seek advice from a dietitian to help make sure any nutritional problems will not delay the start of chemotherapy treatment. Diabetes and blood sugar The removal all or part of your pancreas, during surgery can lead to the development of diabetes. This is because the cells that produce insulin have been removed. You may need to start having insulin injections or taking tablets to regulate your blood sugar. You may also need to make changes to your diet to help manage the diabetes. Your diabetes will need to be managed in the context of the pancreatic cancer. For example if you 5 Pancreatic Cancer UK 2012 For specialist information and support on pancreatic cancer contact our Support Line: Telephone 020 3535 7099 or email [email protected] have lost weight it may be a priority to stabilise your weight using a build-up diet and monitor the diabetes around this. This will help you to recover from surgery, preserve your physical function and enable you to carry out normal daily activity. You should seek advice from a dietitian or diabetes nurse for advice on managing your diabetes. After a total pancreatectomy close monitoring of the diabetes will be important. It is important to be aware that some nutritional supplements are high in glucose and you should seek advice before taking these if you are diabetic. You can find more information on managing diabetes from Diabetes UK (www.diabetes.org.uk). They have information on different types of diabetes, eating well and recipes. Diet and inoperable pancreatic cancer What is the dietary advice for inoperable pancreatic cancer? There is some research evidence that maintaining a stable weight can help improve survival and wellbeing in people with inoperable pancreatic cancer. If you have been diagnosed with inoperable pancreatic cancer and are having difficulty maintaining weight or eating you can request an assessment with a dietitian. At this assessment you can discuss any dietary related symptoms you are experiencing as a result of the pancreatic cancer or treatment. The dietitian can provide advice to help you manage these symptoms and maintain a good diet. If you have lost weight or developed steatorrhoea (clay coloured oily stools, which are difficult to flush, and have an offensive smell) the functioning of your pancreas may have been affected by the cancer. In particular you may have a blocked or partially blocked pancreatic duct. You may find it helpful to take pancreatic enzyme supplements to aid your digestion and help you absorb nutrients from food. You can ask your dietitian, healthcare team or GP about these supplements (see above for more information). If you are finding it difficult to eat, try to get the calories and protein you need in a form that you are able to manage. See our diet tips information below for tips on a coping with a small appetite. If you have lost your appetite or lost weight the dietitian or your specialist nurse may suggest you try taking a nutritional supplement. Your healthcare team may also suggest the use of appetite stimulants such as steroids e.g. Dexamethasone or hormonal therapy e.g. megaestrol acetate. 6 Pancreatic Cancer UK 2012 For specialist information and support on pancreatic cancer contact our Support Line: Telephone 020 3535 7099 or email [email protected] What is cancer cachexia? Cancer cachexia is common in people with pancreatic cancer. It is a condition that leads to dramatic weight loss, malnutrition, muscle wasting and fatigue. It is caused by metabolic changes that cannot be corrected through eating extra calories. Once the weight has been lost it can be very difficult to put it back on. Research has suggested that in some people the use of Eicosapentaenoic acid supplements (EPA) can have an effect on weight, appetite and quality of life. Ask your dietitian or GP about these supplements if you have experienced significant weight loss. Diet and chemotherapy Will chemotherapy have an impact on my diet? Eating well can help you to cope with and tolerate chemotherapy treatment. However, chemotherapy can affect the ability to eat and cause a number of dietary related symptoms. Common side effects of chemotherapy include nausea, vomiting, sore mouth, loss of appetite, taste changes, diarrhoea, and constipation. If you are experiencing any dietary related problems from chemotherapy you can ask to speak to a dietitian. Many people undergoing chemotherapy report some form of taste change. Typical comments include “everything tastes like cardboard”, “my mouth feels like there is cotton wool in it”, “I have a metallic taste in my mouth”, “everything tastes the same”, “food has lost its flavour and tastes bland” and “I can’t stand my favourite meal/drink anymore”. Taste changes are reversible, usually once chemotherapy is over the taste buds recover and people begin to enjoy their food again. If you are experiencing taste changes a good tip is to use spices and herbs in cooking. This can help you cope with the blandness, or a metallic taste. Try to use food with different textures, to encourage chewing and saliva production. Vary your diet as much as possible and try adding sweet and sour flavourings to meat and vegetable dishes. For tips on managing other side effects from chemotherapy including nausea and vomiting, a dry mouth and taste changes see our diet tips information below. Chemo- radiotherapy Some patients with pancreatic cancer may be offered chemo-radiotherapy. This treatment can cause diarrhoea, stomatitis (inflammation of the mouth), nausea and vomiting and tiredness. Maintaining a good diet may help you to tolerate the treatment. You may want to try using nutritional supplements (see above) to boost the calories you are getting. 7 Pancreatic Cancer UK 2012 For specialist information and support on pancreatic cancer contact our Support Line: Telephone 020 3535 7099 or email [email protected] The emotional impact of dietary related problems Diet related symptoms can have an emotional impact on people with pancreatic cancer and their family or carers. If you are experiencing dietary related symptoms you may become anxious about food or eating, particularly if you are coping with diarrhoea. Weight loss and the resulting change of appearance can cause anxiety and concern. Family members, carers or friends often want to make sure that the person affected by pancreatic cancer is eating well. They may spend a lot of time preparing favourite foods and find it difficult when these are not eaten, especially as they want to help. It can be helpful for them to know that the palate can change from treatment and sometimes people can find it hard to face food or ‘go off’ particular foods. The smell of food being cooked can also make people feel nauseous. Nutritional needs can also change if someone has become less active which means they do not need to eat as much and will have a smaller appetite. Many people with pancreatic cancer will not be able to eat as much as before. The nature of pancreatic cancer and the treatment given can mean that in some people weight gain is not realistic. However, good nutrition is important for helping people to tolerate treatment and maintain a good quality of life. Questions Is there a dietitian in my multidisciplinary team? Can I be referred to a dietitian? How soon can I see a dietitian? Would pancreatic enzyme supplements help relieve my dietary symptoms? Should I be taking nutritional supplements? Who should I ask about help with managing diabetes? 8 Pancreatic Cancer UK 2012 For specialist information and support on pancreatic cancer contact our Support Line: Telephone 020 3535 7099 or email [email protected] Diet Tips If you are having difficulty eating or maintaining your weight the key is to eat little and often. Small, nutritious snacks are often easier to manage than a large meal and small portions can be more inviting. Below are diet tips for different diet related symptoms that you may experience as a result of pancreatic cancer or treatment: Tips for a small appetite • Try to eat 3 small meals and 3 snacks a day. • Use at least one pint of full cream milk each day. • Have 6-8 cups of fluid each day (including tea, coffee, fruit juice, squash, soup and milky drinks). • Have a pudding once or twice a day e.g. yoghurt, trifle, ice cream, cake, sponge pudding, fruit pie, ready prepared desserts. • Enrich your food to increase calories: - To make enriched milk add 2-4 tablespoons of milk powder to a pint of full cream milk. You can then use this in place of ordinary milk to make tea, coffee, packet soups, sauces, puddings or on breakfast cereal. - To soup add grated cheese, cream, dried milk powder or pasta. - To milk based sauces add cream, evaporated milk or cheese. - To puddings add cream, custard, evaporated/condensed milk, ice cream, honey, dried fruit. - To potatoes and vegetables add grated cheese, cream, margarine/butter, salad cream. • Cakes, pastries, biscuits, chocolate and crisps can provide extra energy when eaten with meals or as a snack. • Snacks can include toasted crumpets/teacakes, yoghurt, fruit, fruit cake and malt loaf. • Have some between meal drinks such as malted drinks, drinking chocolate, instant soup, Bovril, Marmite, milk shakes or fruit smoothies. • If you are finding cooking difficult or tiring you can use convenience foods / microwave meals / take away meals / tinned or frozen meals. Tips for coping with nausea and vomiting • Have small frequent meals. • Nausea is often worse when there is nothing to line the stomach, even eating a little dry toast may help. • Try eating plain foods e.g. toast, bread and biscuits. • Avoid strong smelling foods. 9 Pancreatic Cancer UK 2012 For specialist information and support on pancreatic cancer contact our Support Line: Telephone 020 3535 7099 or email [email protected] Try eating cold foods which have less smell than cooked food. Try sipping cold fizzy drinks between meals - it may help to let them go flat. Avoid fried or greasy food. Try salty foods e.g. crisps and salted nuts. Try food or drink containing ginger e.g. ginger ale, ginger biscuits. Eat meals slowly and sit upright for an hour after meals. Remember to have fluids to avoid dehydration. The thought of food or the smell of food cooking can add to nausea. If this is the case try using ready meals or order food in. • Lavender can help, try a few drops on a pillow. • • • • • • • • There are also several anti-sickness medications available on the market, ask your health care team about these. If one type of medication doesn’t work it can help to try a different type or a combination of drugs. These medicines may also be given via a continuous pump through a small needle into your fatty layer under the skin. Tips for coping with dry mouth • • • • • • • • Sip drinks frequently, try keeping a bottle of water handy to sip on. Use a soft toothbrush if mouth is tender. Suck ice cubes. Try sucking sugar-free sweets. Try to make your food moist with sauces or gravy. Chewing can stimulate saliva so try sugar-free chewing gum. Use mouthwashes regularly. Use lip balm to soothe dry lips. There are also some prescription products available to help with a dry mouth such as artificial saliva sprays (e.g. Saliva Orthana or Glandosane sprays), saliva stimulating tablets and the Biotene range of products (toothpaste, mouthwash, gel). Tips for coping with diarrhoea • Avoid eating high fibre foods e.g. beans, wholemeal and brown flours, wholemeal bread or pasta, high fibre cereals and dried fruits. • Drink plenty of fluids to replace fluid lost with diarrhoea. • It can help to avoid highly spiced foods, alcohol and strong tea and coffee. • Have small frequent meals. 10 Pancreatic Cancer UK 2012 For specialist information and support on pancreatic cancer contact our Support Line: Telephone 020 3535 7099 or email [email protected] Tips for coping with taste changes • Common food and drink to be affected by taste changes are tea, citrus fruit, chocolate and red meat. • Try to eat foods that taste good, if there are any. • Leave out foods that do not taste good, but try them again every few weeks as your taste may change again. • If you cannot eat red meat try eating chicken, turkey, fish, eggs or cheese as other good types of protein. • Season your food using mustard, herbs, pepper, spices or lemon juice. However do not do this if you have a sore mouth. • Maintaining good oral hygiene is important. Brush your teeth after meals and snacks and use any mouthwashes prescribed regularly. Brushing your teeth before eating may also help. Further information and support Pancreatic Cancer UK Pancreatic Cancer UK is the only national charity fighting pancreatic cancer on all fronts: support, information, campaigning, research. We are striving for a long and good life for everyone diagnosed with pancreatic cancer. Dedicated pancreatic cancer support and information service • We run a confidential Information and Support Line for anyone affected by pancreatic cancer. Our Support Team can provide individual specialist information about pancreatic cancer, treatment options and managing symptoms and side effects. We can also listen to your concerns and provide support. The service is available Monday to Friday, 10am-4pm. Telephone - 020 3535 7099 (calls are charged at your standard network rate) Email - [email protected] • We run online discussion forums for pancreatic cancer patients, their carers and families to enable them to share experiences, information, inspiration and hope. http://forum. pancreaticcancer.org.uk • We provide easy access to the best and most up-to-date information on pancreatic cancer www.pancreaticcancer.org.uk 11 Pancreatic Cancer UK 2012 For specialist information and support on pancreatic cancer contact our Support Line: Telephone 020 3535 7099 or email [email protected] Other organisations British Dietetic Association (BDA) Telephone: 0121 200 8080 Website: www.bda.uk.com Provides information on following a healthy diet and finding a state registered dietician. British Nutrition Foundation Telephone: 020 7404 6504 Website: www.nutrition.org.uk Provides information on following a healthy diet and how diet may be linked to cancer. Foods Standards Agency Helpline: 020 7276 8829 Website: www.food.gov.uk Responsible for food safety and food hygiene across the UK Penny Brohn Cancer Care Helpline: 0845 123 2310 Website: www.pennybrohncancercare.org Provides information and advice on healthy eating and gentle exercise World Cancer Research Fund Telephone: 020 7343 4205 Website: www.wcrf-uk.org Provides information on cancer and diet. This fact sheet has been produced by the Support and Information Team at Pancreatic Cancer UK. It has been reviewed by healthcare professionals and people affected by pancreatic cancer. References to the sources of information used to write this booklet and an acknowledgement of the health professionals who reviewed the booklet are available on our website - www.pancreaticcancer.org.uk/diet Pancreatic Cancer UK makes every effort to make sure that its services provide up-to-date, unbiased and accurate information about pancreatic cancer. We hope that this information will add to the medical advice you have received and help you to take part in decisions related to your treatment and care. Please do continue to talk to your doctor, specialist nurse or other members of your care team if you are worried about any medical issues. Pancreatic Cancer UK 2nd floor, Camelford House 87-90 Albert Embankment London SE1 7TW Telephone: 020 3535 7090 Email: [email protected] Website: www.pancreaticcancer.org.uk © Pancreatic Cancer UK May 2012, Review date August 2013 Pancreatic Cancer UK is a charity registered in England and Wales (1112708) 12 Pancreatic Cancer UK 2012 For specialist information and support on pancreatic cancer contact our Support Line: Telephone 020 3535 7099 or email [email protected]