Introduction

Welcome to NET Nutrition - a new nutrition tool, made specifically for those living with Neuroendocrine Tumors (NETs) or Carcinoid Syndrome. Nutrition plays a vital role in our overall health. It is important that we consume the right type of foods for our bodies to perform at their best! However, determining which nutrients are right for you while living with NETs can sometimes be challenging. Thanks to a dedicated group of NET Nutritionists, a series of nutrition topics have been compiled just for you. The NET Nutrition series, being released over the coming months, will provide suggested new recipe ideas as well as some tips to help you manage typical diet-related symptoms which can help with possible options when discussing your diet and symptoms with your healthcare team.

Meet our NET Nutrition contributors:

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DEIRDRE BURKE, RD

Deirdre qualified as a dietitian in 2010 from the University of Hertfordshire in the UK. She worked as a dietitian in Oncology, Gastroenterology and Renal in the UK prior to taking up her current post as a Senior Dietitian at St. Vincent's University Hospital in Dublin Ireland. She works in pancreatic cancer, advising people on how to choose good foods for their individual health needs. She also works with patients with NETs advising patients who may not be able to fully digest and/or absorb essential nutrients from their food, helping those stay nourished during their treatment, preventing or reversing poor nutrition, and managing symptoms related to diet.

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LEIGH ANNE KAMERMAN BURNS, MS, LDN, RD

Leigh Anne is a Registered Dietitian Nutritionist in the United States. She has been practicing for 27 years, specializing in Oncology and HIV. In addition to her work as Clinical Nutritionist she has dedicated significant time and effort to cancer prevention and early detection programs. As an Instructor of Clinical Medicine for 25 years with LSU Medical School New Orleans, she has had the opportunity to educate patients, medical students, dietetic Interns and other healthcare providers on the importance of nutrition including nutrition for patients living with NETs. She has practiced in New Orleans, Louisiana, in Outpatient Oncology Clinic specializing in Neuroendocrine Tumors since 2002, working with physicians and surgeons who all contribute to changing the lives of patients living with NETs.

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TARA WHYAND MSC, BSC, DIETITIAN

Tara graduated in human biology and then dietetics in England and then took her Australian examinations in 2010. From this time Tara chose to specialize in cancer and worked for the Cancer Council NSW and then the Royal Free Hospital in London. Tara has specialized in NETs for just over 5 years and currently runs NET research projects and develops resources at the Royal Free Hospital. Her current focus is on small intestinal bacterial overgrowth, complementary therapies, nutritional side effects of somatostatin analogues, micronutrient deficiencies, and improving nutrition after surgery. Tara has a private clinic in London and Essex.

Tips for Dealing with Nausea and Vomiting

Tips for Dealing with Nausea and Vomiting

By Deirdre Burke

It can be difficult to eat if you are feeling nauseous; the following tips can make it easier:

  • Eat little and often rather than large meals.

  • Try dry crackers, toast and biscuits.

  • High fat foods such as cheese, cream and fried foods may make you feel worse.

  • Ginger and peppermint may help relieve nausea such as ginger biscuits, ginger ale, ginger cake and peppermint tea or water.

  • The smell of cooked food can make the nausea worse, cold bland foods may be better tolerated (e.g. sandwiches, crackers and cheese, yoghurts, cold meats).

  • Avoid lying down for an hour after eating.

  • Try getting some exercise, particularly outdoors.

  • Make sure you drink plenty of fluids to keep hydrated. Aim for 6-8 glasses per day (can include juices, fizzy drinks and/or tea). If your nausea has settled you should include nourishing milky drinks.


Food and Beverage Triggers of Carcinoid Syndrome

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By Leigh Anne Burns

Vasoactive amines are a type of molecule that naturally occurs in our bodies and in the foods we eat. Foods high in vasoactive amines, such as tyramine and histamine, may promote symptoms specific to carcinoid tumors including flushing, diarrhea, abdominal pain, and weight loss. For patients experiencing such symptoms, avoidance of aged foods which can be high in vasoactive amines, particularly tyramine, may help relieve symptoms.

The following foods contain vasoactive amines and it might be helpful to avoid them. Other factors such as fatty foods or large meals may also increase symptoms.

  • Chocolate

  • Smoked, pickled, and spicy foods with pepper, cayenne pepper, mustard

  • Some nuts like peanuts, Brazil nuts, and coconut

  • Aged cheeses like Stilton, Camembert and cheddar

  • Milk

  • Bananas

  • Alcoholic and caffeinated beverages

Learn how to make Fresh Fruit Salad and an Egg Salad Sandwich:

Fresh Fruit Salad

Serves four, 4 oz servings (approximate)

Ingredients

  • 1/2 cup apple - peeled and diced

  • 1/2 cup fresh peach - peeled and diced

  • 1/2 cup strawberries - cleaned, top removed and sliced

  • 1/2 cup - mini marshmallows

  • 1 teaspoon chopped fresh mint

  • 6 ounces vanilla Greek yogurt (non-fat)

  • 1/2 cup whipped cream (fat-free)

Directions

  1. Add all ingredients except whipped cream to large bowl and combine gently.

  2. Place in refrigerator to chill for 15 minutes.

  3. Serve with a dab of whipped cream on top.


Egg Salad Sandwich

Ingredients

  • 1 slice of bread (3g of fiber or less) cut in half

  • 2 eggs boiled and chopped

  • 1 ounce low-fat American cheese

  • 1 tablespoon low-fat mayonnaise

  • 1 teaspoon mustard

  • 1 teaspoon pickle juice (optional)

  • 1/4 teaspoon salt

  • A dash of pepper

Directions

  1. Combine all ingredients and spread on one bread half and cover with other half.


Common Deficiencies

Common Deficiencies

By Tara Whyand

Individuals who have been diagnosed with a NET will be at risk for vitamin and mineral deficiencies for many reasons. Some people have changes in metabolism or may have tumors that directly use up vitamins. Some people have difficulty eating enough food while others cannot absorb enough nutrients. The list below is not exhaustive, but contains the main nutrients you should discuss with your healthcare team.

Fat Soluble Vitamins

Micronutrient deficiencies of vitamins A, D, E, and K and weight loss can occur if you are not absorbing fat due to somatostatin analogue injections, pancreatic surgery, or bile acid malabsorption.

These vitamins should be checked with a blood test if you have had one or more of the above risk factors. Vitamin A deficiency may reflect in vision problems, vitamin D with bone thinning, vitamin E with skin dryness and vitamin K with bruising and bleeding. Vitamins will be prescribed orally or by injection.

Vitamin B12

If you have had stomach or ileal (end of the small bowel) surgery, or you have been given somatostatin analogue injections, you may be at risk of developing vitamin B12 deficiency. In some patients, certain bacteria in the small intestine grow in higher numbers than normal and use up vitamin B12. You should have your vitamin B12 levels checked and if low, B12 will be prescribed orally or as an injection.

Vitamin B3 and Carcinoid Syndrome

Some NET tumors secrete large amounts of serotonin using up the nutrient building blocks also used to make the vitamin niacin (Vitamin B3). This may then cause a niacin deficiency which can lead to diarrhea, dermatitis and dementia.

As a result, diets should aim to provide increased amounts of nutrients used to build niacin:

  • Have 4-6 small high protein meals/snacks. High protein foods include: Fish, poultry, lean meat, eggs, low-fat dairy, whey protein powder/products.

  • All patients with carcinoid syndrome should discuss taking a nicotinamide- containing supplement with their health-care team to treat and prevent this deficiency. Nicotinamide containing tablets should be taken alone, or as part of a multi-B vitamin supplement. There is no one dose for everyone, as it depends on your current blood levels. Some people may need over 100 mg of nicotinamide a day.

Iron

Lower iron levels are common in NET patients. There may be several causes including poor iron intake and dietary iron absorption-regulating factors. Patients may also lose iron due to blood loss from the tumors in intestinal or rectal NETs or after surgery. It may also be possible that diarrhea in NETs causes malabsorption of iron in the intestine too. Symptoms include tiredness, paleness, thinning hair, impaired immunity and feeling breathless. If you have any questions or concerns, you should talk to your health-care team. If you are clinically deficient your diet may be supplemented with iron tablets.

Others

If you have chronic diarrhea there may also be other nutrients which become too low and a full vitamin and mineral check would be recommended.


Approaches to Healthy Weight Gain

Approaches to Healthy Weight Gain

By Leigh Anne Kamerman Burns, MS, LDN, RD



Even though weight loss is common for patients during cancer treatment it is important to try to make every attempt to prevent it. Patients with NETs have challenges since the foods usually recommended for other cancer patients can increase symptoms such as diarrhea, which can increase weight loss. When selecting meat or dairy, try to choose lower fat options like chicken, turkey and low-fat yogurt. Pancreatic enzymes may be prescribed to improve digestion so fats can be tolerated. Cooking foods to soft consistency may improve absorption; chopping or mashing can improve digestion and decrease malabsorption. It can be helpful to increase the frequency of meals.

Here are some helpful tips:

  • Combining protein and calorie-dense foods as snacks between meals can increase the amount of calories consumed daily.

  • Nutritional drinks contain high levels of nutrients which may be more easily absorbed. Look for options low in fat, with no sugar added, or targeting diabetic patients.

  • Adding low-fat dairy such as yogurt, American cheddar cheese, ricotta or cottage cheese to dishes can increase calories and protein.

It is easy to prepare a high protein entree and cold foods are great for the summertime. Try the recipes below for making Soft Scrambled Eggs and Macaroni and Chicken Salad.

Macaroni and Chicken Salad

Serves four, 4 oz servings (approximate)

  • 1 cup cooked macaroni

  • 1 cup chopped cooked chicken

  • 1/2 cup non-fat plain Greek yogurt

  • 1 chopped egg

  • 1 tablespoon fresh basil or herb of choice

  • 1 tablespoon chopped relish

  • 1 ounce low fat American or non-aged cheese, chopped

  • 1/8 teaspoon salt

  • A dash of pepper if tolerated

Directions

  1. Combine all ingredients

  2. Chill and serve

  3. Store in an airtight container

Soft Scrambled Eggs

Serves two

Ingedients

  • 2 eggs

  • 1/4 cup of butter

  • 1/4 cup of fill fat milk

Directions

  1. Add the butter and milk to a pot or pan and heat gently over low heat until the butter is melted (do not allow the milk to boil).

  2. Whisk the eggs and cream together and add the grated cheese.

  3. Slowly stir the egg mixture into the pot or pan.

  4. Cook for approximately 6 minutes, stirring occasionally.


Alternative Diets

Alternative Diets

By Deirdre Burke

You may have heard or read about a number of different 'alternative diets' and it is often our instinct to want to follow these diets to optimize our health. However, the vast amount of information available can sometimes be a little confusing. When reviewing the evidence on diet it is important to:

  • Consider that what works for one person may not work for another person. Everyone is different.

  • Confirm whether the author of an article has suitable qualifications to correctly interpret data.

  • Be aware of any ethical dilemmas e.g. is the person promoting a particular product as a paid endorsement?

Although no diet will cure Neuroendocrine Tumors (NETs), some diets can be quite helpful in controlling symptoms. However, be weary of any diets that cut out whole food groups or allow only particular foods or supplements. Overall, you should aim to have a good balanced diet with plenty of fruit and vegetables, remembering to including a protein and carbohydrate source with each meal. Note: Do remember to consult a doctor or healthcare professional before starting a particular diet.

The following simple recipe is an example of an excellent source of protein from the tuna, beans and quinoa. The quinoa also doubles as a good carbohydrate source and is low in saturated fats.

Recipe: Tuna, Bean and Quinoa Salad

Salad

  • 5oz can of white tuna in water (drained)

  • 1 cup (185g) of cooked quinoa

  • 2 chopped scallions

  • 15oz cannellini white beans (drained)

  • 8 cherry tomatoes chopped in quarters

Dressing:

  • 5 tablespoons (75g) of olive oil

  • 2 tablespoons of lemon juice

  • 1 tablespoon of clear honey

  • Black pepper to season

Directions:

  • Combine all the salad ingredients together

  • Mix the dressing ingredients together and whisk vigorously

  • Pour the dressing over the salad