Living with dry mouth/Te noho me te waha maroke

Living with Cancer: A guide for people with dry mouth

Cancer Society

Adapted in accordance with Section 69 of the Copyright Act 1994 by the Royal New Zealand Foundation of the Blind, for the sole use of persons who have a print disability.

Produced 2016 by Accessible Format Production, Blind Foundation, Auckland, New Zealand.

This edition is a transcription of the following print edition:

© 2015 Cancer Society of New Zealand Inc,
PO Box 12700, Wellington 6011.

Sixth Edition 2015

ISBN 978-0-9941076-2-6

www.cancernz.org.nz

Any cancer, any question 0800 CANCER (226 237) Cancer Information Helpline

Transcriber's Note

Images have been omitted in this e-text edition. Symbol-based footnotes have been replaced with sequential numbered footnotes. Feedback form omitted.

Publications statement

Our aim is to provide easy-to-understand and accurate information on cancer and its treatments. Our Living with Cancer information booklets are reviewed and updated by cancer doctors, specialist nurses and other relevant health professionals to ensure the information is reliable, evidence-based and up-to-date. The booklets are also reviewed by consumers to ensure they meet the needs of people with cancer and their carers.

Other titles from the Cancer Society of New Zealand/Te Kāhui Matepukupuku o Aotearoa

Booklets

Advanced Cancer/Matepukupuku Maukaha

Breast Cancer/Te Matepukupuku o ngā Ū

Cancer Clinical Trials

Cancer in the Family: Talking to your children

Chemotherapy/Hahau

Coping with Cancer: A guide for people with cancer

Eating Well During Cancer Treatment/Kia Pai te Kai te wā Maimoatanga Matepukupuku

Emotions and Cancer

Getting on with life after treatment/Te hoki anō ki tō toioranga whai muri I te maimoatanga

Radiation Treatment/Haumanu Iraruke

Sexuality and Cancer/Hōkakatanga me te Matepukupuku

Talking about grief and loss

Brochures

Being Active When You Have Cancer

Questions You May Wish To Ask

Information, support, and research

The Cancer Society of New Zealand offers information and support services to people affected by cancer. Printed materials are available on specific cancers and treatments. Information for living with cancer is also available.

The Cancer Society is a major funder of cancer research in New Zealand. The aim of research is to determine the causes, prevention, and effective methods of treating various types of cancer. The Society also undertakes health promotion through programmes, such as those encouraging SunSmart behaviour, healthy eating, physical activity, and discouraging smoking.

We appreciate your support

Many Cancer Society services would not be possible without the generous support of many New Zealanders.

Acknowledgements

The Cancer Society would like to thank for their reviews, advice, and contributions:

Dr Christopher Jackson, the Cancer Society of New Zealand's Medical Director and Medical Oncologist for the Southern District Health Board

Charlene E. Tan, Dietitian, Christchurch

We would also like to acknowledge that this booklet was first created as part of research for the University of Otago, Post Graduate Diploma in Dietetics.

Helen Brown, Community Dietitian, Nurse Maude Association, Christchurch

Dr Jane Elmslie, Dietitian/Researcher, Psychological Medicine, Christchurch School of Medicine

Jonathan Rea, Dietitian, Lea Stening Health, Christchurch

Lea Stening, Director, Senior Paediatric & Sports Dietitian, Lea Stening Health, Christchurch

Tory Crowder, Dietitian, Auckland City Hospital

Dr David Hay, Oral Medicine Specialist, Oral Health Regional Services, Auckland District Health Board, Auckland

Noelle Farrell, Clinical Nurse Specialist/Navigator ORL, Auckland City Hospital

Natalie James, National Nurse Lead, Auckland District Health Board, Auckland

Esther Ong, Speech Language Therapist, Auckland City Hospital

Cancer Society Information Nurses, Michelle Gundersen-Reid, Julie Holt and Viv Williams

Sarah Stacy-Baynes, National Information Manager

Volunteers

Many thanks to the Cancer Society volunteers who agreed to be photographed for our booklet covers. Our thanks also to Brian and Lee Sheppard, and those affected by dry mouth and their carers who reviewed our drafts and gave us many valuable suggestions, quotes, and recipes to include in the booklet.

Photography

Lindsay Keats of Lindsay Keats Photography in Wellington took the photograph for our booklet cover.

Page 1

Living with a dry mouth

This booklet will inform and offer suggestions to people who have a dry mouth and those caring for someone with a dry mouth. Dry mouth often means you can no longer eat the food you usually do and this makes choosing food difficult.

The booklet has sections on food choices and preparation tips, many of which have been contributed by people with a dry mouth.

This information is a general guide and it is not intended to replace advice from your doctor, dentist, or registered dietitian. If you have questions about your condition or the quality of your diet, please talk to your doctor, dentist, or registered dietitian.

Te whaihanga i te waha maroke

I waihangatia tēnei pukapuka hei whakamārama, hei hoatu whakaaro hoki mō ngā tāngata mate waha maroke, mō rātou rānei e tiaki ana i tētahi tangata e mate ana i te waha maroke. Ko te tikanga kua kore e taea e koe te kai ngā kai i kainga e koe ki mua. Ka uaua te mahi kōwhiri kai. He wāhanga kōwhiri kai kei roto i te pukapuka nei me ētahi kōrero mō te whakataka kai ā, i tukuna mai te nuinga o ēnei e ngā tangata mate waha maroke.

He aratohu whānui ngā kōrero o te pukapuka nei, ehara i te mea ka whai mana ake i ngā kōrero a tō rata, tō kaitiaki niho, tō mātanga-ō rānei. Mehemea he pātai āu e pā ana ki tō mate, ki te kounga o tō rārangi kai rānei, me whai tohutohu mai i tō rata, tō kaitiaki niho, tō mātanga-ō rānei.

Page 2

Contents

What is dry mouth?: Page 3

Why is saliva important?: Page 4

Symptoms of a dry mouth: Page 4

What causes a dry mouth?: Page 6

Ways to treat symptoms of a dry mouth: Page 8

Tips on living with a dry mouth: Page 10

Mucositis/Stomatitis: Page 12

Tips for living with a sore mouth: Page 12

Comments and suggestions from people living with a dry mouth ... 14 Tips for keeping teeth healthy: Page 16

What's out there for me to use?: Page 18

Eating or dining out tips: Page 20

Foods you may need to avoid: Page 24

Food preparation tips: Page 25

Sample menu: Page 28

Meal ideas: Page 31

Suggested websites and organisations: Page 34

Notes: Page 35

Feedback: Page 41

Page 3

What is dry mouth?

When your body makes too little saliva (spit) to wet the inside of your mouth or the amount of water in the saliva is less than normal you will have a dry mouth.

A dry mouth can cause problems with speech, taste, chewing, and swallowing. Having less saliva can cause dental decay and infections in your mouth. The medical name for dry mouth is Xerostomia (zeer-oh-stoh-mee-ah).

He aha te waha maroke?

Page 4

Why is saliva important?

Saliva wets your mouth and lips.

Saliva:

Symptoms of a dry mouth

These may include some of the following:

Page 5

Ngā tohumate o te waha maroke

Tērā pea ka pā ētahi o ēnei e whai ake:

Page 6

What causes a dry mouth?

Illness

Some auto-immune conditions, such as Sjögren's syndrome, (See Footnote 1) cause the body to attack itself, destroying glands such as the salivary glands.

Footnote 1: Sjögren's (show-grins) syndrome is a condition in which the body's immune system attacks its own exocrine glands (glands in the body that produce moisture, e.g. sweat, saliva, etc.).

Radiation treatment

People who have head and neck radiation treatment are more likely to get a dry mouth because the salivary glands can be damaged by radiation.

Chemotherapy

Chemotherapy drugs can cause thick saliva, making the mouth feel dry. Chemotherapy can also cause mouth infections.

Medication

A dry mouth is a side effect of many medications. Anti-depressant medications and mood stabilising medications can often cause salivary glands to make less saliva. A dry mouth is also a side effect of medications used to treat chronic pain, allergies, and high blood pressure.

Page 7

"Sipping water (sometimes milk), sucking mints, gum, or just sucking something works for me."

Page 8

Ways to treat symptoms of a dry mouth

Some people who have a dry mouth may also have a sore mouth.

"Use salt, baking soda and water to gargle and rinse

your mouth."

"Hold water or ice in your mouth."

"A mixture of equal quantities of salt and baking soda ½ tsp in glass of warm water—is useful to promote a healthy mouth."

"Ask your doctor about thrush lozenges."

"Put gel on with cotton buds."

"Avoid foods that will aggravate the situation."

Page 9

Ngā huarahi hei tiaki i ngā tohumate o te waha maroke

Tērā pea ka mamae te waha o ētahi tangata mate ana i te waha maroke.

"Whakamahia te tote me te wai hei horoi i tō waha."

"Pupuritia he wai, he hukapapa rānei i roto i tō waha."

"He mea pai tonu tētahi raranu tīpune tote me te tīpune pēkena houra—ki roto i te karaehe wai mahana ½ hei āwhina i te ora o te waha"

"Uiuitia tō rata mō te āhua o ngā thrush lozenges."

"Pania te pia mā ngā miroao."

"Karohia ngā kai whakapōrearea i a koe."

Page 10

Tips on living with a dry mouth

Page 11

Ētahi āwhina mō te noho me te waha maroke

Page 12

Mucositis/Stomatitis

Mucositis/Stomatitis is the swelling, irritation, and ulceration of the mucous lining of the mouth.

Ko te Mucositis/Stomatitis, ko te pupuhitanga, ko te māngeongeo me te kea o ngā huare kakaru o te waha.

Tips for living with a sore mouth

"Will spittle return to the mouth?"

Page 13

Anei etahi āwhina mō te noho me te waha maroke

"E hoki oti te hūare ki te waha?"

Page 14

Comments and suggestions from people living with a dry mouth/He kōrero, he whakaaro nā ētahi tāngata noho ai me te mate waha maroke

Difficulty swallowing

"Drink water."

"Always have a glass of water on the table when you're eating."

"Sip water with each mouthful if you need to."

"Take small mouthfuls."

"Eat soft foods."

"Mash vegetables, cut meat into small pieces."

Cooking tips

"Meat and vegetables should be well-cooked and served with sauces or gravy."

"Baking needs fillings or icing."

"If you're serving cold corn beef, make parsley sauce to moisten the meal."

"Heat some food on defrost in the microwave. I find it makes them softer."

Page 15

"Casseroles are easier to eat than roasts or chops. Thinner sauces are easier to eat. Cooked fruit is easier to eat than fresh. Vegetable soup is an easier way of eating vegetables."

"Mash hard foods."

"Lightly boil or poach eggs."

"Sprinkle oils over anything dry."

Some suggestions for mealtimes

"Gravies and sauces help you swallow food."

"Try to add liquid to the meals."

"I always make gravy, sauces, and custards."

Page 16

Tips for keeping teeth healthy

Footnote 2: People with the very rare condition of phenylketonuria are unable to break down phenylalanine and so should not use aspartame.

Page 17

"I find that I have more food trapped between my teeth after a meal than before I had treatment. Rinsing the mouth is certainly necessary, but I find that the daily flossing of my teeth has become much more important than before. I find it most helpful when cleaning my teeth to rinse my mouth first, floss, rinse again, clean them, and then after my night-time clean I apply tooth mousse."

Brian

He āwhina kia noho hauora ai ngā niho

Footnote 3: Ruarua ngā tāngata ka pāngia e te phenylketonuria; inahoki, kāore e taea e rātou te whakamahea i te kaha o te phenylananine. Nā runga i tērā, me kaua rātou e whakapā ki te aspartame.

Page 18

What's out there for me to use?

Mouth rinse

  • Biotène Gentle Mouthwash

  • Chlorhexidine 0.2%, 0.1%—various brands

  • NeutraFluor 900 Mouth Rinse

  • Savacol Alcohol Free.

Chewing gum

  • Biotène Dry Mouth Gum (with xylitol) (available at pharmacies)

  • Recaldent chewing gum (See Footnote 4)

  • Trident Sugar Free Gum

  • Wrigley products—sugar free; 1. Wrigley's Extra Sugar Free Gum for kids (with xylitol); 2. Extra Professional (with xylitol)

  • Look out for any gum with xylitol.

Footnote 4: Recaldent chewing gum is available from dentists and it is mainly used to reduce tooth decay and sensitivity rather than treating a dry mouth. You may like to ask your dentist or dental hygienist about this product.

Medications

Pilocarpine, and cevimeline, which is currently not available in New Zealand but is used overseas, can be used to treat dry mouth. However, they do have side effects and are not an answer for everyone. You may wish to ask your doctor/dentist about them at your next appointment.

Page 19

Sugar-free sweets (see Footnote 5)

  • Any sugar-free sweets that have xylitol or any other artificial sweeteners

  • SMINT Mints (with xylitol).

Footnote 5: Caution—sugar-free sweets can be acidic, such as berry and lemon flavours so don't use them too often.

Moistener/lubricating gel/artificial saliva

  • Luborant

  • Oral Balance Moisturizing Spray (with xylitol)

  • Oral Balance Moisturizing Gel (with xylitol)

  • Oralube.

Toothpaste and topical applications

  • Biotène Antibacterial Dry Mouth Toothpaste

  • Bicarbonate containing toothpaste

  • Chlorhexidine gels

  • NeutraFluor 5000 Toothpaste

  • Oralbalance Gel

  • Other fluoridated toothpaste

  • Tooth mousse (these are available from your dentist).

These are just a few examples of what may be available at chemists or shops. Please talk with your dentist if you have any questions about what is suitable for you.

Page 20

Eating or dining out tips

You may have to eat more slowly. If you are going out for dinner it may help to eat a little before you go. You may find it easier to both chat and eat if you choose smaller, soft textured meals.

Page 21

He āwhina mō ngā wā puta ai ki te kai

Page 22

Going to a barbeque or a hangi?

Te puta ki te kai hūhunu, te kai hangi rānei?

Page 23

"Finding food you can eat is trial and error. Just give things a go."

Page 24

Foods you may need to avoid

Salty, spicy or foods high in acid may damage your mouth and teeth without the protection of saliva. People who have a dry mouth may have problems eating the following:

Fruit, vegetables, or juices

  • lemons and limes

  • oranges

  • grapefruit

  • tangerines

  • mandarins

  • kiwifruit

  • fresh tomatoes.

Spicy or salty foods

  • curry

  • paprika

  • cayenne

  • chilli

  • salty chips.

Dry or coarse foods

  • toast

  • crackers

  • cakes, buns, muffins, or scones.

Page 25

Food preparation tips

  • Use a stick blender, counter-top blender, or food processor to blend soups, salsa, mince and sauces so they are easier to swallow.

  • Make your home-made, canned, or packet soup more nutritious by adding noodles, lentils, macaroni, and/or extra vegetables.

  • Add cream, cream cheese, custard, ice cream, margarine, vegetable oil, milk, or cheese to your meals to add extra calories if you need to gain weight. (see Footnote 6)

  • Pureed meals can be stored in containers and frozen to use later. If the meal is too thick after defrosting add more water or milk.

  • Pureed meat often loses its colour and flavour. Try adding tomato paste or puree, soya or Worcestershire sauce, herbs, and mushrooms.

  • Pureed vegetables, such as silverbeet and other green vegetables, can look dull and unappealing. Try adding a little mashed potato or add a small amount of instant potato flakes to help improve the appearance and texture. Tasty combinations include swede and carrot, carrot and parsnip, and beans and parsnip.

  • If your mouth is very dry, try milkshakes blended with ice blocks and a small amount of vegetable oil. The oil (see Footnote 6) helps to coat your mouth.

Footnote 6: Oily foods can also help moisten your mouth. Go easy on the amount if you are overweight.

Page 26

He āwhina mō te whakataka kai

Page 27 Pages 28-29

Sample menu

Our sample menu is included as a guide only and should not be used to replace any advice you may have been given by a dietitian.

If your traditional diet includes food different from those listed below, talk to your dietitian.

Comments

Breakfast

  • 1 cup porridge or ½ cup cereal (soaked with milk)

  • ½ cup of milk (See Footnote 7)

  • ½ cup of tinned fruits or stewed fruit (e.g. prunes) (See Footnote 8)

  • 1 glass water

  • 150ml pottle of lite yoghurt

Footnote 7: Use trim milk or calcium enriched milk, especially if you are watching your weight.

Footnote 8: Watch the amount of sugar used and don't forget to brush your teeth.

Snack

  • 1 banana

  • 1½ glasses water

Page 30

Lunch

  • ½ tin of baked beans (see Footnote 9) or spaghetti

  • ¼ cup cheese (See Footnote 10) on ×2 wholemeal toast/bread or as a toastie pie

  • ½ cup of fruit [e.g. peaches (in fruit juice/light syrup)]

  • 2 glasses water

Footnote 9: Baked beans are a good fibre for your meal.

Footnote 10: Try using cheeses that are lower in fat, such as Edam or Cottage Cheese.

Snack

  • 1 cup milkshake (See Footnote 11): milk; ½ banana; handful of berries

Footnote 11: Try adding some oil. It helps to coat the insides of your mouth. Watch the amount if you are watching your weight.

Dinner

  • Chicken and Tomato Rice: 1½ cups rice (cooked); 100g chicken breast/thigh fillets (See Footnote 12); tomato pasta sauce; vegetables (See Footnote 13); cheese (See Footnote 14) 20g

  • 2½ glasses water

Footnote 12: Trim off the skin if you are watching your weight.

Footnote 13: Adding more vegetables can help increase your fibre intake.

Footnote 14: Try using cheeses that are lower in fat, such as edam or cottage cheese. Watch the amount you use if you are watching your weight.

Page 31

Meal ideas

Breakfast options

  • Bran cereals (See Footnote 15)/muesli with milk (See Footnote 16), yoghurt, and fruit

  • Porridge with sultanas and milk (See Footnote 16) or yoghurt, and fruit

  • Scramble eggs on soft bread

  • Omelette served with mashed potato or soft bread

  • Milkshakes (See Footnote 16)

  • Savoury custard with ham, vegetables, tomato puree, or fish

  • Cooked sliced egg in a cheese (See Footnote 17) sauce or mild curry sauce on rice.

Snack options

  • Yoghurt (fresh or frozen) or ice cream

  • Sandwiches—with ham/egg/grated cheese, (See Footnote 17) minced chicken and mayonnaise, peanut butter

  • Ice blocks—popsicles.

Footnote 15: High in fibre: a good alternative if you get constipation and are in need of more fibre.

Footnote 16: Trim/CalciTrim milk are recommended, if you are watching your weight.

Footnote 17: An example of lower fat cheese is edam/cottage cheese.

Page 32

Lunch or dinner options

  • Baked beans or spaghetti with grated cheese (see Footnote 18) on bread

  • A bowl of soup, e.g. pumpkin soup or green velvet soup, with bread

  • Sandwiches with a serving of meat, egg, vegetable, or cheese fillings

  • Egg noodles, stir-fried vegetables.

Footnote 18: An example of lower fat cheese is edam/cottage cheese.

Page 33
  • Scrambled eggs on soft bread

  • Salmon steak on rice with green beans

  • Pork with prunes and apricots

  • Springtime pie

  • Chicken and tomato rice.

Page 34

Suggested websites and organisations

The suggested websites (other than our own) are not maintained by the Cancer Society of New Zealand. We only suggest sites we believe offer credible and responsible information, but we cannot guarantee that the information on such websites is correct, up-to-date, or evidence-based medical information. We suggest you discuss any information you find with your cancer care health professionals.

Cancer Society of New Zealand Inc.

Cancer Information Helpline: 0800 CANCER (0800 226 237)

Website: www.cancernz.org.nz

Arthritis New Zealand

Website: www.arthritis.org.nz

Street address: Level 2, 166 Featherston Street, Wellington

Postal address: PO Box 10-020, Wellington

Phone: (04) 472-1427

Fax: (04) 472-7066

Mental Health Foundation New Zealand

Website: www.mentalhealth.org.nz

Street address: 81 New North Road, Eden Terrace, Auckland 1021

Postal address: PO Box 10051, Dominion Road, Auckland 1446

Tel: (+ 64 9) 300-7010

Fax: (+ 64 9) 300-7020

Resource Centre: (+ 64 9) 300-7030

Resource Centre email: resource@mentalhealth.org.nz

Pages 35-38

Notes

You may wish to use this space to write down any questions you want to ask your doctors, nurses, or health providers at your next appointment.

Whakamahia tēnei wāhi wātea hei tuhi pātai e hiahia ana koe ki te pātai i tō rata, ngā tapuhi, ngā kaiwhakarato hauora rānei mō te wā e hoki atu ai koe.

Page 39

Cancer Society of New Zealand Inc. Te Kāhui Matepukupuku o Aotearoa

National Office

PO Box 12700, Wellington 6144

Telephone: (04) 494-7270

Auckland Division

PO Box 1724, Auckland 1140

Telephone: (09) 308-0160

Covering: Northland

Waikato/Bay of Plenty Division

PO Box 134, Hamilton 3240

Telephone: (07) 903 5800

Covering: Tauranga, Rotorua, Taupo, Thames, and Waikato

Central Districts Division

PO Box 5096, Palmerston North 4441

Telephone: (06) 356-5355

Covering: Taranaki, Wanganui, Manawatu, Hawke's Bay, and Gisborne/East Coast

Page 40

Wellington Division

52-62 Riddiford Street, Wellington 6021

Telephone: (04) 389-8421

Covering: Marlborough, Nelson, Wairarapa, and Wellington

Canterbury/West Coast Division

PO Box 13450, Christchurch 8141

Telephone: (03) 379-5835

Covering: South Canterbury, West Coast, and Ashburton

Otago/Southland Division

PO Box 6258, Dunedin 9059

Telephone: (03) 477-7447

Covering: Urban and rural Otago and Southland

Cancer Information Helpline

0800 CANCER (226 237)

www.cancernz.org.nz

End of Living with dry mouth