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Caring for the carer—session three

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1 Caring for the carer—session three
Managing treatment side effects

2 Disclaimer: This material is published by Queensland Health and Mater Misericordiae Health Services Brisbane Limited (Mater) with the intention of providing information of interest. It is not intended to be a substitute for specific professional or clinical advice. Information may contain or summarise the views of others, and not necessarily reflect the view of Queensland Health or Mater. Although Queensland Health and Mater endeavour to publish accurate information, there is no guarantee that this information is up-to-date, complete or correct, and it must not be relied upon without verification from an authoritative source. Queensland Health and Mater do not accept any liability incurred by use of or reliance on this information.

3 Managing treatment side effects
Objective for this session is to discuss the main side effects of cancer treatments and some management options that may assist you in providing care and support to your loved one or friend during cancer treatment.

4 Side effects all treatments cause side effects of some type
side effects depend on which organ is being affected by the treatment in question your loved one will not experience all the side effects we discuss in this talk side effects are experienced by each individual according to their own health and sensitivities. Point 2 – if the patient is receiving radiation treatment, then the organ being irradiated is the origin of the side effects, e.g. if the bowel is affected, then there will be diarrhoea; if the skin – then sunburn type effects. If the patient receives chemotherapy, then, as chemo is a systemic treatment, side effects will be systemic, e.g. certain drugs cause nausea & vomiting – will affect eating & bowel habits. Point 3 to be also included – some drugs cause some side effects, whilst others have different effects. Those that cause the hair to fall out will also irritate the mouth & mucous membranes (mucositis), and affect the blood cell count. Others may cause nerve problems like numbness & tingling – they may also affect bowel function (constipation). Point 4 - You may know someone else who is receiving the same treatment. Both patients may experience the same side effects, however, probably not to the same extent. Each side effect in each individual is different in the way it affects the person, in its severity and duration. For example, one person may lose all their hair in the shower a week or so after treatment, while another person may lose clumps or just experience thinning.

5 Fatigue Fatigue is a common complaint of cancer treatment and may result from a variety of causes – the cancer itself, treatments, medications, pain, poor nutrition, anxiety, depression Very subjective Symptoms include tiredness, weakness, lack of energy, exhaustion, lethargy, depression, inability to concentrate, malaise, boredom, sleepiness, lack of motivation and decreased mental status. 72% - 99% of individuals with cancer complain of fatigue

6 Strategies to help education exercise—gentle and building
activity and rest patterns nutrition and hydration consult health professionals if problem continues. Allow your loved one to do activities they feel like doing, as long as they stop to rest as soon as they feel weary. Plan regular rest breaks. Monitor the amount of time your loved one sleeps during the day so they are not sleeping for long periods that will interfere with sleep at night. Avoid caffeine after 4 pm. Encourage your loved one to start and/or maintain an exercise program. Start exercising slowly and gradually increase the activity level. Try low- impact exercises like walking, cycling or pool exercises Have a ready supply of high energy meals/snacks for your loved one for busier days, ensure a bottle of water is taken with them where ever you go. Dried fruit and nut mix Cheese and crackers Peanut butter sandwich Nutritional supplements (eg: Ensure, Sustagen, Enlive, Resource)

7 Cognitive changes Sometimes after chemotherapy, a person may experience changes in their ability to remember or concentrate well. This is sometimes called “chemobrain”. Health professionals refer to these problems as cognitive deficits. Fortunately, the problem is generally mild and improves once chemotherapy ceases.

8 Symptoms of ‘chemo brain’
difficulty concentrating memory loss inability to think clearly word finding difficulties taking longer to complete tasks that were once quick and easy to do difficulty with new learning. It is important to note that other conditions unrelated to cancer treatment can cause cognitive changes. These are treatable factors that can cause temporary but similar side effects in people undergoing chemotherapy. These include: Medication to treat side effects e.g. nausea Stress Anxiety Depression Nutritional problems Fatigue Low blood counts Hormonal changes related to certain types of cancer treatments Sleep disturbances

9 Help with cognitive changes
discuss memory and thinking changes openly with your loved one suggest keeping a journal of chemobrain symptoms to discuss with their doctor suggest asking the doctor if chemobrain symptoms could be related to anything that could be easily treated. If you notice changes in your loved one’s thinking, memory or behaviour, discuss this with them and suggest keeping a record or journal of the symptoms that occur including time of day, situation and if symptoms are getting worse. Together, make an appointment to talk to your doctor about these problems. Ask if chemobrain symptoms could be related to anything that could be more easily treated, such as low blood counts or medications that could be affecting your loved one’s ability to think clearly.

10 Help with cognitive changes
encourage good nutrition, exercise and sleep encourage use of memory prompts—diaries, calendars, lists, memory boxes encourage memory exercises refer to Managing treatment side effects fact sheet for further strategies. Strategies to help with memory and thinking Encourage use of memory tools-diaries, planners, lists, personal memory boxes to place keys, wallets, reading glasses Place reminders (post its) around your home of tasks that need to be done Encourage good nutrition, exercise and sleep Encourage memory exercises-reading, writing, doing puzzles, playing computer games Help divide tasks into manageable parts that your loved one can cope with The health care team can be very helpful to you and your loved one in working out strategies to manage thinking and memory problems related to chemotherapy. If cognitive symptoms are sudden in onset seek medical advice immediately.

11 Mouth problems—mucositis
inflammation of lining of mouth and throat can cause painful ulcerated lesions with bleeding and infection can make it difficult to swallow, eat and drink temperature should be monitored four hourly—report any elevation near 38oC— if over 38oC come into hospital. An inflammatory response affecting the lining of the mouth and throat, Remember! Mucous membranes also line the entire gastrointestinal system, so affects not just mouth & throat. If not detected early, may become painful ulcerated lesions with bleeding and infection May interfere with swallowing, eating and drinking as well as causing pain. These symptoms can lead to weight loss and dehydration Discuss with health professionals any changes in the patient’s condition - may need admission to hospital

12 Strategies to help education encourage oral care: pain control
bland mouth washes brush teeth with soft toothbrush and gentle toothpaste remove and brush dentures flossing pain control assist with dietary modification. Education – that is why you are here Your loved one should perform mouth washes after every meal and bedtime. If mucositis becomes severe, frequency of mouthwashes should increase to two hourly. Suggest alternating sodium bicarbonate and water (1/2 tsp in 1 glass), or warm saline (1/2 tsp salt in 1 glass water), soft toothbrush / gauze for teeth. Discourage commercial mouthwashes (alcohol irritates) Discourage alcohol, smoking and caffeine drinks Encourage your loved one to: Remove and brush dentures within 30 minutes after eating and at bedtime, then soak dentures in 1.5% hydrogen peroxide for several minutes, and rinse. Floss teeth once daily after brushing. Don’t if it causes pain, if platelet count decreased, or if white cell count decreased (ask your health professional). Use pain control-topical anaesthetics –xylocaine viscous before eating and as needed to control pain in the mouth. Take pain killers to control pain – given 1.5 hours before meals and at regular intervals around-the-clock if pain is constant, as prescribed. Encourage your loved one not to resist taking stronger drugs for severe pain. It is better to take painkillers and be able to eat and drink than to carry on without. Ensure your loved one informs their doctor if they cannot swallow pills because of mouth sores. Their doctor may prescribe skin patches or liquid medication instead.

13 Dietary tips for sore mouth
ensure food is soft and soothing encourage person to keep mouth moist avoid offering: irritating, acidic foods and juices spicy or salty foods rough or dry foods refer to Help with eating and drinking problems and Sore mouth and throat—what can I eat? fact sheets. Eat soft soothing foods (cool or at room temperature) Puree cooked foods in the blender to make them smoother and easier to eat. A Speech Pathologist will assist you and your loved one in determining the most suitable diet consistencies. Choose foods from the handout titled “Sore Mouth and Throat – What Can I Eat?” Soften food with gravy, sauces, broth, yoghurt or other liquids. Liquids are easier to get down if your mouth is very sore. Talk to a dietician about nutritious drinks and supplements for your loved one Sipping liquids with meals will make eating easier. Avoid offering irritating, acidic foods and juices Avoid offering spicy or salty foods and rough or coarse foods.

14 Mouth problems— Xerostomia (dry mouth)
encourage person to keep mouth moist and clean increase water intake no lemon/glycerine swabs or alcohol mouthwash refer to Eating and Drinking Problems fact sheet. Encourage your loved one to: Sip water or other sugar free juices frequently. Carry a water bottle with them during the day and keep a glass of water at bedside at night. Use a water soluble lip moisturiser to keep lips moist. Suck sugar free boiled lollies or chew sugar free gum to stimulate saliva production Alternate food with fluid during meals Eat soft, moist foods with plenty of sauces and gravy Avoid using lemon and glycerine swabs or mouthwash containing alcohol as they are drying and irritating. Avoid cigarettes, alcohol and caffeine products as this will make dry mouth worse If dry mouth is severe, ask health care team about artificial saliva or other dry mouth care products. Refer to “Eating and Drinking Problems” fact sheet for further strategies

15 Mouth problems— taste changes
encourage good oral hygiene offer new foods and flavour combinations sauces, gravies and marinades to add flavour use straws to bypass taste buds try other sources of protein if red meat tastes strange. While undergoing cancer treatment or taking certain medications, your loved one’s sense of taste may be altered. This can reduce their pleasure and interest in food You can help your loved one cope with taste changes by: Encouraging good oral hygiene Try offering strong flavours (garlic, lemon juice, herbs, spices and marinades). Try offering sharp tasting foods eg. fresh fruit, strong cheeses, mints, pickles. Use sauces and gravies liberally to flavour food Suggest using a straw to bypass the taste buds at the back of their mouth If you loved one complains that meat tastes strange, try other sources of protein such as fish, eggs, chicken, turkey, dairy products, baked beans, legumes, tofu If your loved one complains of a metallic or bitter taste in the mouth, suggest using plastic cutlery and avoid using food or liquids packaged in cans

16 Mouth problems—oral thrush
fungal infection of the mouth side effect of chemotherapy or antibiotics common if white blood cell count is low and mouth is dry can cause: oral discomfort bad taste in mouth decreased oral intake. Thrush is a fungal infection of the mouth. It can be a side effect of chemotherapy or treatment with antibiotics. People with dry mouth are also prone to getting thrush. It can appear as white patches inside the mouth especially on the tongue, roof of the mouth, back of the throat and insides of the cheeks. This may cause oral discomfort, a bad taste in the mouth and decreased taste which might discourage your loved one from eating. Doctors treat thrush with antifungal medications such as nystatin.

17 Strategies to help encourage good oral hygiene
assist with taking anti-fungal medication encourage fluids and keeping mouth moist encourage removal of dentures when medication is used discourage eating or drinking for 15 to 20 minutes after application. If caring for a person with oral thrush, you can assist them by: Encouraging good oral hygiene Assisting them to take antifungal medication prescribed by their doctor If your loved one wears dentures, make sure they remove them each time the medication is used and to avoid eating or drinking for at least 15 to 20 minutes after using this medication to avoid diluting it’s effectiveness

18 Vaginitis or Enteritis
wash bottom area thoroughly after every toilet visit may require salt baths if area becomes inflamed discourage sexual intercourse whilst these membranes are inflamed. These are areas of mucositis in the vagina and / or bowel. The perianal area may also become tender.

19 Nausea, vomiting and retching
nausea—feeling sick in your stomach vomiting—throwing up stomach contents retching—unproductive involuntary motion of vomiting Nausea is feeling the need to vomit, but not actually vomiting – usually puts people off their food Vomiting is the forceful expulsion of the contents of the stomach. Retching is the rhythmic spasmodic unproductive movement where the patient does not actually vomit. Usually any of these conditions cause fluid loss as the patient does not feel like eating or drinking. It may result in dehydration, low blood pressure, salt imbalances and malnutrition if the nausea/vomiting is not controlled. If the condition continues past 24 hours, you should call the hospital on the phone numbers you’ve been given, and prepare to take your patient in to be assessed.

20 Strategies to help education relaxation and stress management
previously useful strategies reduce smells and noises offer small frequent meals medications as prescribed. Some strategies that may help at home include: Relaxation & stress management – trying to take their mind off the nausea & feeling sick, especially before eating. Any strategies that have helped in the past, such as sucking ice, massage, getting outside into the fresh air. Reduce smells, noises that make it worse.  Avoid cooking smells – freeze meals Limit fried or spicy foods and excessive caffeine Cold foods are often better tolerated Take advantage of less nauseous times; have favourite food on hand A full stomach or empty stomach can exacerbate nausea – always have something in your stomach Small regular meals - Eat/drink ‘to the clock’ (eg: set alarm) - Eat slowly, chew well Drink liquids ½ - 1 hr before/after solids When you don’t feel like eating, sip on Dry ginger ale, Sports drink, Cordial, Fruit juice. If fluids are better tolerated, enjoy drinks full of calories and nutrients. Milkshakes are popular and by adding cream, fruit, ice cream, honey, you could make a meal of it. Try plain, dry foods such as biscuits, toast, popcorn, crackers Taking medications as prescribed – try not to let patient wait until feeling gets worse – should take medications as soon as feeling begins, or if prescribed regularly, then take them. Inform health professionals when strategies don’t work

21 Problems with eating dysphagia—difficulty swallowing mouth problems:
mucositis taste alterations Xerostomia—dryness of mouth oral thrush Cachexia weight gain from treatments anorexia—abnormal loss of desire to eat Dysphagia, mucositis, xerostomia and taste alterations can reduce food intake and promote weight loss. Xerostomia can cause problems with chewing and swallowing due to the loss of the binding and lubricating effect of saliva on food. A Speech Pathologist can help with eating, drinking and swallowing problems caused by cancer and cancer treatments. Cachexia - progressive loss of body fat and lean body mass caused by disease, side effects which can impair recovery Some treatments include drugs (steroids) which can increase the appetite, and/or cause some swelling from fluid. This is not really a problem as the weight should settle back down when these medications are stopped. The patient should be discouraged from trying to lose weight by not eating. The aim should be to maintain their weight during cancer treatment. Weight loss is not recommended for anyone receiving cancer therapy! If they are really concerned about weight gain, they could try increasing some gentle exercise, eg walking. Talk to the doctor or dietitian if the patient wishes to lose weight after cancer treatment has finished Anorexia-abnormal loss of desire to eat

22 Tips to avoid weight loss
small regular meals and snacks avoid too much fluids with meals nutritious high energy foods and drinks. Have small regular meals/snacks 5-6 meals per day Aim to have something every 2 hours Avoid drinking too much water/tea with meals Have nutritious drinks between meals Concentrate on high protein/high energy foods, see your dietitian for some nutritious recipes

23 High energy, high protein food

24 Constipation excessively hard and dry bowel movements often with abdominal and rectal pain may be from: reduced physical activity, lack of time or privacy for toileting, low amount of fibre and/or fluid in the diet complications of disease or treatment.

25 Strategies to help education—diet, perianal hygiene, relaxation, increase physical activity if possible watch for fatigue and weakness exercise—assist with mobility and daily routine as needed monitor intake and output and consult health professionals if problem continues. Ensure your loved one’s diet is high in plant foods and other high fibre foods (breads, wholegrain cereals, fruit and vegetables) which provide the fibre needed to help move your bowels. Ensure they drink plenty of fluids –water, juices, cordial, but limit caffeinated drinks as they dry a person out. It is important to drink 8 to 12 glasses of fluid per day. Gentle exercise is very important to keep the muscles going, and assist gravity to help bowels to move.

26 Diarrhoea increase in stool volume, frequency, or fluid content—different to usual pattern may be result of disease, infection, diet, treatment.

27 Strategies to help education watch for fatigue and weakness
assist as needed watch intake and output medications if diarrhoea does not settle, or pain, or change in contents—seek medical advice. Education – diet Avoid alcohol, caffeine, fruit juice, spicy food, fatty food, raw fruit and veg, nuts/seeds/legumes, artificially sweetened foods, Lactose (temporarily), Include in the diet - Small frequent meals, white/refined breads and cereals, stewed/tinned/puree fruit (max 2 serves), Sports drink to replace the fluid and electrolytes that you lose with diarrhoea Relaxation/distraction sometimes helps to take the patient’s mind off their problems Perianal hygiene – it is very important to keep the perianal area clean as infections can develop in little tears in the skin, and any acidity in the bowel motion may cause irritation of the skin. Watch for fatigue and weakness, - pain and excessive diarrhoea is very exhausting – persuade your patient to rest as necessary. Assist as needed with mobility and daily routines Watch intake and output – make sure the patient does not dehydrate – check the above list Medications – the medical staff will usually provide prescriptions if diarrhoea is an expected side effect. If diarrhoea does not settle – if the patient is having more than 8 motions a day, or pain, or change in contents – seek medical help

28 Blood changes—anaemia
Reduced amount of red blood cells circulating in the body which decreases the amount of oxygen in the system. Anaemia may cause a person to feel tired and short of breath

29 Strategies to help education—signs and symptoms, treatment plan, self-care strategies: nutrition patterns of activity and rest adequate sleep self-administration of any medications health professionals for blood transfusions as needed. Slight anaemia can still cause some fatigue – encourage your patient to rest as needed – don’t try to be active just because they think they should be. Do activities when feeling well. Consult your dietitian if your patient has low iron, as they can give advice on ways to increase iron in the diet. Plenty of protein foods, energy foods Health professionals will ask patient to have blood tests taken at certain times to check the blood counts.

30 Blood changes—neutropenia
white cells are part of the immune system. Neutrophils are one of the white cells health professionals watch the neutrophil count as a low count means the person is at risk of infection neutropenia is a low neutrophil count. If the level of white blood cells goes down, a person is more prone to infection because they have less ability to fight bacteria, viruses and fungal infections

31 Strategies to help education if friends/family ill—should not visit
strict hand washing and food safety no fresh flowers/plants wear gloves and a mask when gardening shopping check temperature consult health professionals. Both you & your patient should be educated by the health professionals about what to look for, and what to do when you are at home - signs and symptoms of infection, administration of G-CSF, when to ring hospital / health professionals If people have an illness - should not visit. Strict hand washing. Don’t go near fresh flowers/plants. If patient wishes to work in the garden, wear gloves & mask. May go shopping during quiet time of day – few people around the shops Check temperature twice a day and when patient does not feel well. Consult health professionals if temperature just under or over 380C Your dietitian will be able to provide you with food safety guidelines to ensure that good hygiene is a way of life!

32 Blood changes—thrombocytopaenia
low platelet count risk of bleeding.

33 Strategies to help see health professionals to check blood counts
may require platelet transfusion if the count is really low or if bleeding occurs avoid activities where cuts, bumps, scrapes may occur. Education – safety measures – take care not to bump themselves – watch for sharp corners; great care with sharp implements, signs of bleeding

34 Pain unpleasant sensory and emotional experience
may be actual or possible tissue damage pain is whatever the person who is experiencing it says it is, and exists when they say it does not everyone with cancer experiences pain.

35 Strategies to help pain relief
note pain that does not settle and report note when pain does occur note relief measures that work at times eating and drinking. Education Encourage your patient to take pain relief when ordered – don’t let pain get bad before doing something about it. It is always more difficult to settle when pain has become worse. Whilst pain is occurring, very low risk of addiction. Make a note about pain that does not settle and report to health professionals Note when pain does occur – what activities, time of day, etc Make a note about relief measures that you find work at times – hot / cold packs, massage, distraction, resting, being active Make sure your patient is eating and drinking

36 Alopecia Hair loss range in severity other sites
not all drugs cause this. Hair loss can range from thinning of all hair on the scalp, losing clumps, to complete loss of hair. Some people have all their hair, then go to wash it one day and it all just drops off. Other areas of the body including face, axilla and pubis, arms & legs may lose hair Not all drugs cause hair loss, only some – and this also depends on the dose being given, and the combination of drugs.

37 Strategies to help education wigs, scarves, hats, caps, turbans
hair regrowth may differ scalp care hat/head covering ‘Look Good Feel Better’ program—The Cancer Council Queensland— Education –it is likely for the hair to fall out (if it does) about 2 – 3 weeks after treatment commences, and may occur over a period of days, or all at once. Regrowth usually starts about 6 – 8 weeks after completion of treatment. The hair regrowth may differ from the original colour, and texture – it is usually very soft when it first grows back, and may be curly or straight. There are no diets or physical or pharmacological interventions that will prevent alopecia. Encourage your patient to discuss their feelings about this. Do they mind loosing their hair? Have they got a nice shaped head? Wigs, scarves, hats, caps, turbans. The social worker can help to organise a wig prior to treatment. It is easier to match at this stage, though your patient may wish to experiment with different colours and styles. Scalp care - gentle brushing, or combing, use of mild shampoos. Your patient should avoid having their own hair permed or coloured while they are having chemotherapy. Hat in sun, head covering when cold. – large area of bare skin looses heat quickly (like babies) Participate in programs such as “Look Good Feel Better” program – The Cancer Council Queensland

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