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Chemotherapy side effects

Mater Private Hospital Brisbane

The largest of Mater Health Services’ private facilities, Mater Private Hospital Brisbane is a flagship for the level of care and facilities our organisation strives to provide.

The tertiary, acute facility is built on a foundation of clinical excellence and a commitment to safe, compassionate care, that is:

• quality focussed
• technologically advanced
• customised to patients’ needs and lifestyle.

Mater Private Hospital Brisbane is an outstanding health care provider with a total of 323 patient beds, 10 operating theatres, a 24-hour private emergency service, preadmission clinic, CardioVascular Unit, Intensive Care and Coronary Care Units, Breast Cancer Centre and Day Procedure Unit.

All rooms and facilities are designed to offer comfort and privacy, complete with a range of modern, air-conditioned accommodation.

While in hospital, patients also have access to allied health (dietitians, physiotherapists, etc.), a pharmacy, hairdressing and chaplaincy services.

For further information about Mater Private Hospital Brisbane, please phone 07 3163 1111.

Visiting hours

8 am to 8 pm (patient rest period 1.30 pm to 3.30 pm)

Our Mission

In the spirit of the Sisters of Mercy, Mater Health Services offers compassionate service to the sick and needy, promotes an holistic approach to health care in response to changing community needs and fosters high standards in health-related education and research.

Following the example of Christ the Healer, we commit ourselves to offering these services to all without discrimination.

Our Values

• Mercy—the spirit of responding to one another
• Dignity—the spirit of humanity, respecting the worth
  of each person
• Care—the spirit of compassion
• Commitment—the spirit of integrity
• Quality—the spirit of professionalism

This booklet aims to provide you with information on how to manage the common side effects that you may experience following chemotherapy treatment and/or as a result of your cancer. You may not experience all of these side effects and will be advised by your nursing team which ones are likely to occur, according to your treatment.

If you require any further information or assistance please speak to your nursing team at any time.

If you are at home, please call either Ward 8 South, Mater Private Hospital Brisbane on 07 3163 1552 (any time) or the Mater Private Centre for Haematology and Oncology on 07 3737 4500 (during office hours).

Alopecia (hair loss)

Hair is a part of the skin that is found on all body surfaces with the exception of the lips, palms of the hand, soles of the feet and nipples of the breast. The function of hair is to protect the surface of the skin, enhance tactile senses and provide body temperature regulation.

A single human hair consists of a hair bulb, hair root and hair shaft. Hair goes through phases of growth and rest which varies with age and body region. Because chemotherapy and radiotherapy cannot distinguish between cancer and normal cells, rapidly growing cells of the hair are at risk of being impacted.

Factors that increase the risk of alopecia

Everyone receiving treatment will not experience hair loss.

You are at risk of hair loss if you are:

• receiving radiotherapy, especially to the brain
• receiving the following chemotherapy drugs— Actinomycin, Bleomycin, Cyclophosphamide, Dactinomycin, Daunorubicin, Doxorubicin, Etoposide, 5-Fluorouracil, Hydroxyurea, Methotrexate, Mitomycin, Mitoxantrone, Melphalan, Paclitaxel, Vinblastine and Vincristine.

Radiotherapy treatment

Hair loss is usually seen in the area of the body being treated with radiotherapy. Depending on your dosage of radiotherapy, hair loss may be temporary or permanent.

Chemotherapy treatment

Hair loss may be partial (thinning) or complete (alopecia). Hair loss usually begins between 10 and 21 days after the commencement of treatment, with total loss expected in one to two months. Hair on your head is often lost first, but hair across your entire body can be lost. The normal patterns of hair growth continue and may see you experience hair regrowth even while you are still receiving chemotherapy; however your hair will usually start to grow again between six to eight weeks after completion of therapy.

Remember, prevention of hair loss is difficult and not always possible.

Things you can do:

• Obtain a wig and scarves before your hair begins to fall out.
• Wash your hair less frequently, using a mild shampoo and a soft bristle brush.
• Avoid the use of permanent hair colouring and hair sprays.
• Avoid excessive use of hair dryers, curling irons and heated rollers.
• Use a ski cap or other head cover to prevent heat loss in cold climates.
• Use a hat and sunscreen to protect your scalp from the sun.

Further information on wigs and scarves can be obtained from Hollywood Wigs and Queensland Cancer Fund Wig Library.

Low blood counts

Blood cells

Blood cells are produced in the bone marrow. There are three main types of blood cells produced by the bone marrow: red blood cells (RBCs), white blood cells (WBCs) and platelets. Red blood cells are responsible for carrying oxygen to the cells in your body, white blood cells are responsible for fighting infection and platelets help your blood to clot so you will stop bleeding if you are cut or bruised.

Blood cells are constantly dividing and being replaced. The average lifespan of a red blood cell is 120 days and seven days for platelets. Chemotherapy interrupts the growth and division of normal and cancer cells. The cells which divide at a rapid rate (platelets and red blood cells) are more susceptible to the effects of chemotherapy.

What is anaemia?

When you receive chemotherapy, your red blood cell count is affected, similarly to your other blood cells. Anaemia is the term used when there is a decrease in the number of red blood cells. Anaemia tends to develop more slowly because the average life span of these blood cells is 120 days. Other causes of anaemia are blood loss and cancer cells invading the bone marrow. Anaemia is identified through blood tests, and if you become anaemic you will be given a blood transfusion.

Precautions to minimise anaemia

• Achieve and maintain a well balanced diet high in protein
• Learn to pace activities across the day
• Balance exercise with rest periods
• Plan rest periods to help your body to recover

Signs and symptoms of anaemia

• Tiring easily, lethargy
• Dizziness
• Shortness of breath during exertion or at rest
• Palpitations

Please note: not all patients receiving chemotherapy will experience anaemia.

What is thrombocytopenia?

When you receive chemotherapy, your platelet count is affected, similarly to your other blood cells. Thrombocytopenia is the term used when there is a decrease in the number of platelets. However, due to the lifespan of your platelets their lowest point is usually seen during and after the lowest point in the white cell count. Your risk of bleeding is greatest at this time. A platelet transfusion can be given to maintain the platelet count at a safe level until your body is able to produce new cells.

Precautions to minimise injury

• Avoid injury to the skin—use an electric razor to shave
• Maintain good personal hygiene
• Have a daily shower and pat dry with towel
• Maintain regular mouth care—use a soft toothbrush and do not floss your teeth
• Apply direct firm pressure over bleeding sites until bleeding stops
• Take measures to avoid constipation
• Ask for antiemetics to control nausea and dry retching
• Avoid activities with the potential for physical injury
• Avoid forcefully blowing your nose
• Do not take aspirin or drugs containing aspirin as they alter platelet function

General signs and symptoms of bleeding (report any of these signs and symptoms to your nursing staff)

• New bruises or little red dots on your skin
• Bleeding of any type
• Severe headaches or blurred vision

Central venous catheters

While the development of central venous catheters (central lines) has improved the lives of people with cancer, it does present a number of challenges.

Types of central lines

There are a variety of central lines available for use. During your treatment you may require one, or a number of central lines depending upon your treatment plan. The types of catheters available may be grouped as short-term or medium to long-term, external or implantable, and may have a single or multiple lumens. The types of catheters most commonly used are listed in the following table:

Type of central line
Vascath	Short-term	External
Arrow	Short to medium term	External
Peripheral Indwelling Central Catheter	Short to medium term	External
Hickman's apheresis Hickman's	Long-term	External
Portacath	Long-term	Implantable

Why are central lines used?

Central lines are used for a variety of reasons which may include:

• people who have poor peripheral veins
• the type of chemotherapy to be administered
• the number of chemotherapy courses and duration of treatment
• supportive care required with antibiotics and blood products
• the type of treatment procedures (e.g. apheresis, stem cell transplant).

The type of central line chosen will consider these factors as well as preference from you and your doctor.

Management of central lines

At insertion

At the time of your central line insertion you will be asked to have a shower with an antibacterial soap. This can be done at home or on admission to hospital. Your doctor will advise you on whether you will need any intravenous antibiotics as a prophylactic measure. The central line has a dressing and this is usually changed after the first 24 hours.

Ongoing care of central lines

• Never immerse intravenous lines and the insertion site in water as this increases the risk of introducing organisms into the catheter.
• Each time your line is accessed, the bung must be cleaned and allowed to dry.
• The routine disconnection of intravenous lines from your catheter is not recommended as this increases the risk of infection and the potential for the catheter to become blocked.
• Lines are routinely changed on Mondays and Thursdays and where possible you will be given time to mobilise freely.
• At times your doctor may request the intermittent disconnection of your intravenous lines; however it is important to minimise this to only once or twice in a 24-hour period.
• The dressing should be changed immediately it starts to lift or becomes wet.

Type of central line	Central line care
Vascath	Secured in place with sutures Dressing weekly, unless lifting Flush daily as an in-patient and weekly as an outpatient
Arrow central line	Secured in place with sutures or statlock device Dressing weekly, unless lifting Flush daily as an in-patient and weekly as outpatient
PICC line	Secured in place with statlock Dressing weekly, unless lifting Flush daily as an in-patient and weekly as an outpatient Should not be used for blood sampling
Hickman's apheresis Hickman's	Tunnelled catheter, neck suture removed after seven days and exit suture removed after 21 days Ensure white tape is looped to Hickman's and fastened around the neck Dressing weekly, until suture removed Once suture removed you will be shown how to clean the exit site with persist plus after your daily shower Flush daily as an in-patient and weekly as an outpatient
Portacath	When accessed, flush daily When not accessed flush every six to eight weeks with heparin saline Once the suture line has healed, you may shower and swim when not accessed

Signs and symptoms of potential complications

When you have a central line you need to monitor your line every day for the following:

• pain, tenderness, or swelling at or around the central line insertion site
• any noticeable swelling of the arm or neck where the central line is situated
• a temperature greater than 38 degrees Celsius
• if sutures are holding your central line in place, check to ensure they have not been pulled out
• if the central line or portacath needle has been pulled or dislodged.

If you notice any of the above signs and/or symptoms, they must be reported to your doctor immediately.

Managing your care at home while on chemotherapy

In recent years it has become possible to allow people to go home directly after receiving chemotherapy or to even deliver chemotherapy to some people at home. However, chemotherapy can cause problems if it comes into contact with different parts of your body, or to others involved in your care at home (family, friends, volunteer workers or community nurses). Chemotherapy is also present in your body fluids (urine, blood, vomit, stools) during treatment and for seven days after you complete your chemotherapy treatment. Therefore there are certain precautions you and your carers can take to ensure a safe environment at home.

How chemotherapy is given at home

The most common way of receiving chemotherapy at home is by taking tablets (or capsules), or as an infusion into a vein using a pre-programmed pump.

Handling chemotherapy tablets (or capsules)

Chemotherapy tablets will be supplied in childproof bottles. These tablets should not be touched at any time. The required amount of tablets should be tipped into the medication bottle lid, and then into the medication cup. Chemotherapy tablets (or capsules) must never be broken or crushed. Holding the medication cup, place the tablets directly into the mouth and swallow with water. The medication cup should be washed in warm water and detergent while wearing disposable gloves. The medication cup should not be used by anyone else or for any other patient medication. The medication cup is to be disposed of with household garbage once the course of medication has been completed.

At home with a chemotherapy pump

Chemotherapy can be given at home using a pump that has been programmed at your hospital or clinic to deliver the drug at a set rate. This pump will be connected via tubing to a portacath, PICC or Hickman line (special devices placed into a vein by your doctor). If you experience any pain, burning, stinging, swelling or notice leakage at the entry site of your device while the chemotherapy is running, contact your hospital or clinic immediately.

Disposal of body fluids

It is safe to dispose of your bodily fluids (vomit, faeces, urine and blood) in the household toilet. Males should sit on the toilet when voiding to avoid splashing of urine. It is important to close the lid of the toilet and use a single full flush, after using it for either urine or bowel motions during treatment and for seven days after the completion of your chemotherapy. If you or your carer is disposing of bodily wastes from bedpans, urinals or vomit bowls into the toilet, then disposable gloves must be worn. Remember to wash hands thoroughly with soap and water afterwards. Clean the toilet as you normally would.

Cleaning up a cytotoxic spill

If a small amount of body fluid is spilt either on or around the toilet or floor, clean using this method:

• put on disposable gloves
• wipe up the spill with either flushable paper and dispose of it in the toilet, or with paper towelling or a disposable cloth and dispose of it with household garbage
• clean the area with water and detergent
• wash any cleaning equipment and rinse well after use
• dispose of gloves and cleaning materials by placing items into a plastic bag. Seal the plastic bag and then place into a larger (stronger) plastic bag before disposing of into your household garbage.

If you are receiving an infusion of a chemotherapy drug, and your nurse believes a large spill is a possibility, you will be given a ‘spill kit’ and clear written instructions on how to use it properly.

Care of contaminated linen

If any of your bed linen, towels or clothing becomes soiled with body fluids during treatment and for seven days after completion of chemotherapy, they should be washed immediately. Linen should be washed separately and no other uncontaminated clothes should be included in the wash cycle. They should be washed using the maximum running cycle for two wash and two rinse cycles using either hot or cold water. If the washing machine is not available at this time, place the soiled items in a sealed plastic bag for a short period of time until they can be washed. When handling contaminated linen, two pairs of powder free latex gloves should be worn and then disposed of with household garbage.

Disposal of waste

Small amounts of cytotoxic waste may be disposed of into household waste. Cytotoxic waste may include empty cytotoxic containers, gloves, materials used to clean up spills, ostomy bags, disposable nappies and dressings. These items must be placed into a plastic bag, sealed and then placed into a larger (stronger) plastic bag before disposal into your garbage. Any needles, syringes, ampoules or vials that have been used to deliver chemotherapy in the home must be placed into a dedicated purple sharps container which is labelled cytotoxic. The container will be supplied by your hospital or clinic if required. If you have items that are to be returned to the hospital, they should be stored in an area of your home that can be secured. When returning them to hospital, they should be sealed or tied properly and transported in the car away from passengers (e.g. the boot).

Cleaning of equipment

Bedpans, urinals, vomit bowls or any other equipment used to dispose of bodily fluids should be rinsed well with water after emptying. They should be washed with soap and water once a day. When performing any of these tasks, disposable gloves should be worn and then disposed of with household garbage.

Skin care

Chemotherapy can easily be absorbed through the skin and cause soreness, ulceration or other problems. Anyone who is required to handle the chemotherapy drugs or handle your bodily fluids should wear disposable gloves. If any of the chemotherapy or your body fluids come into contact with anyone’s skin (including your own), that person should wash the area well with soap and water. If any redness or soreness lasts more than an hour, contact your hospital or clinic. Any gloves used to handle these substances can be disposed of with household garbage.

Storage of chemotherapy drugs and supplies

Instructions for storage of chemotherapy drugs will be written on the childproof bottle. These medications must not be placed into other bottles from these containers.

They must be kept in a safe place where children, pets or any confused members of your family cannot reach them. Any unused medications should be returned to the hospital, clinic or pharmacy for disposal. If accidental ingestion of chemotherapy drugs occurs by any member of your family, ring the Poisons Information Line immediately.

Coping strategies and stress management

Cancer is a major life stressor, and it takes time to come to terms with what has happened to you. There are no rules about how to do this or how long it will take you to adjust to all the uncertainties and changes associated with your illness. Adjustment is a gradual process by which a person comes to terms with and copes with a stressful event and there are some basic tools to support you along the way.

Ways that we can support you

Your occupational therapist can support you and guide you to learn ways to manage your experience in the following ways:

• counselling—some people find it helpful to talk about their feelings and get them ‘off their chest’
• learning how to manage unhelpful or stressful thinking
• problem-solving, especially in relation to making difficult decisions
• learning effective ways to communicate
• learning strategies for improving sleep
• pacing your activities as you learn to manage fatigue
• education relating to stress—how it affects your body and mind and training to improve the way you manage stress
• assisting you to engage in meaningful and enjoyable activities
• learning how to better manage treatment side effects and maintaining an optimal quality of life
• assisting you to find your own unique coping strategies
• learning relaxation techniques.

Benefits of learning and using relaxation skills

Research indicates that relaxation is a valuable tool to assist with one or more of the following symptoms you may experience during the course of your illness:

• reduction in stress and anxiety
• pain management
• improved sleep
• improved concentration
• management of nausea
• increased sense of emotional well being and adjustment to illness
• management of fatigue and tiredness.

Tips for you

• be kind to yourself
• know your limits
• remember that it is OK to ask for help
• learn relaxation techniques
• have private time for yourself

Tips for your carer or loved one

• seek help when you need it
• know your limits
• learn relaxation techniques
• try to maintain a life outside your carer role
• have private time for yourself
• appreciate what you do

Constipation

Constipation refers to when you are unable to move your bowels, are moving them less often than usual or have to push hard to move your bowels. Constipation occurs when you exercise less or when you eat and drink less than usual. Some medications may also cause constipation. Keeping your bowel movements easy to pass is important.

Factors that increase the risk of constipation include:

• a decrease in the amount you eat and drink each day
• a decrease in your exercise or activity levels
• taking medications that cause constipation, e.g. pain relief medication such as Panadol or morphine, ondansetron and chemotherapy drugs (vincristine)
• cancer that causes pressure on your bowel or changes in the way your bowel works.

You can help prevent constipation by:

• drinking at least two to three litres of fluid each day (including warm or hot liquids)
• eating foods that are high in dietary fibre—wholemeal and whole grain breads and cereals, legumes (include the skins and seeds where possible), nuts and lentils, fruits and vegetables and prune and pear juice
• exercising daily. If this is not possible, tighten and relax the muscles in your abdomen and move your legs often while sitting or lying in bed
• taking medication (as instructed) to prevent constipation
• trying to move your bowels at your usual times
• speaking to your doctor or nurse about measures you have previously used to prevent constipation.

You can help manage constipation by:

• following the above preventive measures
• taking medications that offset any constipating side effects (e.g. Coloxyl and Senna or Movicol sachets) if you are taking other medications which cause constipation and slow the transit time through the bowel
• contacting a member of your health care team if your bowels have not moved within 48 hours
• avoiding the use of enemas or suppositories or manipulation of your stoma if you are immuno— suppressed.

Diarrhoea

Diarrhoea can be described as an increase in the quantity, frequency or fluid content of bowel movements. Diarrhoea is important to recognise and report because it can lead to dehydration and loss of important blood electrolytes (e.g. potassium). It is not always possible to prevent diarrhoea.

Factors that may trigger the risk of diarrhoea include:

• obstruction of the bowel
• infections, especially those in the gastrointestinal tract
• cancers of the gastrointestinal tract
• surgery to the gastrointestinal tract
• radiation therapy
• chemotherapy
• some medications.

Precautions to minimise/prevent diarrhoea include:

• reducing consumption of insoluble fibre (e.g. remove skin and pips from fruit and vegetable; limit seeded fruits and vegetables, stringy and course vegetables (e.g. celery, corn and peas) and grainy breads and cereals)
• increasing your intake of soluble fibre (e.g. high fibre white or rye bread, white rice, pasta, peeled potato and sweet potato, oats and porridge)
• reducing lactose if it exacerbates diarrhoea (found in milk and milk products)
• eating small, regular meals
• serving foods and liquids at room temperature
• avoiding coffee and alcohol
• limiting fats and spices
• increasing fluid intake
• using distraction or relaxation to help.

You can help manage diarrhoea by:

• increasing your fluid intake to prevent becoming dehydrated
• practicing good hygiene after each bowel movement by cleansing your perineal area with mild soap, rinsing thoroughly, patting the area dry and applying a skin barrier
• preventing infection by frequently washing your hands before and after meals and after going to the toilet, handling garbage and touching pets.

If you experience any of the following symptoms please speak to your health care team:

• constant and uncontrollable diarrhoea
• a stool which is “bloody”
• abdominal cramping
• fever.

Fatigue

Tiredness or fatigue is the most common side effect of cancer treatment. You may also experience fatigue as a symptom of the cancer. The degree to which an individual experiences fatigue varies greatly. Fatigue can interfere with your ability to work, concentrate, maintain your usual level of physical activity, and your ability to fulfil your role within your family.

Factors that increase the risk of fatigue

Fatigue can be experienced:

• following surgery as a result of direct tissue damage, as well as the effects of anaesthetics and analgesics
• during and after radiation treatment as a result of damage to both cancerous and healthy cells (which are constantly in the process of repairing themselves)
• during and after chemotherapy treatment despite the variety of chemotherapy drugs and doses given. The fatigue often peaks three to four days after the return of your blood counts.

Other factors such as pain, altered sleeping patterns, side effects of medications, bone marrow suppression and nutritional deficits may also contribute to fatigue. People who maintain their usual activities in addition to dealing with the demands of cancer treatment can experience fatigue as a result of expending too much energy.

Precautions to minimise fatigue include:

• establishing an exercise pattern of walking, low impact cycling or stretching several times a week. This can help in reducing symptoms of fatigue. Heavy exercise should be avoided
• setting priorities—plan on doing your most important activities first or when you are feeling the best (at times of peak energy)
• resting when you feel tired. Naps during the day, sleeping later in the morning or going to bed earlier at night may be helpful
• optimising sleep quality by avoiding long or late afternoon naps, limiting time in bed to actual sleep time, setting consistent time to lie down and get up and establishing a pre-sleep routine each night
• maintaining your usual lifestyle activities as much as possible, but pacing activities according to your energy level
• reducing or temporarily stopping your time at work or attending school while receiving treatment if your fatigue becomes too great
• delegating tasks to family members and friends—help with daily chores, shopping, child care or driving
• maintaining good nutrition, which will help your energy level. Additional protein and calories are needed to help your healthy cells repair themselves
• avoiding caffeine and stimulating activities in the evenings.

Keeping active while undergoing treatment

We all know that regular exercise has many benefits, however, when you are undergoing treatment for your cancer, exercise is even more important.

Unfortunately, treatment medication and bed rest can cause a significant decline in your muscle strength, bone density, mobility and other body systems. Keeping active during your treatment can help to significantly minimise these problems.

It is safe to exercise when you are having treatment —in fact, it is even more important than usual!

Performing exercise and activity during treatment can improve your outcomes. Exercise may:

• reduce the severity and length of nausea
• reduce the duration of neutropenia and thrombocytopenia
• reduce your fatigue
• reduce levels of anxiety and depression
• improve your appetite.

More generally, keeping active can:

• improve your heart rate, blood pressure and exercise capacity (cardiovascular fitness)
• increase your proportion of lean tissue to fat
• improve your self-esteem
• improve your bone density
• improve your quality of sleep.

What will my physiotherapist do?

• While you are in hospital a physiotherapist will assess your overall function and provide you with a personalised exercise program.
• You should complete your exercises daily.
• Your physiotherapist will then provide you with at least a weekly consultation to assess your progress, more regularly if you require further assistance.

What should I do?

• You should aim to exercise for 30 minutes each day. If able, you could gently increase this to 45 to 60 minutes per day.
• If you are not feeling well, try breaking up your activity into shorter sessions (e.g. three sessions of 10 minutes each).

What type of exercise is useful?

A combination of both aerobic and resisted exercise types is important to achieve the best results.

1) Aerobic exercises

Aerobic exercises are activities that gently raise your heart rate and your breathing. Activities that you can do on the ward include:

• brisk walking
• using the exercise bike

Make sure that you feel slightly puffed when doing your aerobic exercise—for example, when walking, aim for “late for an appointment” pace.

You might describe this level of exercise as a ‘light exertion’, or a ‘somewhat hard exertion’ (quite an effort, you feel tired but can still continue).

It should not be a ‘heavy’, ‘very heavy’ or ‘extremely hard’ level of exertion.

2) Resisted exercises

Resisted exercises improve your muscles and strength. Your muscles might feel tired during or after these exercises. Here are some exercises you can try:

Exercises performed on the bed:

These are best performed with no blankets or sheets over your legs. You should be relaxed and should not feel strain through your neck.

• ankle pumps—pump your feet up and down ten times each hour
• bottom lifts—with your knees bent, push through your feet to lift your bottom off the bed and hold for five seconds. Repeat five to 10 times
• leg raises—lock your knee straight, then lift your straight leg 15 centimetres off the bed. Hold for five to 10 seconds. Alternate legs and repeat 10 times
• arm raises—keeping your arms straight, lift them up above your head as you take a deep breath in. Lower as you breathe out. Repeat 10 times each hour.

Exercises performed while standing:

• sit to stand—stand up from a chair and sit back down again, without using your arms, to increase your thigh strength. Repeat 10 times
• mini squats—hold onto the bed rail and squat down as if you were sitting down about half way to a chair, pause, then straighten back up. Repeat five to 10 times
• heel raises—hold onto the bed rail and lift up onto your tip-toes, pause, then lower gently down. Repeat 10 to 15 times
• straight leg lift—hold onto a rail and lift one leg out behind you, keeping your knee as straight as possible and the rest of your body still. Repeat five to 10 times
• calf stretches—hold onto a rail and place one leg back behind you. Push your heel into the floor and feel a stretch in your calf. Hold the stretch for 10 to 15 seconds. Repeat five times on each leg.

What if I don’t feel well?

When undergoing treatment, it is common to have good days and bad days. It is important to remember that gentle activity can assist to reduce the length and severity of side effects to your treatment. Be aware that you might not be able to exercise at the same level every day, but try to do a gentle walk or some bed exercises even if you are not feeling well.

Your physiotherapist works with your haematologist/ oncologist and the nursing team and will modify an exercise program to a suitable level, considering your response to treatments.

Factors that can impact on the exercise you do include:

• fevers greater than 38 degrees Celsius
• low blood pressure
• irregular or fast pulse
• severe diarrhoea
• severe nausea and vomiting
• severe neutropenia with infections
• low platelet count (below 50)
• confusion
• low haemoglobin
• sudden onset chest pain or respiratory symptoms
• development of unsteady gait or a sensory peripheral neuropathy (changed sensation in your hands/feet).

If you are experiencing these symptoms, speak to your physiotherapist before continuing with your independent program. You may be advised to reduce your intensity of activity, limit particular exercises or stop exercise until the symptoms have improved.

Where can I receive further information?

If you would like further information or would like to talk to a physiotherapist during your treatment, please notify your nursing team or phone Active Rehabilitation Physiotherapy on 07 3163 1188 (office hours).

Throughout your cancer treatment you should strive to achieve daily exercise to maintain your fitness and weight

Prevention of infection

If you are a person receiving chemotherapy to treat your cancer, infections can be a significant side effect. The risk of you developing infections is related to the type of treatment you are receiving. Chemotherapy interrupts the growth and division of normal and cancerous cells. Those cells dividing at a rapid rate are more susceptible to the effects of chemotherapy. This includes your blood cells, and in particular white blood cells.

What is neutropenia?

Neutrophils are one type of white cell which forms part of the body’s frontline defences in fighting infection. Neutropenia is the term used when your neutrophils are very low. At this time, the risk for infection increases. You will find your neutrophil count reaches its lowest point seven to 14 days after treatment. The risk of infection is greatest at this time, and continues until the body is able to produce new cells. You may be given a drug that stimulates your white cells to grow. Your nursing and medical team will inform you of when you are neutropenic and need to take precautions.

Not all patients with neutropenia will get infections General signs and symptoms of infection include:

• fever (a temperature greater than 38 degrees Celsius)
• chills or sweats (rigors)
• mouth sores, pain on swallowing
• sore throat, cough or shortness of breath
• abdominal pain with or without diarrhoea
• nasal discharge or sinus tenderness
• redness, swelling or lesions on the skin
• difficulty with passing urine
• vaginal or penile discharge.

Please remember that chemotherapy can mask these signs and symptoms, making it difficult to detect infection. Often a fever is the only sign of infection in patients who are neutropenic.

Precautions to minimise infection

• Wash your hands using soap and water or an alcohol based hand rub after using the toilet, before handling food and eating.
• Where possible keep windows and doors into your room closed.
• Avoid fresh or dried flowers and plants as you may be exposed to certain types of infection. Advise your visitors not to send any flowers, plants or fresh fruit.
• Avoid contact with animal faeces, saliva, urine or solid litter box material. Wash your hands after any animal contact.
• Avoid direct or indirect contact with reptiles.
• Maintain good personal hygiene—shower daily and carry out regular mouth care (cleaning of the teeth and cleansing the lining of the mouth).
• Avoid injury to the skin as this may lead to infection. Promptly treat scratches, bites or other wounds that break the skin.
• Avoid gardening and wear shoes when walking outdoors.
• Avoid uncooked meats, seafood, eggs and unwashed fruits and vegetables.
• Store food items kept in your room in clean, sealed containers—refer to the immuno-suppressed diet sheet.
• Keep active with gentle exercise or walking
• Your nurse will take your temperature every four hours or more frequently if you have a fever, or if you are feeling unwell, faint or have chills.
• There may be a number of drugs that are commenced to protect you from certain types of infections.
• If you develop a fever, intravenous antibiotics will be given to support you until your white blood cells recover.

For your carers

• Request all your visitors to wash their hands before entering your room.
• Do not allow your visitors or carers to use the toilet facilities within your room.
• Advise your family and friends, including children who are sick not to visit, especially those with respiratory infections.
• Your carers should wear gloves if they need to handle flowers or plants, animal faeces, urine or solid litter box material. On completion they should remove their gloves and wash their hands immediately.

Please do not bring flowers, plants or fresh fruit into your room as they increase the risk of infection.

Mucositis

The healthy mucosa

The mouth and gastrointestinal tract is lined throughout with fragile tissues called mucous membranes. Alterations to the mucosal lining can lead to sources of infection. The oral mucosa includes your gums and skin on the interior of your mouth. It also helps salivary glands lubricate the mouth. Cells of the mucosa are replaced approximately every seven to 14 days due to wear and tear.

Chemotherapy treatment

Chemotherapy works by interrupting the growth and division of normal cells and cancer cells. Chemotherapy cannot distinguish between normal and cancer cells. The cells most susceptible to chemotherapy are those cells dividing at a rapid rate, which includes cells of the mucosa. As a result, the mucosa gets thinner and inflammation can occur. Problems usually occur seven to 14 days after chemotherapy commences and can continue for two to three weeks following the completion of your treatment.

Radiotherapy treatment

Radiation therapy causes inflammation to the mucosa if the treatment is near your mouth or gastrointestinal tract.

Problems usually become evident two to three weeks after the start of therapy. When the salivary glands of the mouth are affected by radiation therapy the mouth becomes dry. The lack of saliva results in erosion and abrasion of the teeth if they are not properly cared for during this time. During the first week of treatment you may have little or no symptoms at all; however during the second and third week you may begin to experience increased symptoms.

What is mucositis?

The cell destruction caused by chemotherapy or radiotherapy initiates an inflammatory response called mucositis.

Evidence suggests this is a multi-phase biological process and can occur simultaneously in different parts of the mucosal lining. While oral mucositis is the most observable, it is believed that a similar process is also occurring in the gastrointestinal tract. At this time the damaged mucosa is more susceptible to injury resulting in ulceration, infection and bleeding.

It is important to remember that not all people undergoing treatment will experience mucositis.

Factors that increase the risk of mucositis include:

• dental problems—dental cavities, gum diseases, full or partial dentures
• mouth infections—history of cold sores
• smoking and alcohol in more than moderate amounts
• suffering neutropenia (low white cell count)
• suffering thrombocytopenia (low platelet count)
• taking steroids.

Gastrointestinal mucositis

Prevention of gastrointestinal mucositis is difficult. Eating a bland diet low in fibre if diarrhoea develops may help prevent mucositis. Follow the tips on management of diarrhoea for further information.

Precautions to minimise mucositis include:

• checking your mouth each morning and evening for changes. Report any changes to your nurse
• using a soft tooth brush that is changed regularly. Allow your toothbrush to air dry before storing
• brushing all tooth surfaces for at least 90 seconds, twice a day
• flossing at least once daily if already doing so or as advised by your nurse/doctor
• rinsing your mouth at least four times a day with a bland rinse (normal saline or sodium bicarbonate) at least after each meal and before going to bed at night. Do this more frequently when your mouth is sore. To rinse your mouth, swish solution in the oral cavity for at least 30 seconds, expectorate fluid. You may wish to also gargle and rinse at the back of your throat
• keeping lips moist with petroleum jelly or similar to prevent cracking
• keeping your mouth moist with fluids
• avoiding spicy/hot foods, hard/coarse foods, acidic foods and alcohol and tobacco as they will irritate the oral mucosa
• avoiding loose or ill fitting dentures
• drinking one to two litres of fluid each day, which helps to keep your mouth moist and clean.

If you are receiving either bolus Melphalan or 5-Fluorouracil, you will be encouraged to hold ice or ice water in your mouth for five minutes prior to the infusion, during the infusion and for 30 minutes after completion of the infusion. The aim is to vaso-constrict the blood vessels of the mouth, and therefore reduce the severity of the oral mucositis caused by these agents.

Signs and symptoms of oral mucositis

Early indications include:

• your mouth and gums or throat may feel sore or different
• sensations of dryness and burning
• white or yellow film over mucous membranes
• slight pain in your mouth or throat.

Late indications include:

• red inflamed areas
• the presence of ulcers/cold sores/bleeding
• pain—especially when eating, drinking or talking.

To maintain good oral hygiene, follow these tips:

• brush your teeth with a soft toothbrush after meals and before bed at night
• always store your toothbrush after it is dry
• use the mouthwashes regularly
• remove dentures and clean them and your gums before reinsertion
• avoid commercial mouthwashes which may irritate and aggravate symptoms.

Mouthwash recipes

• Normal saline—one teaspoon of salt to one cup of warm water

Sodium bicarbonate—one teaspoon of sodium bicarbonate to one cup of warm water

Remember: good mouth care is very important and you should practice good care prior to the onset of symptoms.

Nausea and vomiting

Great progress has been made in the prevention and treatment of nausea and vomiting. Some patients may experience little or no nausea and vomiting. The degree to which you experience nausea and vomiting will depend on the treatment you receive and how long the treatment continues. You will be given anti-nausea medications to prevent nausea and vomiting. These medications will start when your chemotherapy starts and will continue until your nausea is resolved. At times you may still develop nausea and vomiting despite the prophylactic antiemetics you have been given. It is important to report any nausea or vomiting to your nurse. Other medications can be used to treat your symptoms of nausea and vomiting. Some people experience delayed nausea and vomiting, after the chemotherapy is finished, and therefore will have prolonged anti-nausea treatment.

Factors that may trigger nausea and vomiting include:

• chemotherapy agents
• radiation therapy
• persistent pain
• kidney and liver function
• some medications
• infections, especially those in the gastrointestinal tract.

Precautions to minimise/prevent nausea and vomiting include:

• using oral and intravenous antiemetics are both effective
• always taking your prescribed antiemetics for the period of expected nausea and vomiting—before it starts (anticipatory phase), during the treatment (acute phase) and for a period of two to four days after (delayed phase)
• taking antiemetics prior to meals so that the effect is present during and after meals
• eating smaller regular meals and maintaining good fluid intake
• reducing food aromas and other stimuli with strong odours
• using previous measures, consume foods that minimise nausea and that are comfort foods
• avoiding very sweet, salty, fatty or fried foods if it makes your nausea worse
• snacking on dry crackers as sometimes an empty stomach makes nausea worse
• avoiding eating one hour before and after chemotherapy
• wearing loose fitting clothing
• using distraction or relaxation to help
• keeping your mouth clean and moist (drink regularly)
• not lying down after eating, but sitting for half an hour
• using a diary to record the effect of medications and when nausea and vomiting occurs

Other interventions that maybe used in conjunction with your medications which may provide benefit include:

• acupressure
• guided imagery
• music therapy
• progressive muscle relaxation
• counselling and support.

Prevention is the goal: it is easier to control nausea and vomiting before it starts.

How to manage nausea and vomiting

At some stage during your treatment, you may not feel like eating and drinking. Do not be concerned by your lack of appetite, as it is not unexpected. Eat and drink as much as you are able. If you don't feel like eating, please try to keep drinking. You must report to your nurse or doctor what you are eating and drinking at home. Small light meals are generally better tolerated, and your dietitian can assist you in obtaining an appropriate choice of foods. There may be a time when, in the interest of your medical condition, your doctor recommends cessation of eating and drinking for a short time. You will be weighed before commencing treatment and on a regular basis during treatment (this may be daily at times).

If you experience any of the following symptoms please speak to your health team:

• constant nausea and vomiting
• blood stained vomit
• inability to take tablets due to nausea or vomiting once taken
• severe stomach pain while vomiting.

Nutritional support

A healthy diet is required to provide the body with adequate nutrients, protein and energy required to repair and replace damaged tissues and cells. The treatment you receive for cancer can often damage healthy as well as diseased cells.

Optimal nutritional status is important to assist the body to maximise the benefits of chemotherapy and radiotherapy, which are the common treatments for cancer. Adequate nutrition is also required to maintain your immune system.

Cancer and its treatments generally increase the body's requirements for protein and calories. Therefore, it is essential that your dietary intake of these nutrients is increased to assist the body to maintain lean muscle mass and body weight within the healthy weight range.

Factors that increase the risk of problems

You may have problems meeting your nutritional requirements if you:

• have cancer of any type, in particular cancer of the gastrointestinal tract, head and neck area
• are having radiotherapy to the head, neck, chest, or abdomen regions for any length of time
• are having surgery to the head, neck, chest, or gastrointestinal tract
• are having chemotherapy for any length of time.

Commonly encountered problems during cancer treatment may include:

• loss of appetite
• weight loss
• mucositis
• nausea and vomiting
• chewing and swallowing problems
• dry mouth
• taste changes
• constipation and diarrhoea
• indigestion and heartburn.

If you experience any of these side effects or if you are losing weight, please ask your nurse to contact a dietitian, who will be able to assist with appropriate food choices and symptom management.

Precautions to minimise nutritional problems include:

• drinking at least two to three litres of fluid per day to keep your body well hydrated
• including nourishing fluids regularly, e.g. milk, juice, cordial or soft drink (tea and coffee are not included as nourishing)
• eating small frequent meals and snacks
• maintaining adequate bowel function
• taking regular anti-emetics if you are feeling nauseated or vomiting
• keeping your mouth moist and clean.

Remember, a hospital dietitian is available to assist you.

Peripheral neuropathy

What is peripheral neuropathy?

Sometimes cancer treatment can cause damage to your nervous system. This is referred to as neuropathy (new- RAH-path-ee). It can also be called chemotherapy induced peripheral neuropathy or CIPN for short. The nervous system is divided into two distinct sections: the central nervous system which consists of the brain and spinal cord, and the peripheral nervous system which are the nerves that control the sensations and movements of our arms and legs. These include three main groups; sensory, motor and autonomic nerves:

• Sensory nerves receive sensations such as heat, pain, touch or vibration
• Motor nerves control how our muscles move and keep us balanced
• Autonomic nerves control functions such as blood pressure, heart rate, gut, bowel, bladder and erectile function.

CIPN symptoms can start as soon as the first cycle of chemotherapy begins or weeks to months after cancer treatment is completed. This is referred to as "coasting".

ALERT: It is important to tell your doctor or a member of your health care team immediately if you experience any signs or symptoms of CIPN.

What are the symptoms of CIPN?

Neuropathy symptoms and their severity depend on which nerves are damaged and how many nerves are affected. The degree of severity varies from person to person. Symptoms normally start in the longest nerves, in the feet.

CIPN normally affects both sides of the body equally, and symptoms normally start in the toes and fingers first and gradually spread upwards. The most common symptoms are:

• numbness and tingling "pins and needles" in your feet and hands, or a "stocking-glove" effect
• trouble holding or picking up things
• trouble buttoning clothes
• a burning pain, particularly in feet
• sharp, jabbing or electric-shock like pain
• weakness
• loss of balance
• falls
• increased clumsiness
• increased sensitivity to temperature changes (cold causes burning pain)
• loss of sensation (can't tell hot from cold)
• extreme sensitivity to light touch
• jaw pain
• dizziness
• constipation or urinary incontinence
• trouble hearing
• a ringing or buzzing noise in your ears
• symptoms impacting on daily function.

What chemotherapy drugs cause CIPN?

Some chemotherapy drugs are more often linked to increasing the risk of CIPN. Not all people who are receiving these treatments will develop symptoms. However, you are at risk if your treatment includes:

• Bortezomib (Velcade)
• Platinum drugs (Cisplatin, Carboplatin and Oxaliplatin)
• Taxane drugs (Paclitaxel and Docetaxel)
• Thalidomide
• Plant Alkaloid drugs (Vincristine, Vinblastine, Vinorelbine, and Etoposide)

Other causes of CIPN

There are a number of other factors that can increase the risk of developing peripheral neuropathy. These factors include:

• diabetes
• alcoholism
• vitamin deficiencies (B12)
• previous cancer treatments
• pre-existing peripheral neuropathy
• HIV/AIDS
• tumour pressure on a nerve
• Charcot-Marie-Tooth Syndrome (rare genetic neuropathic degenerative disorder).

Speak to your doctor or nurse if you have any questions regarding your medical history.

Is there any treatment for CIPN?

Peripheral neuropathy may last for a short time (reversible) or it can become a long-term (chronic) condition. This can depend on a number of factors, including:

• age—generally, risk increases with age
• pre-existing high risk medical conditions
• a family history of neuropathy syndromes
• the drug or combination of chemotherapy drugs used during treatment
• the dose of the chemotherapy drug
• the total dose of chemotherapy that was given over the total time of treatment
• the length of time during which the chemotherapy drug was administered.

The overall care of patients with CIPN is prevention, restoring function and symptomatic treatment. Physiotherapy, occupational therapy and control of neuropathic pain are included in this care. Pain management treatment includes:

• tricyclic antidepressants
• anticonvulsant medication
• narcotics/opoids
• steroids
• massage and relaxation therapies
• occupational and physiotherapy support
• exercise.

Will I continue treatment if I get CIPN?

Your doctor and health care team will need to know if your chemotherapy treatment is causing any neuropathy. Ongoing assessments of your peripheral nerve function will be undertaken, and a 'stop and go' approach may be used. Treatment may be stopped and put on hold, with lower doses and longer administration times of the chemotherapy drug being reintroduced once symptoms resolve.

Managing CIPN

• Be careful when using knives, scissors and other sharp objects.
• Make sure you can feel car pedals when driving.
• Avoid falling, if possible—walk slowly and hold onto handrails; keep rooms well lit; use a non-slip bathmat or a shower chair; use a walking aid as advised by a physiotherapist; and remove any rugs, mats or cords that you could trip over.
• Protect your hands and feet—wear comfortable shoes that fit over your instep and have a treaded sole; wear shoes inside and outside your home; wear gloves when doing household duties; wear gloves and warm socks in colder conditions; and keep your hands and feet moisturised.
• Avoid constipation—drink two litres of water a day; make sure you have a diet that is high in fibre; use stool softeners if prescribed by your doctor; speak to a dietitian who can provide advice about which foods to include in your diet.
• The use of assistive devices for dressing, using utensils, writing or other vocational activities may be recommended by your occupational therapist.
• Use a thermometer to check water temperature and avoid scalding burns. Adjust hot water setting if possible.
• Allow yourself time to rest.
• Ask for help.

Therapeutic diets

You may be commenced on a therapeutic diet while you are in Mater Private Hospital Brisbane to ensure your diet best suits your needs during treatment and recovery. Please select from the menu as per your preferences. If you are currently following a special diet, or have any concerns regarding your therapeutic diet, please ask your nurse for a meeting with your dietitian.

The following are a list of some common therapeutic diets used within the haematology and oncology unit:

• high protein: helps to nourish and build/repair body tissues during treatment and following weight loss and surgery
• immuno-suppressed: based on the normal diet with additional food safety precautions and modified food choices
• low fibre: aims to help in the control of ongoing severe diarrhoea (may be required following some types of chemotherapy treatment which inflame the lining of the bowel, surgery or a bowel obstruction)
• lactose free: a diet with lower amounts of lactose (natural sugar found in milk and most milk products) which may help reduce profuse diarrhoea
• sugar free/diabetic: aims to keep blood sugar levels stable within the target range and moderately low in fat for heart health
• texture modified diet +/- thickened fluids: your speech pathologist may have recommended a texture modified diet which is safest and most suitable for your current needs
• low carbohydrate: this diet is used for the meal prior to fasting before a PET/CT scan. It provides very minimal carbohydrates, which assists with the accuracy of the results.

Remember, the hospital dietitian is available to assist you, if required.

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