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Autologous stem cell transplant

Welcome

At Mater Private Hospital Brisbane, we acknowledge that being admitted to hospital can be a very stressful experience. This booklet aims to alleviate some of your concerns, in keeping with our Mission to offer compassionate, quality care that promotes dignity while responding to patients’ needs. It explains the general day-to-day events that may occur during your visit and the things to expect when you are discharged from the hospital.

It is, however, only a guideline as each person may require differing treatments.

If you have any questions about your treatment please ask your doctor or nurse.

Our pastoral care team also offers a caring support network to all patients regardless of religion. The dedicated members of this team are available at your request.

Things to bring with you into hospital

There are a number of items you may wish to bring with you to make your stay more comfortable. Comfortable pyjamas/clothing that will easily accommodate a central line (i.e. clothes that button up the front, tracksuits, etc) are ideal. Clothing must be changed daily and cotton underwear is preferred to reduce the risk of infection. A washing machine and drier are available for use in our oncology unit.

Washable scarves, hats, caps and wigs are all permitted. Hair loss begins the week following chemotherapy and is usually complete after a few days. Most people lose all of the hair on the head and most of the hair on the body. Sometimes, your eyebrows may be spared. You can bring in your own electric razor if it is clean and in good working condition. Use of a blade razor is discouraged due to an increased risk of infection and bleeding. Jewellery, other than a wedding ring, is best avoided during your hospital stay.

You may wish to bring a small amount of money with you to purchase such things as newspapers and magazines. A selection of newspapers and magazines are available at Chloe’s Coffee Shop, level 6, Mater Private Hospital.

Additional items you may wish to bring include:

• pictures, photos and posters to help individualise your room
• iPOD, CDs, hand held computer games or personal computers
• books, magazines, playing cards, puzzles and models
• stationery and stamps
• musical instruments
• your own new pillow or dacron doona.

Please do not bring any flowers, plants or fresh fruit as they increase the risk of infection

Day of admission

On arrival to the hospital staff will escort you to your room. The admitting nurse will orientate you to the room and facilities. If this is your first stay at Mater Private Hospital, you will receive a copy of the information booklet detailing the functions of the oncology unit. This contains important information for you, your family and friends. An armband will be applied to your arm, which stays on for the duration of your stay for identification and safety reasons. A detailed medical and surgical history will be gathered so that we can best plan your individualised care whilst you are in hospital.

Deciding to undertake a stem cell transplant can be a complex and difficult process. All Mater oncology unit staff recognise what a demanding time this is for you. We feel it is very important that your period of treatment should be as comfortable as possible. Our major goal is to ensure the success and safety of your transplant. If you, your family or friends have any questions, please bring them to our attention at any time. You may find it of assistance to write down any questions you have while reading this booklet.

Guidelines for visitors

We understand how important contact with your family and friends is for you as well as for them during your stay. However there may be times when the nursing staff will request visitors to leave (if there are too many visitors, or if they feel it is in your best interests). There may even be times when you do not wish to have visitors. Please let the nurse caring for you know your wishes, so they can organise limiting the number of visitors. We ask you to limit your visitors to two to three at any time and every person should wash their hands upon entry to the room.

It is recommended that any members of the family or friends who have a cold, flu or are unwell should not visit you, as a cold or flu may develop into a serious complication in a person having a transplant. If your potential visitors have been exposed to chicken pox, measles or other contagious diseases during the past three weeks, they should not visit you. If any children have been recently immunised they should also not visit. Please ask if there is any doubt over who should visit you.

Visiting hours for the oncology unit are from 8 am to 8 pm each day. We recommend that family members check with the nurse caring for you about the best time to visit based on your treatment plan. Please advise visitors not to send any flowers, plants or fresh fruit. It is helpful if one family member is designated to contact the unit for updates on your condition, and then share information with other family members and friends.

Caregiver responsibilities

We recommend that all patients who have a stem cell transplant have a designated carer. The following list gives the carer some idea of the responsibilities they will need to undertake:

• Making arrangements
  • tracking appointments
  • transportation

• Providing emotional support
  • being physically present
  • giving encouragement

• Providing physical care
  • identifying changes in the patient’s condition while at home
  • assisting in reporting patient’s symptoms
  • monitoring patient compliance in taking their medication
  • reminding patient to take medications at appropriate times
  • recording medications if requested
  • assisting with hygiene needs if appropriate

• Maintaining the home environment
  • cleaning
  • preparing food
  • acquiring medical supplies if needed

• Patient advocacy
  • gathering information
  • helping with decision making.

Carers may visit you in hospital at any time. Carers may stay as long as they feel is necessary. However it is also important for the carer to have some time out. We recommend that you develop a schedule of tasks. Some people like to develop a very complete schedule including a log book of activities, blood counts and medications. Please do so if this makes you feel comfortable. These may also help when to remind you of things you wish to talk about with your nurse or doctor.

“Taking care of the carer”

Carers are encouraged to take care of themselves through exercise, a healthy diet and adequate sleep. Some useful suggestions are listed below:

• listen to your friends, and be open to others and their suggestions
• let go, and know your limits
• learn relaxation techniques
• maintain a life outside your care giving role
• insist on some private time
• build a team of carers
• rely on your sense of humour
• appreciate your own efforts
• seek help when you need it.

Daily hospital routine

Tests/procedures

Daily blood tests will be taken to check your blood cells, liver, kidney function, bleeding studies and blood group. These tests are usually taken each morning from your central line or peripherally.

It is expected that there will be a steady reduction in all cell counts as the day towards transplant approaches. If the counts are low you may require blood or platelet transfusions.

If you develop a temperature and have been commenced on antibiotic treatment additional tests may be required (e.g. blood cultures, chest X-ray, urine and faeces cultures).

Consults

Your doctor may have seen you before your admission to hospital or they will visit you after you have been admitted. The doctor will discuss with you which of the above tests and procedures they are organising. Depending on your current level of health and past medical history they may ask for a number of doctors to see you. This may include a vascular surgeon to arrange for the insertion of a central line (if you do not already have one), cardiologist, respiratory or infectious disease physician. They will continue to visit you daily.

The dietitian will visit you initially to conduct a nutrition assessment and provide important information regarding your dietary requirements. You may also be visited by a physiotherapist if necessary.

Any counselling or support needs you or your family may have can be attended to by our advanced practice nurse.

Mobility

It is important that you maintain a certain amount of exercise each day during your stay. This may include walking or exercises in bed. There are also exercise bikes available for use if your doctor has approved this. For those people requiring assistance, your nurse will schedule this into your care or your family may wish to help. A physiotherapist may also visit you if required. See page 13 for further information on exercises.

Hygiene

Hygiene will play an important role during your stay and this is something you may do yourself. You will be required to shower daily with an antiseptic solution, chlorhexidine. Lotions, soap and/or creams must be new and unopened. Talcum powder and perfumed soaps are best avoided. Make up is discouraged because it masks rashes and possible signs of infection and your skin may be sensitive. It is advisable not to wear pierced earrings and contact lenses must not be worn, as these may increase the risk of infection.

The nurse will also give you mouthwashes to use (especially, after meals and before you go to bed). You will also need to buy a soft toothbrush. If you notice your mouth is sore or painful, notify your nurse and increase the frequency of your mouthwashes. A more detailed information sheet on mouth care will be given to you.

To avoid injury to the skin, men should use an electric razor to shave.

If you develop diarrhoea, strict hygiene to the anal area is important. An information sheet is available which provides helpful hints in managing this.

Nutrition

If you are on any special diets please let your nurse know. During treatment we encourage you to have a high protein diet to assist your body to cope with the chemotherapy treatment. An information sheet on nutritional support will be given to you. A decreased appetite, nausea, mouth ulcers and taste changes can be a problem during treatment. If this occurs the dietitian can alter your meals and arrange high protein supplements to assist you meet your body’s needs for protein and energy. You will be given an information sheet on nausea and vomiting as you may experience this sometime during your treatment. It will give you helpful hints on how to manage this. If you develop constipation you may wish to increase the fibre in your diet by eating prunes or drinking prune or pear juice. Whilst in hospital these can be ordered with your breakfast. All fluids taken orally will be recorded on the fluid balance chart. Following the stem cell transplant you will be placed on an immuno-suppressed diet (see Immuno-suppressed diet for more details).

Continence

If able, you may walk to the toilet. You will be started on a fluid balance chart, which will monitor both what you drink and your urine output. Depending on the chemotherapy drugs you are receiving, your urine may be tested for blood and pH. You will also commence on a bowel chart to monitor the frequency of your stools. Please let your nurse know if there are any changes in your bowel motion, frequency or consistency.

Observations

Your nurse will take a baseline set of observations on admission (blood pressure, temperature, pulse, respirations, height, weight and oxygen saturations). Your observations will continue to be taken every four hours during your stay. Your weight and oxygen saturations will be monitored at least once a day. If there is an increase in your weight you may be given an injection to remove any excess fluid.

Medications/infusions

After review by your doctor you will continue to take your regular medications. Your doctor may also commence you on medications which will help to protect your kidneys from the chemotherapy treatment you are about to receive. If you are showing signs of infection or if you have a temperature on admission, you may be started on antibiotics. If you have tested positive to past exposure to the cold sore virus or Cytomegalovirus (CMV) you may also be commenced on oral antibiotics.

Depending on your conditioning regime your chemotherapy may start between two and seven days before your stem cell infusion. You will also continue to receive at least two to three litres of IV fluids per day. Some people may develop a rash four to five days after commencing allopurinol. If this happens your doctor will cease the allopurinol. This will not affect the outcome of your treatment. If you are already on antibiotics these will be continued.

Once your chemotherapy commences, you will be started on antiemetics regularly to prevent and control any nausea and vomiting you may have. A side effect of one antiemetic (Zofran) is constipation. We will monitor you every day for signs of this and you may be given an aperient to avoid it.

You will be at most risk of infection following the stem cell transplant and may require platelet or red cell transfusions. Oral antibiotics and antifungal agents will be started in an attempt to avoid infection. Although precautions are taken to prevent infection, you may develop a fever at some stage and IV antibiotics will be commenced through your central line. You will continue on these IV antibiotics until the return of your counts. You may continue on regular antiemetics for nausea and vomiting until this symptom has resolved.

Granulocyte - Colony Stimulating Factor (G-CSF) is usually commenced 24 hours after the reinfusion of your stem cells and continues until your blood counts have returned. If you develop severe bone pain related to the G-CSF injections you may require simple analgesics to relieve this pain. Sometimes it requires a narcotic analgesic (such as morphine) to help alleviate the pain. This pain is a result of all the activity in the bone marrow producing the blood cells and usually occurs just before recovery of your peripheral counts.

Education/support

Stem cell transplantation may be a stressful time for you and your family. Anxiety and stress are a normal part of the stem cell transplant experience. Be assured that if you are feeling anxious or emotional that this is normal. You may sometimes feel teary, frustrated, or bored. Anxiety may also be experienced as physical symptoms such as a suspect stomach, sweaty palms, fast heart beat, shaking or flushed face. The emotions you experience and how you deal with them is an important aspect of your care. Remember that if you do become very anxious or agitated you are reacting in a very normal way to a very stressful experience.

The nursing staff are available to support you by providing as much information as you require. You will also be provided with a number of booklets to help you understand the treatment and stem cell infusion you are about to undertake. If you or your family are concerned, please speak to your nurse.

Prior to, during and after the infusion of your chemotherapy, the nurse delivering your treatment will explain to you the side effects and benefits of the drugs. Because you have already received chemotherapy treatments, you may already be aware of these side effects. The difference is that the chemotherapy drugs you are having are usually much larger doses therefore the side effects may be greater and your nurse will monitor you very closely.

If you or your carer have any questions you might like to write them down or ask your nurse when you think of them.

Treatments

Your central line will be monitored every four hours and observed for redness or swelling. If you have a portacath, the needle will be changed weekly on a Monday. If you have a central line, the dressing will remain intact and be changed weekly on a Thursday. Dressings to portacaths and central lines will occur more often if it is lifting off or if water has penetrated underneath. IV lines will be changed every Monday and Thursday routinely and bungs will be changed on Monday or Thursday with the dressing. Once the central line has been in for three weeks the suture around the Hickmans catheter will be removed and you will be taught how to care for your catheter yourself.

You will be shown how to tie a tape around your Hickmans central line which you will be required to wear at all times to take the weight of the IV lines. This prevents the central line from being pulled or falling out accidentally.

Stem cell transplant

There are three different types of transplant and it is very important you know which transplant you are having. Each transplant requires a source of stem cells. The stem cells may come from you, a family member or a “donor”. The type of transplant you will be having depends upon your disease and the availability of compatible stem cells. Therefore not everybody is eligible for each transplant. The three types are listed below and your doctor will be able to explain why you are having a particular type of transplant.

Transplant	Source of stem cells
Autologous	The patient
Allogeneic	A related or unrelated donor
Syngeneic	Identical twin

Chemotherapy treatment (days -7 to -1)

Once your doctor has confirmed that your transplant will be going ahead they will order the chemotherapy drugs. These drugs are given to you to eradicate residual malignant cells and to prepare space for new cells to engraft. Below is a list of chemotherapy drugs that are given to people receiving a stem cell transplant. How the drugs are given and the possible side effects are also listed. The chemotherapy may be given over one day or for several days. These drugs can be given in a variety of combinations and this will be decided by your doctor to best meet your individual needs. The chemotherapy is completely excreted from your body 24 to 48 hours after its completion.

Chemotherapy cannot distinguish between normal and cancer cells. Those cells dividing at a rapid rate within the body are more susceptible to the effects of chemotherapy. Normal cells most likely to be affected are the bone marrow (low blood counts), hair follicles, cells of the mouth, gastrointestinal tract, and reproductive system. The symptoms or side effects of the chemotherapy are directly related to the cells that are affected by the chemotherapy.

Drug	Method of administration	Side effects
Busulphan	Usually given over two to three days Given as tablets every six hours for eight to twelve doses	Bone marrow suppression (low blood counts) Mouth ulcers Infertility Lung toxicity Seizures in high doses
Carmustine (BCNU)	Usually given over one day Given as an infusion over two to three hours	Bone marrow suppression (low blood counts) Nausea and vomiting/anorexia Flushing of skin related to alcohol diluent Kidney toxicity Infertility Lung toxicity Changes in vision
Carboplatin	Usually given as an infusion over 20 hours over five days	Bone marrow suppression (low blood counts) Nausea and vomiting/anorexia Mucositis of the mouth Diarrhoea Hypersensitivity reactions Liver toxicity Kidney toxicity Fertility issues Neuropathies—sensory, confusion, hearing loss
Cyclophosphamide	Usually given as an infusion over one to two hours over two days	Nausea and vomiting Nasal congestion Mucositis Bone marrow suppression (low blood counts) Hair loss Haemorrhagic cystitis Cardiac— shortness of breath, irregular or fast heart beat (long term)
Cytarabine (Ara-C)	Usually given over four days Given as an infusion over two hours every twelve hours for eight doses	Bone marrow suppression (low blood counts) Skin rash or itching, sun sensitivity Nausea and vomiting/anorexia Diarrhoea Fevers Mouth ulcers Infertility
Etoposide	Usually given as a continuous infusion or infusion over one to two hours over four days	Bone marrow suppression (low blood counts) Low blood pressure related to rate of infusion Nausea and vomiting/anorexia Hypersensitivity reactions Skin and nail changes Hair loss Numbness, tingling of hands and feet
Fludarabine	Usually given as an infusion over 30 minutes over five days.	Bone marrow suppression (low blood counts) Mild nausea and vomiting/anorexia Lung toxicity Cardiac toxicity Headache, weakness, confusion and visual disturbances Numbness in hands and feet
Ifosfamide	Usually given as a continuous infusion over five days	Nausea and vomiting Nasal congestion Mucositis Bone marrow suppression (low blood counts) Hair loss Haemorrhagic cystitis Cardiac—shortness of breath, irregular or fast heart beat (long term)
Melphalan	Usually given over one day as a slow intravenous infusion over 25 minutes	Bone marrow suppression (low blood counts) Nausea and vomiting/anorexia Hypersensitivity reactions Infertility Lung toxicity Rash Hair loss
Thiotepa	Usually given over two days Given as an infusion over one to two hours	Bone marrow suppression (low blood counts) Nausea and vomiting/anorexia Infertility Hypersensitivity reactions Fever and headache

Supportive drugs

Drug	Method of administration	Side effects
Granulocyte - Colony Stimulating Factor (G-CSF)	Usually given as a subcutaneous injection under the skin daily commencing 24 hours after reinfusion of stem cells	Bone pain Fever Erythema or haematoma at injection site
Mannitol	Usually given as a short infusion prior to drugs such as carboplatin Mannitol is used to help increase the urine output during chemotherapy	Nausea/vomiting Local pain, inflammation at injection site Chills, dizziness Urticaria Hypotension/tachycardia
Mesna	Usually given as a continuous infusion starting 30 minutes before the cyclophosphamide over two days. Mesna is used as a protectant to the bladder lining.	Hypersensitivity reactions Rash

Reinfusion of stem cells (day zero)

Infusing the cells

Sometimes the doctor will want you to have a rest day between your high dose chemotherapy and the stem cells being infused, to ensure all the drugs have been excreted and will not harm the new cells. The day after the high dose chemotherapy has been completed, is usually when your stem cells will be reinfused through your central line. This is called Day zero. On the day of reinfusion, the stem cells will be removed from storage, and thawed in a bath of warm water immediately prior to reinfusion. The reinfusion takes 20 to 30 minutes. A number of people will be present throughout the reinfusion process including the nurse caring for you and laboratory staff.

Prior to the infusion you will be given a premedication to help minimise any reaction to the cells or preservative (known as DMSO) used when the cells were frozen. The preservative, DMSO, is excreted from the body via the lungs, so taking slow deep breaths during the reinfusion assists in minimising any reactions. These reactions vary from person to person.

Some reactions you may experience include:

1. coughing/shortness of breath or a heavy feeling in the chest—this is caused by the preservative (DMSO) and because the stem cells are still cold from the thawing process - this subsides once reinfusion is complete
2. strange taste sensation in the mouth (also due to DMSO) - you may like to suck on a mint to reduce this sensation
3. a distinctive sweet/musty odour on your breath, which will settle over the next few days.
4. flushing and headache—this will subside once the reinfusion is complete
5. nausea, which can sometimes lead to vomiting.

After the infusion

You may feel emotionally drained from the lead up to this big day and drowsy from the effects of the premedications so will probably want to rest for the reminder of the day.

It is important however to maintain your mouth washes and some sort of activity. The exercises listed towards the back of this booklet while resting in bed would be sufficient.

Your fluid balance will continue to be charted including your oral and IV intake and your urine will continue to be measured and recorded on the fluid balance chart.

Your weight will continue to be monitored at least once a day and reported to the doctor if there is an increase. Sometimes your body can retain certain fluids and you maybe given a drug called Lasix to help remove any excess fluid. This will not affect your treatment program.

After reinfusion of stem cells (days one to 14)

After the stem cell reinfusion, the stem cells find their way via the blood stream into the empty marrow space. Once they stick into the right places they begin to divide, multiply, grow and mature. Once these cells are mature they move out of the bone marrow into the blood stream. On average, the blood counts start to return 10 to 14 days after reinfusion. This is known as engraftment.

Before engraftment takes place, your blood cells will drop to a very low level. The aim of care at this time is to prevent infections developing and maintaining your red cells and platelet count. During this period some common side effects of the conditioning chemotherapy include:

• low blood counts
• diarrhoea
• nausea and vomiting
• mucositis
• infection and prevention of infection
• alopecia (hair loss)
• fatigue.

You will be given information sheets on these common side effects to refer to throughout the transplant process.

Discharge (days 15 to 36)

Essentially, you will be discharged from hospital when your blood cell counts return to safe levels and your general state of health is restored. This timeframe is different for everyone.

What to expect:

• You can expect to be discharged anywhere from day 15 to 36 after receiving your stem cells.
• You will visit HOCA on a regular basis until your cell counts have reached safe levels. This could be daily for up to one month.
• Once your cells are at the safe level you will need to return for doctor’s visits every few weeks (for up to three months) then once every two to three months (for up to six months). After this period, the visits may only be required every three months, and after one year you will return for annual testing.

Please note: this is only a guide, and may change according to your condition.

What to do:

• Continue to take your medications as ordered by your doctor.
• Maintain adequate fluid intake.
• Maintain your mobility at home.
• Take your temperature at least once or twice a day.
• Monitor and clean your central line looking for any redness or swelling.

Preventing infection:

• Avoid crowds, children you do not know, people who have had recent immunisations, and people with flu like symptoms or viral infections.
• Be conscious of hand washing particularly before eating in public places and before handling or preparing foods.
• Take your temperature daily or when you are feeling unwell particularly while your cell counts are low.
• Wear gloves when gardening (contact with houseplants is fine).
• Avoid excretion of animals (contact with healthy pets is fine).
• It is advisable to limit your number of sexual partners. Normal cleanliness should be observed.
• Avoid swimming in lakes, streams, swimming pools and hot tubs as bacteria in these areas may cause an immuno-compromised person to develop a life threatening infection.

When to notify your doctor:

Notify your doctor immediately if you notice any of the following:

• a temperature above 37.7 degrees
• nausea, vomiting, diarrhoea, stomach or intestinal cramping
• your mouth becomes drier, sensitive or develops ulcers or sores
• you have difficulty swallowing
• a drop in weight of more than one kilogram in one week
• lesions/rashes appear on your skin
• a cough
• have burning when passing urine
• redness, tenderness, swelling or drainage from your central line site.

Guidelines for daily living

This section along with the information you receive from the medical team will help you manage your care when you leave hospital and return home. Some patients who have come to Mater from rural areas may need to stay in Brisbane for a further two to three weeks following discharge until blood counts have returned to normal and no other complications have arisen. The community liaison nurse will help you arrange accommodation close to the hospital if required.

It will take several months before you have full strength and fitness. Persistent fatigue can be discouraging during this time but remember recovery is slow. Full recovery of the immune system takes about 12 months. The important point is to maintain your program of rest, exercise and nutrition to assist in your recovery.

Medications

You must continue to take your medication as prescribed and carefully read about the side effects and report any adverse reactions to your doctor immediately. Medications you may go home with include:

• Bactrim—this is a broad-spectrum antibiotic that will prevent infections such as pneumonia. You will continue to take this for several months after your transplant
• hormones—hormones may be prescribed to women who have premature menopause due to effects of chemotherapy.

Immunisations

After six months, patients can receive the following immunisations:

• Tetanus
• Diphtheria
• Influenza
• Hepatitis B.

The live virus vaccinations listed below can be given after one year:

• Measles
• Mumps
• Rubella
• Yellow Fever.

Please note: Oral polio immunisation should be avoided for life. You should not change nappies of babies given live viruses; however need not be isolated from family members given measles, mumps or rubella vaccines.

Hygiene

You should use a clean towel for your shower once at home and it should be washed at least three times a week, especially for the first three months following the transplant. You will need to make your own mouthwashes upon discharge, and therefore we recommend you purchase salt and bicarbonate soda (one kilogram packs) prior to coming to ater Private Hospital in preparation for discharge.

Skin care

• Note any changes in your skin and report to your doctor any colour change, rashes or change in texture (surface thickness).
• Sun exposure can activate conditions of the skin.
• Use SPF 15+ whenever in the sun and on exposed areas while driving in the car.
• Do not stay in the sun for more than 15 minutes and always wear a hat and long sleeve clothing.
• If your skin is dry, use oil in the bath and use lanolin based lotion or Aloe Vera. Do not use perfumed lotions, and try natural soaps.

Resuming your reconnection with life

Naturally, most transplant patients feel unsure and vulnerable when they first arrive home. It is important though not to push the panic button every time someone coughs or sneezes. It is also important for you to see your friends and family and return to normal activities of living - just use common sense—when in doubt: don’t.

Returning to work

This can be discussed with your doctor but usually it is suggested that you wait three months after your transplant before returning to work. Home tutoring or work in the home office can precede these dates.

Looking ahead

Some patients, especially those who have had a difficult transplant course, find it hard to make plans for the future. It is important to take your time to re-evaluate what you want for the rest of your life. There are many options, some you may never have thought possible, until now.

Just try to take one day at a time, be kind to yourself and be your own best friend. Following your rest, exercise and nutrition program will assist you to make those difficult and important decisions. Most of all, enjoy your new lease on life.

Immuno-suppressed diet

This diet has been designed to reduce the bacterial content of the foods you eat, whilst your body is prone to infection. Some foods normally contain or carry on their surface large numbers of bacteria. These bacteria are normally not harmful, however when your body’s defence system is weakened they can cause infections. There are several ways to reduce the bacterial content in food. These are things that we already do around the kitchen, but in these circumstances they need to be strictly followed.

An immuno-suppressed diet should provide a nutritious variety of foods. Being in a good nutritional state will improve your body’s coping abilities during treatment. If you are struggling to maintain a good intake, a dietitian is available to assist you.

Foods not allowed while on an immuno-suppressed diet

• raw grain products
• unwashed raw fruits, vegetables or herbs and all raw vegetable sprouts (alfalfa, mungbean)
• unroasted raw nuts, any nuts in shells
• unpasturised fruit and vegetable juices
• salads from delicatessens and self serve bars, pre-cut fruit salads
• raw or undercooked meat, poultry, fish, game or tofu
• meats and cold cuts from delicatessens
• cold smoked salmon and ready to eat prawns
• pickled fish or tempe products
• unpasturised or raw milk, cheese, yoghurt or other raw products
• cheese from delicatessens or cheeses containing chilli peppers or other uncooked vegetables, cheeses with moulds (e.g. blue), stilton and gorgonzola, brie, camembert, feta and farmers cheese.
• all miso products (e.g. miso soup)
• all uncooked or raw entrees
• tank water unless boiled
• cold brew tea made with warm or cold water
• un-refrigerated cream filled pastry products
• fresh salad dressings containing aged cheese (e.g. blue) Roquefort or raw eggs stored in refrigerated cases
• raw or unpasturised honey
• herbal or nutrient supplement preparations (refer to guidelines for use of herbal and nutrient supplements)
• brewers yeast if uncooked.

Important notes

• Avoid all food that has been opened and stored for longer than 24 hours in the refrigerator (three days is acceptable for milk and fruit juices).
• If you are having trouble managing the hospital diet, please speak to the dietitian for guidelines in the preparation and reheating of food. Generally foods from outside the hospital are discouraged.

Follow this diet for as long as your doctor and dietitian recommend. In general, the diet should be followed during the first three months after chemotherapy or transplant. In addition to this you should follow the food safety guidelines provided. If you have any queries about this diet or wish to have food from outside the hospital brought in whilst you are an inpatient please contact the dietitian for guidelines.

Food safety guidelines during and after transplantation

Bacteria and other pathogens may exist in common foods. The sources of food poisoning may be the food handler, the environment, or the food itself. The majority of these organisms occur at low enough levels to be of little risk to the average healthy person, but can be a major concern in patients undergoing high dose chemotherapy with stem cell transplantation and therefore the food they eat must be safe.

Safe food handling

• Keep food at safe temperatures, cook hot foods to a minimum internal temperature of 74 °C (for at least two minutes) and keep cold foods below 5 °C.
• Cook meats until well done; there should be no remaining pink. Red meats should be cooked to an internal temperature of 74 °C for at least two minutes.
• Thaw meat, fish or poultry in the refrigerator or microwave in a dish to catch drips. Use defrosted foods right away; never refreeze
• Never leave perishable food out of the refrigerator for more than one hour.
• Wash fruits and vegetables thoroughly under running water before peeling and cutting.
• Wash tops of canned foods before opening.
• During food preparation, always use a separate spoon for tasting.
• Never taste food that looks or smells strange.
• Cook eggs until the whites are completely hard and the yolks begin to thicken. The yolk should no longer be runny but need not be hard.

Microwave cooking

• Microwave cooking can leave cold spots in food where bacteria can survive. Rotate the dish or stir the food once or twice during cooking.

Grocery shopping

• Check the “use by” dates and choose only the freshest products.
• Check tinned goods are free from any damage, swelling, rust or dents. All packaged goods should be checked they are properly sealed.
• Select unblemished fruits and vegetables.
• Avoid delicatessen foods. In the bakery, avoid cream that is not refrigerated or custard containing desserts and pastries.
• Avoid foods from self-select, bulk containers.
• Avoid yogurt and ice cream products dispensed from soft-serve machines.
• Reject cracked, eggs and check the use by date.
• Purchase frozen and refrigerated foods last so that they do not defrost while you are shopping.

Dining out

• Ask that all your food is prepared fresh.
• Avoid high risk food sources: salad bars, delicatessens, buffets and smorgasbords, and sidewalk vendors.

Home sanitation

Personal hygiene

• Wash hands with soap and warm, running water before and after each step in food preparation (e.g. between handling raw meat and the vegetables).
• Wash hands before eating, after using the rest room, handling garbage, touching pets and gardening.

Work surfaces and kitchen utensils

• Use separate cutting boards (plastic or glass) for cooked and raw foods.
• Wash cutting boards after each use in hot, soapy water or in the dishwasher. Boards should be sanitised weekly using a solution of one part household bleach to ten parts water.
• Keep all appliances free of food particles. Check microwave oven, can openers, blender and mixer blades.

Sink area

• Have liquid soap available for hand washing
• Use paper towels for drying hands, and cleaning up spills.
• Replace dishcloths and dish towels daily, sanitising with disinfectant or bleach solution (one part bleach to ten parts water).

Refrigerator/freezer

• Maintain refrigerator temperature between 2 °C and 5 °C.
• Maintain freezer temperature below -15 °C.
• Never refreeze food once defrosted.
• Store all food in covered containers after cooling. First, cool hot foods, uncovered, in the refrigerator; cover storage containers after cooling. Make sure that covers seal tightly. Discard all prepared food after three days.

Activities with high risk for infection should be avoided for three months after autograft transplants and while on immuno-suppressing drugs (or 12 months) for allogeneic transplants. They include:

• touching human or animal excrement (e.g. nappies, cleaning up after animals, allowing pets to lick you, cleaning the aquarium)
• contact with soil, lawn wastes, compost, grass or logs, fertilising plants, gardening and changing flower arrangement water. There will be a time when gardening gloves may be worn, your doctor will tell when this safe.

Above all, washing your hands is still the most important measure you can take once you can perform these activities.

Exercise and fitness

It is very important to maintain mobility, and ultimately your fitness level, during your transplant phase.

Guidelines to follow when exercising:

• People who have undergone stem cell transplant report having good days and bad days. As a general rule, listen to your body.
• Do not exercise if you have a temperature that is 37.7 degrees or higher.
• All exercise activities should be performed smoothly and gently (no fast jerking or jarring of any joints).
• Stop exercising if you experience any heart palpitations or if you experience any pain, discomfort or difficulty breathing.
• If you have high or low blood pressure or your blood counts are low, avoid vigorous exercise. Gentle exercises done in the sitting or lying position are fine.
• If you are having investigations into your heart function or you have a history of heart problems, check with your doctor and physiotherapist before commencing an exercise program.

The three basic activities

1. Maintain a good posture: sit and stand tall, drawing your shoulder blades down and together at the back and gently drawing your tummy in. Avoid slouching. This can lead to neck and back problems. Standing tall with good posture makes you look good but also makes you feel better too.
2. Deep breathing: important for the oxygenation of all of the cells of the body. Deep breathing can also massage internal organs and gives you a feeling of relaxation. Take a deep breath through your nose expanding the rib cage, hold for a moment and let the breath out through your mouth. You could repeat this two to three times a day.
3. A walking program: walking is one of the best forms of exercise. It is low impact, which causes minimal impact on joints. Aim to walk for about 20 to 30 minutes, three to four times per week. While you are in hospital you can walk laps around the ward, or just walking to and from the bathroom if unwell will be of great benefit for a faster recovery.

Other fitness activities

Following are some exercises you might like to try.

Exercises performed on the bed

These are best performed lying flat with only one pillow under your head and no blankets or sheets over your legs.

1. Ankle pumping - pump your feet strongly but slowly up and down ten times.
2. Thighs tensing - tense the thigh muscles of both legs strongly (as if pushing the back of the knee into the bed), hold for a count of five, and relax. Repeat ten times. If this is easy progress to a straight leg raise.
3. Straight leg raise: lift one leg off the bed approximately 30 centimetres. Keeping your knee straight, hold it there for a few seconds, then lower. Repeat ten times with one leg, then ten times with the other.
4. Knee bends - bend each leg up and down by bringing foot up towards bottom. Try not to slide your heels along the bed. Repeat ten times each leg.
5. Bottom lifts - with knees bent, lift bottom up off bed, hold for a count of five and lower. Repeat five to ten times.
6. Side leg raises - lie on one side, lift leg sideways (try to keep hips forward, not rolled back too far). Repeat five to ten times for each leg.
7. Arm raises - push both arms upward towards the ceiling, then lower them down. Repeat ten times.

Exercises to be done while sitting

Try to sit out of bed as often as possible—it is much better than lying in bed all the time. When you sit aim for good posture with your bottom well back in the chair. Try not to slouch as this will lead to back pain.

1. Heel/toe raises - with feet flat on the floor first raise the heels leaving the toes on the floor. Lower feet to flat position then raise toes off the floor leaving heels on the floor. Repeat ten times.
2. Leg extensions - straighten each leg out and hold for a count of five then lower. Repeat ten times for each leg.
3. Marching on the spot - alternatively lift each leg up off the floor as if marching on the spot. Repeat ten times for each leg.
4. Arm elevations - lift both arms forward and above your head (take this gently on the side of your central line as it may pull). Repeat ten times.
5. Necks exercises (slowly and gently perform the following movements):
   • taking head gently forward (chin towards chest) and backwards (looking up at ceiling)
   • turning head towards left and then towards the right
   • with your head front facing, lower the left ear gently towards the shoulder and then right ear gently towards the right shoulder
   • with your head front facing, tuck your chin in as if making a double chin and hold to count five, then relax. Repeat five times in each direction.
6. Sit to stand practise - cross your arms so as you are not using your arm rests. Practice standing up from the chair and lowering yourself down gently again. This is particularly good for the thigh muscles. Repeat five to ten times.

Exercises to be done while standing

These exercises can be done standing behind a chair or somewhere you can hold on to steady yourself if necessary.

1. Semi-squats - hold onto back of chair for support. Semi squat down then straighten. Try to keep your back straight. Do not stick your bottom out. Repeat five to ten times.
2. Marching on the spot - if going for walks is difficult this is a good alternative. March for three to five minutes.
3. Calf stretches - holding onto your chair, stretch one leg back behind you, press heel down to floor until you can feel the gentle stretching of your calf muscle. Hold this position for five seconds. Do not bounce. Repeat five times for each leg.
4. Side leg raises - holding onto chair lift one leg out to the side hold for three seconds. Repeat five times for each leg.
5. Balance practice - some people who are having chemotherapy can become a little unsteady with their walking. This exercise aims to challenge your balance, which will help with your walking. Make sure there is something near you to steady yourself with. Lift one foot up and balance as long as you can. Repeat once for each leg.
6. Heel raises - hold onto back of a chair. Come up onto toes then gently down. Repeat ten times.

Should you have any concerns or questions regarding these or any other exercises please ask your nurse to contact the physiotherapy department or your doctor for a referral.

Most importantly enjoy yourself. Don’t think of it as a chore but a way to increase your mobility and further increase a speedy recovery.