Dietary advice for haematology patients with neutropenia

Dietary advice
for haematology
patients with
neutropenia
For anyone
affected by
blood cancer
bloodwise.org.uk
Patient
information

A note about this booklet
This booklet has been produced by Bloodwise, the new name
for Leukaemia & Lymphoma Research. We’re a specialist UK
blood cancer charity and produce high quality patient information
that’s designed for and with patients, in collaboration with health
professionals.
We’ve updated the cover for this booklet so it shows our new name, but
the information inside was produced in July 2013. We’re currently reviewing
the content in this booklet and when it’s ready we’ll re-issue it, signifying
that the content is medically accurate and as up-to-date as possible.
Until it’s ready, we’ll continue to send out this version of the booklet, so
you can continue to receive the information you need. So from time to time
you may see our old name mentioned in the booklet, or find that some
website links don't work.
We hope to publish the updated version in 2016. For more details about
this, or our patient information more broadly, please contact our patient
information team.
› information@bloodwise.org.uk › 020 7504 2200
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If you, or someone close to you, has been diagnosed with a blood cancer or
related condition, we understand that this can be a time of great uncertainty
and confusion.
Having access to reliable and clear information at this time is an important
step towards understanding your condition and we hope that this booklet will
answer many of the questions you may have.
This booklet is one in a series of booklets we produce, which are written in line
with national guidelines where possible.
Our booklets provide general information about the topics they describe.
In many cases the treatment of individual patients will differ from that
described in the booklets. Patients should always rely on the advice of their
specialist who is the only person with full information about their diagnosis
and medical history. This booklet is not a substitute for dietary advice given
by a Registered Dietitian.
MY DETAILS
Name/hospital no. /
Diagnosis
Consultant
Contacts
• Key contact
• Haematology ward
• Haematology clinic
• Dietitian
Notes
For further information, please contact the Patient Information team on
020 7504 2200.
We would like to acknowledge the contribution of the Patient Information
Review Group and the Haematology Subgroup of the British Dietetic
Association Oncology Group for patients who may be at risk of food-borne
infection because of high-dose chemotherapy and/or bone marrow or stem
cell transplants who have produced this booklet. The information may not
be appropriate for people receiving treatment for solid tumours.
The information contained in this booklet is correct at the time of going to
press (July 2013). Planned review date July 2015.
Leukaemia & Lymphoma Research, 39–40 Eagle Street, London WC1R 4TH
T: 020 7504 2200 E: info@beatingbloodcancers.org.uk W: beatingbloodcancers.org.uk
© All rights reserved. No part of this publication can be reproduced or transmitted
without permission in writing from Leukaemia & Lymphoma Research.
Registered charity 216032 (England & Wales) SC037529 (Scotland)
ISBN 978-0-9573064-4-8
3

INTRODUCTION
We hope that you find this booklet helpful. It is one in a series that
we have written for people affected by a blood cancer, or related
condition. The full range of our booklets is listed on the back cover.
Hearing that you or someone close to you has just been diagnosed
with a blood cancer or related condition can be a total shock, and
devastating. You may feel overwhelmed and confused and there may
be many questions that you want to ask: Why me? What types of
treatment are there? What is right for me? What are the side effects?
What will I be able to do? What does the future hold? How and where
can I get the help I may need? Where can I go for more information?
In our booklets we try to provide you with some of the answers and
also let you know about other organisations you may like to contact.
Around 30,000 people of all ages are diagnosed in the UK with
a blood cancer every year. Our charity, Leukaemia & Lymphoma
Research is the only UK charity dedicated to improving the lives of
all those affected by blood cancers, including leukaemia, lymphoma
and myeloma. Each year, we invest over £20million in improving
the lives of patients and bringing us closer to our vision of beating
blood cancer.
CONTENTS
My details 3
Introduction 4
Introduction to neutropenia 6
Food safety 8
Food safety advice if your neutrophil
count is below 2.0 x 10 9 /litre 12
Further food safety advice for a
neutrophil count below 0.5 x 10 9 /litre 14
Dietary advice after your stem
cell transplant 16
Poor appetite 17
Help and support 20
Feedback form 22
Please do get in touch if you would like more information about us or
if you would like to speak to someone in our Patient Information team.
We would welcome your feedback on our information booklets as we
want to ensure they are as helpful as possible.
Please use the form at the back of this booklet or go to
beatingbloodcancers.org.uk/bookletsurvey
4 5

INTRODUCTION TO NEUTROPENIA
After chemotherapy, if you have a blood cancer or related condition,
you may be at a greater risk of infection from bacteria or fungus in
foods. This is for three reasons:
• The white blood cells (neutrophils) that would usually fight food
poisoning bacteria are at a low level. This is called neutropenia.
• The gut lining, which acts as a barrier between bacteria and the
bloodstream, is damaged by chemotherapy and radiotherapy. This
makes it easier for bacteria to cross this barrier.
• The immune system is more likely to be affected for people with
a blood cancer and so they are at greater risk of infection.
Your doctor or nurse can tell you what your neutrophil count is so
that you know which advice you should follow, both in hospital and
at home. Please note that the level of restriction required may depend
upon your clinical condition and you will be given appropriate advice.
After a bone marrow or stem cell transplant, or when on treatment
which suppresses your immune system, you may need to continue
following these guidelines even after your neutrophil count has
recovered. This is because your immune system is weaker and you
continue to have a higher risk of infection. If you have any questions
about this diet or eating in general, please talk to your doctor or
nurse specialist, who can refer you to a dietitian for specialist
assessment and advice.
Neutropenia means that neutrophils, which are one type of white
cell, are at a low level and you are therefore at greater risk of
food poisoning.
The advice in this booklet will help you to avoid infection, while still
having as varied a diet as possible. It also gives general advice on safe
food handling and storage for all patients at risk of neutropenia. You,
and your family and friends, should follow this advice at all times. It
lists some foods that you should avoid where possible.
There is no single agreed definition of either neutropenia or severe
neutropenia. The levels quoted in this booklet are very widely
used but if your doctor uses different levels, you should be guided
by those. The type of advice you should follow depends on the
number of neutrophils in your bloodstream: this is known as the
neutrophil count.
There is separate advice for people with a neutrophil count of below
2.0 x 10 9 /litre and those with a neutrophil count below 0.5 x 10 9 /litre.
6 7

FOOD SAFETY
General advice
Shopping
• Avoid buying food with damaged or broken packaging.
• Do not buy food from fridges or freezers that are overloaded as
the food may not be cold enough.
• Buy foods in small, individual packets. Avoid large packets
that will be open for longer and increase the chance of bacteria
contaminating them.
• Buy chilled and frozen foods last and get them home as quickly
as possible. If it is not possible to get food home immediately,
an insulated container or cool bag can help to keep food at the
correct temperature.
• Always check use by dates on packaging.
• Avoid shops where raw and cooked meats are stored in the same
fridge or in a deli counter without a separating wall. Where possible,
buy pre-packed deli items.
Storage
• Keep your fridge between 0°C and 5°C.
• Keep your freezer below -18°C. Always make sure that food is still
frozen solid when you take it out of the freezer.
• Store cooked food at the top of the fridge.
• Store raw or defrosting meat or fish at the bottom of the fridge in
a covered container to stop it dripping or leaking into the fridge.
• Do not overload your fridge or freezer as this will increase
the temperature.
• Keep eggs in the fridge.
• Use and store food following manufacturers’ instructions and
within best before or use by dates.
• Never refreeze thawed food.
USE BY : OCT 12
Food preparation
• Always wash your hands with warm water and soap before
preparing food.
• Wash your hands after going to the toilet, sneezing and after
touching pets, hair, dirty washing, rubbish, ready-made or raw food.
8 9

• Use a separate towel or use kitchen paper to dry hands. Do not use
a tea towel.
• Cover any cuts and grazes with a waterproof plaster.
• Keep pets away from work surfaces, food and your dishes.
• Make sure any cloths or sponges are regularly bleached, disinfected
or changed.
• Avoid cross-contamination of food by changing or washing
chopping boards and utensils between raw and cooked food.
Ideally you should have three boards; one for raw meat, one
for cooked meat and one for other foods. You may find it easier
to have different coloured chopping boards.
Cooking
• Thaw meat and poultry in the fridge and not at room temperature
as bacteria grow quickly at room temperature.
• Cook all food thoroughly and make sure it is piping hot all the
way through.
• Cook meat until the juices are clear.
• Pre-heat the oven to make sure food is cooked at the recommended
temperature.
• Always follow the manufacturer's guidelines and do not shorten
cooking times.
Reheating food
• Do not reheat cooked rice. Eat rice as soon as it is cooked.
• Microwave cookers can be used for defrosting and for heating
prepared foods. Follow the manufacturer’s instructions for
prepared foods.
• For home-cooked foods, cool food at room temperature within an
hour after cooking and then refrigerate or freeze.
• Eat reheated food within 24 hours of preparing or defrosting it.
Do not reheat food more than once.
• Do not put hot food in your fridge, as this will increase the
temperature of all the food in the fridge making it unsafe to eat.
• Cover food and allow it to cool to room temperature before putting
it in the fridge.
Kitchen hygiene
• Disinfect work surfaces regularly
• Wash can tops before opening them
• Wash fruit and vegetables before eating
• Clean tap spouts regularly
• Wash the roof and inside of your microwave regularly
Eating out
• Make sure food is piping hot when served and cooked all the
way through.
• Choose freshly prepared foods from reputable outlets. Avoid salad
bars, street vendors, market stalls and ice cream vans.
10 11

FOOD SAFETY ADVICE IF YOUR NEUTROPHIL
COUNT IS BELOW 2.0 X 10 9 /LITRE
This list provides examples of high risk foods that should be avoided
and suitable alternatives.
Avoid
All unpasteurised dairy products
eg milk sold on local farms
Alternatives
Any pasteurised milk, soya milk,
Jersey milk or UHT milk
Avoid
Raw eggs or undercooked eggs
eg homemade mayonnaise,
homemade ice cream, mousse,
egg-nog, meringue, hollandaise sauce,
and béarnaise
Any dressing containing raw eggs eg
home/restaurant-made caesar salad
dressing
Alternatives
Hard boiled eggs; shop-bought
mayonnaise and other products made
with pasteurised egg
Soft cheeses made with unpasteurised
milk eg feta, parmesan
Homemade/deli paneer and labnah.
Mould-ripened cheeses
eg camembert, brie, goat’s cheese
Blue veined cheeses eg Danish blue
and stilton
Cheeses made with pasteurised milk,
processed cheese eg Dairylea, Kraft,
Philadelphia, mesh and halloumi
Pasteurised parmesan, pasteurised
mozzarella. Paneer made with
pasteurised milk
Vacuum-packed pasteurised and hard
cheeses eg cheddar and edam
Probiotic or “bio” foods, drinks or
supplements eg Yakult, Actimel,
ProViva
Yogurt which is described on the label
as bio or probiotic*
Meat paté, vegetable paté
Any yogurt that does not describe
itself as bio or probiotic including live,
plain, Greek and fruit yogurts
Pasteurised paté and paste in tins
or jars that do not need to
be refrigerated
Raw or lightly cooked shellfish
Raw/undercooked meat, poultry
or fish eg meat which is still pink,
sushi, caviar and oysters
Smoked meats eg salami
Avoid smoked salmon unless eaten
directly from a freshly opened packet
Well-cooked shellfish
eg prawn curry
Well cooked meat, poultry and fish;
tinned meat and fish
Vacuum-packed cold meats such as
turkey and ham stored below 3°C and
eaten following the manufacturer’s
instructions
Vacuum packed fish eaten straight
from a new packet. This includes
smoked salmon
* The live bacteria used in making yoghurts are not harmful. So yogurt described as
‘live’ is safe during neutropenia. However the bacteria used in bio or probiotic foods
cannot be guaranteed as safe during neutropenia.
12 13

FURTHER FOOD SAFETY ADVICE FOR A NEUTROPHIL
COUNT BELOW 0.5 X 10 9 /LITRE
During a stem or bone marrow transplant, or high-dose chemotherapy
you are more susceptible to infections, so you need to be stricter
about your diet.
In addition to the advice on page 12 for food safety, it is
recommended that you follow further dietary advice for when your
neutrophil count falls below 0.5 x 10 9 /litre.
This means that you will have a few further restrictions to consider.
Foods to avoid as well as the recommended alternatives are
listed below.
Avoid
Alternatives
Avoid
Non-drinking water, bottled mineral
or spring water, water from wells,
water from coolers, domestic water
filters and water fountains
Ice when away from home eg in a
restaurant and slush puppies
Ice cream from ice cream vans
Unpasteurised or ‘farm fresh’ honey
and honeycomb
Alternatives
Freshly run tap, carbonated water
Please check with your hospital for
guidance
Ice made from appropriate water
sources (see above)
Ice cream from reputable sources,
individual portions, wrapped, small
pots
Pasteurised or heat-treated honey.
Ideally try to use individual sachets or
portions
Raw unpeeled fruit or vegetables
including salad items, stuffed vine
leaves, fatoosh and taboulleh
Raw dried fruit, products containing
these eg muesli, Bombay mix,
confectionary
Damaged or over-ripe fruit or
vegetables
Unpasteurised or freshly squeezed
fruit or vegetable juice or smoothies
Fresh nuts, nuts in shells
Uncooked herbs, spices and pepper
Cold smoked salmon
Good quality fruit and vegetables that
are well cooked or peeled
Cooked dried fruit eg in fruitcake,
flapjacks or cereal bars
Tinned fruit
Pasteurised smoothies
UHT or long-life fruit juices – in
cartons or jars
Cooked nuts, nuts in cans
Peanut butter, roasted nuts
Cooked herbs, spices and pepper
Cooked dishes containing smoked
salmon
Unnecessarily large packets of food
items from pick and mix, universal jars
Deli counter foods eg olives, houmous,
shawirma and baklava
Ideally, packets should be individual
portions eg butter, sweets, pickles
Please check with your hospital for their policy regarding foods
brought in by visitors.
14 15

DIETARY ADVICE AFTER YOUR STEM CELL
TRANSPLANT
After a stem cell transplant your immune system will be rebuilding
itself and you may be more vulnerable to infections. You may also
be taking immune suppression medications for some time after
treatment.
It is advisable to continue good food hygiene at home after your
transplant. It may also be necessary to continue some of the dietary
restrictions on page eight of this booklet. Your doctor, specialist
nurse or dietitian can advise on this.
Nutritional supplement drinks
If you are advised by your dietitian or other healthcare professional to
take nutritional supplements, these can be stored unopened at room
temperature. Once opened these drinks should be stored as follows;
• unrefrigerated for up to four hours;
• refrigerated for up to 24 hours.
Important points
• Wash your hands
• Buy it and store it safely
• Small individual packets
• If in doubt, ask
POOR APPETITE
Many people with illnesses find there are times when they cannot eat
as much as usual and they may lose weight. There are lots of reasons
why this happens, for example; loss of appetite, feeling full quickly,
effects of treatment, worry or any combination of these.
Eating well helps you avoid losing weight, and helps your body
re-build damaged tissues, fight infection, and cope with the side
effects of treatment.
If you are not eating as well as you would normally, the following tips
may help you to eat more.
Try to eat small and frequent meals and snacks for example: every two
hours. Here are some snack ideas:
Biscuits and cakes Sandwiches Small pieces of pizza,
flan, sausage rolls
Fruit (fresh and tinned)
Ready-made desserts
such as yoghurt, crème
caramel, trifle, mousse
Cheese and crackers,
cheese straws & cubes
Crisps, roasted nuts and
savoury biscuits
Fun sized chocolate bars
Crumpets, scones,
muffins, croissants,
toast, breakfast cereal
• Be positive about what you do eat – every extra mouthful helps.
• Try not to get out of the habit of eating. You actually need to eat to
stimulate your appetite.
• Your appetite may come and go, so it is important to make the most
of the times you feel like eating.
• Do not worry if it is not ‘normal’ foods at ‘normal’ times – if you
fancy cereal at midnight, enjoy it!
16 17

• Try to relax and enjoy what you eat. Eat slowly and chew your food
well, trying to rest before and afterwards.
• A short walk before a meal or some fresh air may help give you
an appetite.
• A small glass of wine, beer, sherry or your favourite drink taken
half an hour before a meal may boost your appetite. Check with
your doctor first.
• Experiment with different foods. You may find that you like things
you do not usually eat.
• Accept offers from friends and relatives to help with cooking and
shopping.
• Convenience foods are a useful standby and can be just as
nourishing.
• If you have a freezer, try to prepare food in advance when you feel
like cooking and store it for when you are not feeling so well.
• Avoid filling yourself up with large servings of vegetables, salads,
water and fizzy drinks. They provide bulk but little nourishment.
• Tempt your appetite by making food look attractive – use small
portions on a small plate, and try adding garnishes such as lemon
or parsley.
• Sometimes the smell of food will be appetising while at other times
it may put you off. If this happens, try to keep away from the
kitchen while food is being prepared, or eat cold foods, which often
have less smell.
• Avoid drinking with meals as this may fill you up and spoil your
appetite.
If you continue to be concerned about your diet and weight loss,
there is a wide range of nutritional supplements available on
prescription. They can be used to supplement your intake and help
to maintain your weight. If you feel that you would benefit from using
these products, ask your dietitian who will be able to advise you.
18 19

HELP AND SUPPORT
We have listed a number of organisations with a brief description
of just some of the services they offer. Please contact them for further
information.
OUR BOOKLETS
You can download or order these booklets from our website
beatingbloodcancers.org.uk or call us on 020 7504 2200 for more information.
There is also a page on the Leukaemia & Lymphoma Research website
which contains up-to-date details of organisations which can
offer help and support: beatingbloodcancers.org.uk/helpandsupport
• CancerHelp UK (a Cancer Research UK website)
Provides patient information and a telephone helpline/email advice service
run by specialist cancer information nurses. Also offers an online discussion
forum for people affected by cancer.
0808 800 4040 (Nurse Helpline) | cancerhelp.org.uk
• Leukaemia Care
Offers patient information, a 24 hour care line and support groups for
people affected by leukaemia, lymphoma, myeloma, myelodysplastic
syndromes, myeloproliferative neoplasms and aplastic anaemia.
01905 755 977 (General enquiries) 08088 010 444 (Care Line)
| care@leukaemiacare.org.uk | leukaemiacare.org.uk
• Leukaemia & Lymphoma Research
Offers patient information and telephone/email advice on blood cancers
and related diseases.
020 7504 2200 (Patient Information team)
| patientinfo@beatingbloodcancers.org.uk | beatingbloodcancers.org.uk
• Macmillan Cancer Support
Offers practical, medical, financial and emotional support.
0808 808 0000 | cancerline@macmillan.org.uk | macmillan.org.uk
Leukaemia
• Acute Lymphoblastic Leukaemia
(ALL): Children, Teenagers and Young
Adults (to 25 Years): UKALL 2011 trial
• Acute Promyelocytic Leukaemia (APL)
• Adult Acute Lymphoblastic
Leukaemia (ALL)
• Adult Acute Myeloid Leukaemia (AML)
• Childhood Acute Myeloid Leukaemia
(AML)
• Chronic Lymphocytic Leukaemia
(CLL)
• Chronic Myeloid Leukaemia (CML)
Lymphoma
• Hodgkin Lymphoma (HL)
• Low-grade Non-Hodgkin Lymphoma
(NHL)
• High-grade (NHL)
• Extranodal (NHL)
Multiple myeloma
• Multiple Myeloma (MM)
Related conditions
• Myelodysplastic Syndromes (MDS)
• Myeloproliferative Neoplasms ( )
Treatment
• Bone Marrow and Stem Cell
Transplantation – for Children
and Adults
• Chemotherapy – What Do I Need
to Know?
• Clinical Trials
• Donating Stem Cells – What’s
Involved?
• Donor Lymphocyte Infusion
– What’s Involved?
• The Seven Steps – Blood & Bone
Marrow Transplantation
• Treatment Decisions
• Undergoing High Dose Therapy and
Autologous Stem Cell Transplant
20 21
General
• Complementary and Alternative
Medicine
• Dietary Advice for Patients with
Neutropenia
• Newly Diagnosed with a Blood
Cancer
• Supportive Care
• Watch and Wait
Booklets for children and young
adults
• Jack’s Diary
• Wiggly’s World
• Young Adults with a Blood Cancer
– What Do I Need to Know?

For anyone affected by blood cancer
39–40 Eagle Street, London WC1R 4TH
bloodwise.org.uk
020 7504 2200 (Reception); 0808 2080 888 (Support Line)