Living Well with Acute Myeloid Leukaemia (AML)

104 Pages·2017·0.61 MB·English

Living Well with
Acute Myeloid
Leukaemia (AML)
A Guide for
Patients
Introduction
Being diagnosed with acute myeloid leukaemia (AML) can
be a shock, particularly when you may never have heard
of it. This booklet covers a range of topics to help you cope
a little better.
Booklet compiled by Flora You may experience all of the
Dangwa, Monica Figueiredo, Anne emotions featured in this booklet,
Crook, Alison Kyle, Sandra Gates, some of them, or maybe none at
Moez Dungarwalla, Anne Johnson, all. Experiences vary from person
Genevie Isaacson, Andrew Nye, to person. This booklet, and the
Molly Clavering, Steve Knapper, organisations listed in it, are
Julia Williams and Caroline available to help you whatever you
Hoffman who also peer reviewed may be facing.
along with Natasha Jones, Hannah
Remember, you can also find
Tramaseur, Lizzy Davies, Una
tailored advice for your particular
Farrell and Catia Oliveira. We
situation by talking to your GP or
are also grateful to Julie Quigley
your medical team.
for her valuable contribution as
patient reviewer.
If you would like any information on the sources
used for this booklet, please email
[email protected]
for a list of references.
Version 1
Printed: 05/2018
2 www.leukaemiacare.org.uk Review date: 05/2020
In this booklet
2
Introduction
3
In this booklet
4
About Leukaemia Care
6
Changes to appearance and body image
16
Relationships, fertility and sex
26
Emotional impact of AML
36
Diet
46
Infection control
54
Exercise
62
Fatigue
67
Work and finances
79
Telling others about AML
87
Complementary therapies
98
Mindfulness
101
Glossary
103
Useful contacts and further support
Helpline freephone 08088 010 444 3
About Leukaemia Care
Leukaemia Care is a national charity dedicated to ensuring
that people affected by blood cancer have access to the
right information, advice and support.
Our services found on our website at www.
leukaemiacare.org.uk/support-
Helpline
and-information/help-and-
Our helpline is available 9.00am - resources/information-booklets/
10.00pm on weekdays and
Support Groups
9.30am - 12.30pm on Saturdays.
If you need someone to talk to, Our nationwide support groups
call 08088 010 444 are a chance to meet and talk
to other people who are going
Nurse service
through a similar experience.
We have two trained nurses on For more information about a
hand to answer your questions support group local to your area,
and offer advice and support, go to www.leukaemiacare.org.
whether it be through emailing uk/support-and-information/
[email protected], support-for-you/find-a-support-
over the phone on 08088 010 444 group/
or via LiveChat.
Buddy Support
Patient Information Booklets
We offer one-to-one phone
We have a number of patient support with volunteers who have
information booklets like had blood cancer themselves
this available to anyone who or been affected by it in some
has been affected by a blood way. You can speak to someone
cancer. A full list of titles – both who knows what you are going
disease specific and general through. For more information
information titles – can be on how to get a buddy call
4 www.leukaemiacare.org.uk
08088 010 444 or email service, LiveChat (9am-5pm
[email protected] weekdays).
Online Forum Campaigning and Advocacy
Our online forum, Leukaemia Care is involved in
www.healthunlocked.com/ campaigning for patient well-
leukaemia-care, is a place being, NHS funding and drug
for people to ask questions and treatment availability. If you
anonymously or to join in the would like an update on any of
discussion with other people in a the work we are currently doing or
similar situation. want to know how to get involved,
email advocacy@leukaemiacare.
Patient and carer conferences
org.uk
Our nationwide conferences
Patient magazine
provide an opportunity to
ask questions and listen to Our quarterly magazine includes
patient speakers and medical inspirational patient and carer
professionals who can provide stories as well as informative
valuable information and support. articles by medical professionals:
www.leukaemiacare.org.uk/
Website
communication-preferences/
You can access up-to-date
information on our website,
www.leukaemiacare.org.uk,
as well as speak to one of our
advisers on our online support
Helpline freephone 08088 010 444 5
Changes to appearance and
body image
There can be many changes to your body and appearance when
you are going through your blood cancer journey, from diagnosis
to treatment and beyond. In this chapter, we talk about some of
the common changes that you may experience as well as offering
suggestions on how to cope with them.
Hair loss people describe hair loss as one
of the most distressing physical
Hair loss or alopecia is a common
and psychological side effects of
and well-known side effect
cancer treatment, reporting loss
experienced by people receiving
of self-confidence, feelings of
high-dose chemotherapy.
sadness or even depression.
Body hairs including the scalp,
eyelashes, armpit as well as pubic There are many ways that can
hair can fall out. Hair loss occurs help you to cope with the loss of
because some chemotherapy hair. A holistic needs assessment
drugs may affect actively dividing (HNA) can help identify some of
cells including cancer and hair your physical and psychological
follicles. Hair loss may begin a needs and ensure your needs and
few days to weeks after starting management plans are met in a
treatment. Hair loss is usually timely and appropriate way.
temporary, and normally reverses
The NHS has a provision for wig
on completion of treatment. Hair
supply for those who may need
may even start to grow back
them. There are several options
before treatment is completed.
available for wigs, which include
People receiving low dose human hair wigs or synthetic
chemotherapy or other anti- wigs.
leukaemia drugs like azacitidine
You are entitled to a free wig
may experience thinning of hair
if you a hospital inpatient. For
but not total hair loss.
more information, go to the
Hair loss can have a physical as NHS website: www.nhs.uk/
well as psychological impact on NHSEngland/Healthcosts/
you and the value of hair loss Pages/Wigsandfabricsupports.
cannot be underestimated. Some aspx
6 www.leukaemiacare.org.uk
Helpline freephone 08088 010 444 7
Changes to appearance and
body image (cont.)
Alternatively, you may choose to Weight
shave off your hair before it starts
It is usual for you to experience
to fall out rather than waiting for
weight loss. There are several
it to fall out on its own, or you may
factors that can contribute to
choose to wear head scarves or
weight loss during treatment.
nothing at all.
These include gastrointestinal
symptoms of nausea, vomiting
Holistic Needs Assessments
or diarrhoea or treatment-related
(HNA):
mucositis (sore mouth) and loss
The Holistic Needs Assessment
of appetite. It is estimated that
is seen as a key tool between
up to 70% of people receiving
healthcare professionals. Your
high-dose chemotherapy can
clinical nurse specialist will aim
experience chemotherapy induced
to offer you a HNA at different
nausea and vomiting. Changes in
times within the treatment.
taste sensations can also affect
Each centre has agreed
the ability to maintain weight
internally when they think it is
during treatment. These are all
most appropriate to be carried
out. Some departments will factors that can result in eating
offer you a HNA a few weeks less and affect your weight. You
after being diagnosed, after can expect a fluctuation in weight
your first cycle of chemotherapy and can lose an average of 6%
and at the end of treatment, of your original weight before
but there is no right or wrong starting treatment but will usually
time to complete them. It is find that you recover around the
important for you to know that six-month post-treatment mark.
you are able to talk to your
clinical nurse specialist about Treatment will always be tailored
any topic covered on the HNA to your weight. The dose of
at anytime, not only when it is chemotherapy given to you will
offered to you. be calculated based on your
weight. Before starting treatment,
8 www.leukaemiacare.org.uk
during and after you will always presentation of AML. Daily and/
have access to a specialised or weekly screenings of you
dietitian that will work with you depending on severity of any
to improve your eating/drinking gastrointestinal symptoms is
and your overall weight. Anybody recommended. If you experience
starting treatment for leukaemia extreme weight loss, you should
is weighed prior to starting be referred to a specialist
treatment as a matter of protocol. dietician, where appropriate.
Baseline weight is important
Dietary advice also plays an
because it helps to calculate
important part in maintaining
baseline body mass index (BMI)
a good weight. You should be
and because, traditionally,
advised on a neutropenic diet
chemotherapy dosages are based
(more of which can be read
according to your body surface
about on page 36), including
area (BSA) or body mass index
high calorie and high protein
(BMI). There are some guidelines
drinks and food. You can also be
for approximate dosing for obese
encouraged to eat whatever you
adult patients with cancer,
want as and when you can.
however, some studies in AML
have found no differences in Memory and
treatment-related toxicities or
concentration changes
outcomes in people with varying
body weight. If you are concerned Difficulty in concentration and
that your weight might impact changes in memory have been
on your treatment, speak to your reported in people with leukaemia.
medical team. These cognitive changes have
been acknowledged as having
There are ways to help you
a limiting effect on quality of
maintain a baseline or good
life. There are several factors
weight throughout. These include
that can contribute to memory
screening and assessing your
and concentration changes.
weight and nutrition status at
Helpline freephone 08088 010 444 9
Changes to appearance and
body image (cont.)
Pain, lack of sleep or difficulty in you. Healthcare professionals like
sleeping, worrying and sadness, social workers and counsellors
have been mentioned as some of within local teams can then plan
the physical and psychological for psycho-social support and
factors that affect concentration assistance for you according to
and memory changes. Your your needs.
environment like prolonged
Alternative therapies and
periods as an in-patient and
psychological interventions like
psychological distress associated
mind-body practice including
with the diagnosis of leukaemia
meditation and mindfulness,
have also been identified as
have been found to be beneficial
contributing factors to changes
for some people. Meditation is
in concentration. Other factors
said to help with focus, controlled
associated with concentration
regulation of breathing and
changes include financial and
control of thoughts over feelings
social difficulties.
and has been proposed to
Treatment for AML usually takes increase your ability to focus (also
months and there are ways to known as attentional exercise).
help with changes in memory
For more information on the
and concentration during this
benefits of complimentary
time. Information on disease,
therapies and mindfulness
treatment and management
when living with AML, there are
as well as a holistic needs
designated chapters later on in
assessment (HNA) from the
the booklet, starting on page 87.
beginning is important. Having
this type of routine distress Skin changes and nail
screening at diagnosis can help
care
identify you with any complex
psycho-social care factors that Chemotherapy may induce skin
are likely to contribute to memory and nail changes during or after
and concentration changes for treatment. Although not life
10 www.leukaemiacare.org.uk