Download Myeloma Matters vol 8 issue 3

MyelomaMatters
• Newsround
Green tea update
• Special feature
Findings from fatigue survey
• Medical Matters
The spine: a core issue
• Living with myeloma
Diet and myeloma
Volume 8 Issue 3
www.myeloma.org.uk
LETTERS
Editor’s letter
Dear Readers
Welcome to the
latest issue of Myeloma
Matters which I hope
you will find informative.
In this issue, Myeloma
Nurse Specialist Linda Little provides an
overview of the treatment and management
of myeloma bone disease of the spine, and
an article by our in-house nutrition expert
Jennifer Foley provides an update on the
current advice regarding diet and myeloma.
We are grateful to Malcolm Cole, a
patient from Oxfordshire, for sharing his
experience of myeloma and his new found
role as an NHS patient representative.
In this issue we also report the findings
from a Myeloma UK survey sent to over
100 patients asking about their experience
of fatigue, which remains one of the least
understood and poorly treated aspects
of myeloma.
As we gear up for National Myeloma Week
2009, we ask for your support. The focus
of this year's week is to raise awareness of
myeloma within the GP population so that
fewer patients experience a delay in
diagnosis and to raise funds to support our
myeloma research programme. Please get
in touch for a pack which gives information
about how to get involved.
In the meantime, I hope you enjoy this issue
and thank you for your continued support.
If you have any feedback or suggestions for
Myeloma Matters, I'd love to hear them.
With best wishes
Jude Watson
Editor
/
CONTENTS
Contents
3–4
Newsround
5
Special feature
6
Myelomascope
7
Research
8 – 10
The spine: a core issue
11 – 13
Living with myeloma
14
Ask the nurse
15
Policy and politics
16 – 17
Patient experience
18
AL amyloidosis
19 – 20
Fundraising in action
22 – 23
Myeloma UK news
Letters
I just wanted to send my personal thanks and also that of my
local support group for the work that your organisation has
carried out on patient's behalf in reversing NICE's original
decision on the provision of Revlimid. The arrangement that
has been agreed with the various parties is truly remarkable
and has provided an enormous lift to people like myself who,
after ten years, have recently completed Velcade treatment and
were faced with an uncertain future. Following on from your
advocacy with Velcade, we have much to be thankful for with
such an active charity looking after our interests. Keep up the
good work and once again, many thanks.
Malcolm Bidwell, Patient, Colchester Myeloma Support Group
I read with great interest your article on exercise in the last
issue of Myeloma Matters. Prior to my myeloma diagnosis,
I enjoyed various forms of exercise including cycling but I've
been wary of doing any physical activity in case I did more harm
than good or fractured a bone. However, since reading this
article I'm going to discuss it with my consultant at my next
appointment and hopefully I'll be back on my bike in time
for Spring!
Patient, Torquay
Thank you for reminding me of the dates of National Myeloma
Week 21 – 28 June. I received the postcard insert in the last
issue. I haven't decided how I'm going to get involved yet – but
I'll be roping in all my family and friends to help raise much
needed money and awareness.
Mrs Black, Patient, London
Send us your feedback
Send your letters to: Jude Watson, Myeloma UK,
Broughton House, 31 Dunedin Street, Edinburgh EH7 4JG
 [email protected]
2
NEWSROUND
Scotland Against Cancer Conference 2009
The 7th Scotland Against Cancer
Conference, supported by the
Cross Party Group on Cancer of
the Scottish Parliament, was held in
Glasgow on Friday 20 March.
This annual conference provides an
important opportunity for both
politicians and stakeholders in the
field of cancer to discuss the
direction of cancer services and
policy in Scotland. The focus this
year was the publication of the
Scottish NHS Cancer Plan,
which sets out national plans for
development and addressing
challenges.
Keynote speakers at this year's
conference included Nicola Sturgeon
MSP, Cabinet Secretary for Health
and Well-being and Prof John Frank,
Director of Scottish Collaboration for
Public Health Research and Policy.
The audience was given the
opportunity to address the panel in a
Q&A session and also to participate
in one of eight discussion groups.
Topics included 'appraising
treatments', 'diagnosing cancer
earlier' and 'reducing cancer
inequalities'. A full report from the
conference will be available soon
at: www.cancerresearchuk.org
Nicola Sturgeon MSP
Green tea may 'cancel out'
effectiveness of Velcade
Revlimid receives
According to a study undertaken at
the University of Southern California,
some components of green tea
may counteract the anti-cancer
effects of Velcade (bortezomib).
This was discovered when the
study team evaluated whether the
combination of green tea and
Velcade would improve the
effectiveness of Velcade in
myeloma patients.
A final positive recommendation
for Revlimid (lenalidomide) was
published this week by the
National Institute for Health and
Clinical Excellence (NICE). The
recommendation officially
endorses the use of Revlimid in
England and Wales for myeloma
patients who have received two or
more prior therapies.
TM
Green tea has been shown to have
anti-cancer properties that have
been found to be effective against
lung, breast and prostate cancer.
An anti-oxidant compound found
in green tea extract called EGCG
polyphenol binds to a common
protein in cancers and stops it
working. This causes the death
of cancer cells.
As Velcade works in a similar way,
researchers predicted that giving
green tea extract to myeloma
patients alongside Velcade would
enhance the anti-myeloma effect
of Velcade. This would provide a
double 'blow' to the myeloma cells.
However, the findings from the
study showed that the opposite
was true. The EGCG compound
appeared to inhibit the action of
Velcade by blocking the main
function of the drug. The two
effectively cancelled one another
out in the cell. This 'cancelling out'
effect was found only in
concentrations of EGCG that would
be found in concentrated green tea
supplements, i.e. two-three
capsules of green tea extract.
Dr Schöenthal, senior study author
stated that: “the current evidence is
sufficient enough to strongly urge
patients who are taking Velcade
to abstain from using green tea
products, in particular…highly
concentrated green tea products.
It is important to note that other
myeloma treatments do not react
with green tea in this way.”
final ‘yes’ from NICE
TM
Final guidance will be distributed
to the NHS within six weeks and
by August 2009 Primary Care
Trusts will be required by law to
make funding for Revlimid
available. However, Myeloma UK
fully expects most Primary Care
Trusts to have already made
arrangements so that they can
implement the positive decision
immediately.
Please contact Sarah on
0131 557 3332 if you experience
any difficulties in obtaining
Revlimid, or any treatment,
on the NHS.
3
NEWSROUND
New measures announced to increase
patient access to drugs
guidance, usually carried out
through Primary Care Trust (PCTs).
A handbook for the NHS has been
published, detailing good practice on
how decisions on new drugs should
be made by PCTs when there is no
NICE guidance.
Four measures designed to speed
up patient access to new drugs
have been announced by the
National Institute for Health and
Clinical Excellence (NICE) and
Health Minister Lord Darzi. These
announcements form part of the
recent NHS Next Stage Review
in which Lord Darzi stated his
commitment to speed up the NICE
process and improve local decisionmaking on access to new drugs not
yet approved by NICE.
Lord Darzi
The first three measures announced
relate to proposed changes to NICE
appraisals. A consultation document
has been issued to key stakeholders
on proposals that will enable NICE to
appraise a drug more quickly and
allow the faster referral of drugs. The
proposals for consultation also allow
for an increased level of investment
in 'horizon-scanning' to ensure that
new drugs are identified early on for
appraisal. The creation of a new
appraisal committee within NICE has
been proposed to help ensure that
NICE has the capacity to implement
these changes fully. The fourth
measure addresses the policy of
'exceptional funding' which is the
process of local NHS decisionmaking in the absence of NICE
Lord Darzi has stated that these
changes “will help provide faster
and fairer access to new drugs.”
The consultation on the proposed
changes to NICE will run for three
months whereas the handbook
has been issued to PCTs with
immediate effect.
Myeloma UK will be responding to
the consultation on the changes to
the NICE appraisal system.
We will also use our experience of
the current PCT decision-making
process to determine the value of
the new PCT handbook.
Myeloma UK praised in Parliament
A House of Commons Early Day
Motion (EDM), tabled by
Dr Ian Gibson MP on 9 February,
has recognised the efforts of
Myeloma UK in influencing recent
reforms to NICE, which allow it
more flexibility in the appraisal of
drugs for rarer diseases and
cancers such as myeloma. These
reforms, together with a pricing
scheme Myeloma UK helped to
bring about, made it possible for
NICE to overturn the initial negative
decision on Revlimid.
The EDM 'warmly welcomes
the positive outcomes for patients'
arising from the recent reforms
to the NICE appraisal process.
Dr Ian Gibson MP
4
It congratulates the patient groups
that championed these reforms and
who were involved in the preliminary
recommendation to make Revlimid
available for use in the NHS to treat
myeloma, particularly Myeloma UK
and the Rarer Cancers Forum.
The EDM also congratulates NICE
for introducing additional
considerations for the appraisal of
life-extending drugs and Celgene
for negotiating this new price sharing
scheme. In total there were
39 MP signatures supporting this
motion in parliament.
Myeloma UK thanks Members of
Parliament both for this recognition
and also for the support they have
given to the myeloma community
throughout the Revlimid appraisal.
SPECIAL
FEATURE
Myeloma UK survey highlights
fatigue a major problem
Unlike tiredness, fatigue is often not
relieved by rest or sleep. Patients
state they feel 'weary in spite of
sleeping well at night'. It can be
difficult to define the exact cause of
fatigue and in reality there can be
many underlying sources. Fatigue
can be due to myeloma and its
complications; it can be a side-effect
of myeloma treatments; and it can
be attributable to the emotional
impact of living with myeloma.
Fatigue is one of the most common
symptoms of myeloma and one of
the most common side-effects of
treatment. Despite this fatigue remains
one of the least understood and
poorly treated aspects of myeloma.
To help improve our understanding
of fatigue Myeloma UK carried out a
survey in over 100 myeloma patients.
In comparison to other symptoms of
myeloma and side-effects of its
treatment, patients surveyed ranked
fatigue as the most challenging to
live with. In total, 88% of respondents
found that fatigue made their lives
more difficult. One patient stated
that 'the fatigue I feel is like having
a harness you put on when you get
out of bed in the morning'.
Results snap shot
Patients with fatigue reported that it
impacted on their ability to exercise
and do day-to-day activities such
as cleaning, socialising and attending
hospital appointments. 83% of
respondents had experienced fatigue
and 70% stated that it impacted on
the quality of their personal and
family life.
• 83% of respondents had
experienced fatigue
Although it can be debilitating, the
majority of respondents did not
report symptoms of fatigue as they
considered feeling tired and washed
out as something not important
enough to bother their doctor or
nurse with.
• Only 28% of respondents
had asked a healthcare
professional (HCP) for
advice on ways to cope
with fatigue
Around half of all respondents stated
they wanted to receive more
information on fatigue and yet only a
small proportion of respondents had
sought advice from their healthcare
professional on ways to cope with
fatigue.
Fatigue can be described as
'extreme tiredness or loss of energy'.
• Fatigue ranked as the
most challenging symptom
of myeloma to live with
• 88% of respondents said
that fatigue made their life
more difficult
40% of respondents to the survey
had been told at some point that
fatigue was something they had to
'put up with'. However, a common
cause of fatigue is anaemia, a
treatable complication of myeloma.
Fatigue can also be managed
through general lifestyle changes,
including to exercise and diet
habits, and may also improve once
treatment is finished.
Take home message
Our survey highlighted that fatigue
may be the symptom that has most
impact on patients but its
assessment and management remain
limited. Healthcare professionals may
perceive fatigue differently to patients,
and may underestimate its impact on
a patient's quality of life.
• 40% of respondents had
been told that fatigue was
just something that they
had to put up with
The results also demonstrate the
need for better reporting of fatigue
by patients to their healthcare
professionals who may be able to
help them overcome fatigue through
various approaches. Myeloma UK
has information on ways to modify
lifestyle to help patients' self-manage
fatigue.
• 33% of patients wanted an
explanation of what fatigue
is and why they get it
If you have any questions about
the survey or about fatigue call the
Myeloma Infoline on 0800 980 3332.
• 50% of patients wanted to
receive more information on
fatigue from their HCP
5
RESEARCH
Myelomascope
The Multiple Myeloma
Research Consortium launch
US study of Zolinza in
combination with Velcade
for myeloma patients
The Multiple Myeloma Research
Consortium (MMRC), in partnership
with the pharmaceutical company
Merck & Co, has begun a study in
the US of Zolinza™ (vorinostat) taken
in combination with Velcade for
patients with relapsed or refractory
myeloma. The study is now open for
patient enrolment at over 60 centres
in the USA.
Zolinza belongs to a class of drugs
called oral 'histone deacetylase
(HDAC) inhibitors', which affect DNA
gene expression. It is anticipated
that patients who have previously not
responded well to Velcade will
benefit from a Velcade – Zolinza
combination due to a synergistic
effect between the two drugs.
The study is open to patients who
have not had success with previous
treatment with Velcade, either alone
or in combination with other antimyeloma drugs.
The study will measure numerous
things, including how long patients'
myeloma remains stable while taking
the combination of drugs, and any
side-effects experienced.
Expected long-term statistics
are optimistic for myeloma
Recent advances in novel drug
treatments and supportive care have
led to significant improvements in the
survival and quality of life of myeloma
patients. In light of this, and with the
aid of novel statistical assessment
methodology, researchers have
6
This micro-environment contains
many living cells that are responsible
for the process of bone re-modelling.
There is a very close relationship
between myeloma cells and the
surrounding cells in the bone
marrow micro-environment that
contribute to the growth and survival
of myeloma cells. The bone marrow
micro-environment also acts to
protect myeloma cells from the
action of some drugs used to
destroy myeloma cells.
projected new estimates of the
impact they expect that advances in
the treatment and care of myeloma
patients will have in the near future.
The results were published in the US
journal Haematologica in an article by
Hermann Brenner called,
'Expected long-term survival of
patients with multiple myeloma in
2006-2010'. Encouragingly, the
findings show that patients,
particularly those under 45, who are
diagnosed during this period can
expect to live significantly longer than
was previously suggested.
Valproic acid interferes with
myeloma cell growth and
survival
A drug called valproic acid widely
used as an anti-epileptic drug
has recently been shown to have
potential as an anti-myeloma drug
as it is targeted to act within the bone
marrow.
Bone is primarily made up of a
matrix known as the 'bone marrow
micro-environment'.
Valproic acid belongs to a group
of drugs known as HDAC inhibitors
that interfere with the genetic
expression of certain cells. Recent
studies have confirmed that valproic
acid induces myeloma cell death
in the bone marrow microenvironment and suppresses the
myeloma-induced overproduction
of bone-destructing cells.
Valproic acid has also been
shown to work well in synergy
with other myeloma drugs, including
thalidomide, melphalan and
dexamethasone. The results
are encouraging and warrant further
research to determine how valproic
acid can be used alongside current
treatments for myeloma.
Any
questions?
 Myeloma Infoline
0800 980 3332
 [email protected]
www.myeloma.org.uk
RESEARCH
Highlights from the
XII International Myeloma Workshop
Over 1,200 myeloma specialists
and scientific researchers from
more than 50 countries gathered in
Washington DC from 26 February
– 1 March for the XII International
Myeloma Workshop (IMW). This
global conference, devoted entirely
to myeloma, is held every two years
for experts in the field of myeloma
to present the latest research
findings and exchange knowledge
and ideas.
The programme consisted of more
than 80 oral presentations, and
many more abstracts were
presented as posters. Outside
the official programme, several
additional formal and informal
meetings took place as those
present discussed challenges and
opportunities in the field of myeloma.
Eric Low, Chief Executive of
Myeloma UK, attended and met
doctors individually and in groups
to discuss the current challenges
and opportunities, share information
and collaborate on future myeloma
projects.
The IMW highlighted:
• Improvements in the
understanding of myeloma
genetics. Understanding the
genetics behind myeloma
can help in making optimal
treatment decisions
• The need to recruit more patients
into clinical studies. Clinical
studies help researchers answer
important question about the
best way to treat and
manage patients.
The most useful studies are those
that follow up patients over a long
period and have large numbers of
patients from many countries
Myeloma genetics
International research is ongoing and
expanding to investigate the genetic
make-up of patients with myeloma.
The research will lead to a better
understanding of the myeloma
pathway in different patients, and will
ultimately help doctors to tailor
treatment to specific subgroups and
individual patients to maximise
response and minimise side-effects.
Some of this work is being led by
Prof Gareth Morgan who is based at
the Institute for Cancer Research in
London. Prof Morgan's research
is funded in part by Myeloma UK
and more details of this research
are available on our website.
Presentations at the IMW
demonstrated the impressive strides
that are being taken in this cuttingedge area of myeloma research.
Clinical studies
The need for more 'co-operative
group' Phase III clinical studies was
discussed. Co-operative group
clinical studies are those that are
run throughout many countries
under the lead of national
governments, usually supported by
pharmaceutical industry funding.
This type of study tends to address
questions that require long-term
follow-up, such as:
• What is the best treatment to
have prior to high-dose therapy
and stem cell transplant?
• What is the value of a stem
cell transplant in the age of
novel therapies?
• What is the role of
maintenance therapy?
Past co-operative group studies
have been run in countries
working collaboratively, such as
the UK, France, Spain, Italy and
the Netherlands. With so many
treatment combinations and
possible sequences in which to
use them, it is important for
patients to participate in clinical
studies so that key questions can
be addressed and progress is
continually made in the treatment
and management of myeloma.
New guidelines have also been
developed by a panel of myeloma
experts in an attempt to create a
standard approach to running
clinical studies in myeloma. The
guidelines outline the types of
clinical information to be collected
and how to present the results of
a study. The guidelines emphasise
the need to use standard
definitions of patient populations,
and they should help to ensure
that findings across important
studies can be interpreted
consistently and thus be of the
most benefit to ongoing research.
Overall, the XII IMW provided an
excellent opportunity for doctors
and scientists to update each
other on the latest developments
in myeloma.
7
MEDICAL
MATTERS
The spine: a core issue
by Linda Little, Haemato-Oncology Coordinator Nurse Specialist Parkside Oncology Clinic
Myeloma bone disease is the most
common and often most debilitating
feature of myeloma.
absolute priority in order to reduce
both long-term problems and impaired
quality of life.
Bone pain is therefore a very
common symptom. Between
70 – 80% of patients have evidence
of myeloma bone disease at the
time of diagnosis and most patients
will experience bone disease at
some point.
Management
Myeloma bone disease in the spine
is managed in two ways:
Myeloma bone disease is due to
myeloma cells in the bone marrow
interacting with the surrounding bone
causing the bone to be broken down
faster than it can be repaired.
1. Treatment of the local problem
within the spine e.g. vertebral
collapse
Normal spine showing
three vertebrae, separated by
vertebral discs.
This spine is aligned correctly.
This usually requires a combination of
interventions, which may include:
The extent of myeloma bone disease
varies considerably in individual
patients. It most often occurs in the
middle or lower spine, the hips and
the rib cage.
• Radiotherapy
• Surgery
• Vertebroplasty or balloon
kyphoplasty
The spine can be involved in at least
two distinct ways:
1. Vertebral collapse due to deposits
of myeloma cells or bone loss
2. Solitary plasmacytoma of bone –
a build-up of myeloma cells in or
around the bones of the spine
Presentation
Depending on the extent of spinal
involvement, patients can experience
height loss and varying degrees of
immobility and neurological (nerve)
problems. Vertebral collapse can
lead to spinal deformity, sometimes
resulting in very debilitating fractures
of the sternum.
Occasionally spinal cord
compression occurs, which can
cause numbness, tingling and
altered sensation in the lower
limbs. This can progress to paralysis
and therefore is treated as a
medical emergency.
8
2. Treatment of the underlying
myeloma, which in turn prevents
further myeloma bone disease
occurring
• Chemotherapy
• Supportive treatments
The central vertebra has a
compression fracture, causing
misalignment of the spine.
This will cause severe back pain.
Investigations
X-rays will demonstrate bone lesions,
bone loss and fractures. Magnetic
resonance imaging (MRI) is highly
accurate in diagnosing and
assessing the size of any
plasmacytoma or area of bone
damage, and in showing any spinal
cord compression. CT and PET-CT
scans can also be useful diagnostic
tools prior to any planned
radiotherapy and CT-guided
interventions.
In all instances of myeloma bone
disease in the spine speed of
diagnosis and treatments is an
• Pain control
Radiotherapy
Radiotherapy is the use of high-energy
radiation (usually X-rays) to kill cancer
cells while doing as little harm to the
healthy cells as possible. It works by
targeting rapidly dividing cancer cells
and damaging them so they cannot
survive or grow.
Radiotherapy is very useful in treating
myeloma in the spine where the
myeloma is causing pain or pressure
on the spinal cord. It can also be used
to treat a plasmacytoma.
Radiotherapy may be used alone or in
conjunction with surgery.
Radiotherapy treatment has to be
carefully planned and requires
specialist staff and equipment.
MEDICAL
This means it is sometimes
necessary to travel to another
hospital for treatment. Treatment is
given using a large machine
positioned exactly over the area of
the body to be treated. Receiving
radiotherapy is very similar to having
an X-ray. The radiation beam is
invisible, and the machine may move
and make a noise. Radiotherapy
treatment itself is painless and lasts
only for a few seconds or minutes.
Side-effects of radiotherapy vary
from person-to-person, but are
almost always temporary and
disappear soon after treatment is
finished. Side-effects may include
tiredness and fatigue, nausea and
sensitivity of the skin at the treatment
site (described as being similar
to sunburn).
Radiotherapy usually offers
immediate pain relief but continues
to work for up to six weeks following
treatment; so the full benefits,
including pain relief, may not be
felt immediately.
Surgery
Surgery may be required to remove
a plasmacytoma or to stabilise the
spine and reduce pressure on the
spinal cord. Intensive physiotherapy
may be used after surgery to enable
patients to regain mobility.
Vertebroplasty or balloon
kyphoplasty
Vertebroplasty and balloon
kyphoplasty are two similar types of
procedure used to help relieve pain
caused by collapsed vertebrae.
Vertebroplasty involves injecting
orthopaedic cement into the
collapsed vertebrae to stabilise and
strengthen it. This can relieve pain
and help prevent further collapse.
Balloon kyphoplasty is a similar
procedure that involves inserting a
MATTERS
Balloon kyphoplasty is a
relatively minor surgical
procedure whereby a small
balloon is inserted into the
vertebra to create a space
before cement is injected to
stabilise the fracture.
balloon into the collapsed vertebra
and inflating it to restore its shape,
stability and strength. In some cases,
it is also able to restore some of the
height loss that was caused when
the vetebra collapsed.
Both of these procedures take place
in either the radiology department or
spinal surgery theatres at the
hospital, and are carried out by an
interventional radiologist or an
orthopaedic surgeon. The
procedures are usually performed
under local anaesthetic or light
sedation, although general
anaesthetic may be used. The
procedures last about an hour for
each vertebra treated (more than one
can be done at a time), and may be
done as a day case or with just one
overnight stay in hospital.
Vertebroplasty and balloon
kyphoplasty are not usually used
interchangeable; one or other will
be used based on the location or
nature of the collapsed vertebra
Further information
Bone Disease and
Bisphosphonates
Myeloma Infoguide Series
Myeloma
Nov
06 Infoline 0800 980 3332
Bone Disease and
Bisphosphonates Infoguide
To order your free copy call
Myeloma UK.
 Myeloma Infoline
0800 980 3332
 [email protected]
9
MEDICAL
in the spine. Both vertebroplasty
and balloon kyphoplasty may bring
immediate and long-term symptom
relief.
Chemotherapy and steroids
Myeloma bone disease in the spine
can also be reduced by treating the
underlying myeloma, for example
by chemotherapy.
MATTERS
and prednisolone may be used in
combination with chemotherapy
both to treat the underlying myeloma
and also to reduce inflammation
and pain.
Supportive treatment
The management of myeloma bone
disease has been revolutionised in
recent years by a group of drugs
called bisphosphonates. These are
Chemotherapy works by targeting
drugs that can help protect bones
rapidly dividing cancer cells and
from the damaging action of myeloma
preventing them from being able
cells and have several benefits in
to multiply and grow. Unfortunately,
treating myeloma bone disease in the
chemotherapy may also affect healthy
spine including:
fast-dividing cells such as those in
the bone marrow, hair follicles and
• Preventing or slowing down further
the lining of the mouth and gut,
damage to the vertebra
causing side-effects.
• Reducing bone pain
Side-effects of chemotherapy include
• Reducing the need for radiotherapy
nausea and vomiting, sore mouth,
tiredness and fatigue, hair loss and
• Reducing the likelihood of further
increased risk of infection.
vertebral collapse
Patients may feel cumulatively more
• Improving the chances of healing
tired during treatment, but this usually
and recovery of strength of bone
gradually resolves once treatment
is completed.
The bisphosphonate may be given as
a daily tablet at home or a monthly
Steroids such as dexamethasone
intravenous infusion in the outpatient
department.
Further information
As with any medication, all painkillers
can have side-effects. These can
include constipation, nausea, loss
of appetite and drowsiness. These
side-effects can usually be managed
effectively. In the case of painkillers
that are known to cause
constipation, it is important to start
drugs to prevent constipation early,
(i.e. laxatives) as constipation is
much easier to prevent than to treat.
Conclusion
The appropriate assessment
and management of myeloma
bone disease in the spine is
extremely important, particularly
in newly diagnosed patients.
This involves two treatment
approaches: managing the local
problem within the spine and
treating the underlying myeloma.
The aim of treatment is to maintain
spinal function and mobility, and
to provide effective symptom and
pain relief, while treating the
myeloma and helping to optimise the
long-term quality of life for patients.
Further information
Side-effects of bisphosphonates are
generally mild and include fever and
flu-like symptoms, generalised bone
aches and pains, nausea and impaired
kidney function.
Pain control
Chemotherapy and
Myeloma Infoguide
To order your free copy
call Myeloma UK.
 Myeloma Infoline
0800 980 3332
 [email protected]
10
Myeloma bone disease in the
spine may cause bone pain due
to the thinning and weakening of
the vertebra and due to vertebral
collapse. All of the treatment
approaches outlined above may
help reduce or control this pain.
Painkillers or 'analgesics' will also
be prescribed to help control pain.
Pain is very individual and different
drugs work best for different people
so it is important that an individual
approach is used.
Pain
Infosheet
To order your free copy
call Myeloma UK.
 Myeloma Infoline
0800 980 3332
 [email protected]
LIVING
WITH
MYELOMA
Diet and myeloma
by Jennifer Foley, Nursing and Primary Care Programmes, Myeloma UK
Anti-cancer foods
Certain vegetables, fruit, whole grains
and legumes are thought to have anticancer activity because they are
especially rich in vitamins, minerals,
fibre and other detoxifying and
antioxidant agents that may help to
suppress cancer growth and improve
the body's ability to remove harmful
substances.
These are often referred to as
superfoods and include the following:
Patients also often question whether
or not a poor diet or nutrition might
have caused or triggered their
myeloma. The best evidence to date
is unable to draw links between a
The queries are generally about which
person's nutritional choices and their
type of food is best to eat or avoid, or
likelihood of getting myeloma.
if there are any specific or wonder
diets that patients should try.
A healthy diet should include:
In all but a very few cases there is no
• Lots of vegetables and fruit
specific diet that is recommended for
myeloma patients. Those who eat a
• Wholemeal and wholegrain
healthy, balanced diet can benefit in
breads, rice, cereal and
many ways.
pasta
Questions and concerns about diet
and nutrition are very common on the
Myeloma Infoline from patients, their
families and carers.
Eating a healthy diet will help to:
• Maximise the body's healing ability
and keep energy levels high
• Best prepare the body for
treatment as well as improve
tolerance and response to
treatment
• Manage the side-effects of
treatment
• Improve quality of life (a person's
comfort, enjoyment and ability to
pursue daily activities)
• Fibre-rich foods, including
beans, legumes and nuts
• Dairy foods, such as yogurt,
cheese and milk
• Fish, particularly cold water
fatty fish like salmon, trout,
mackerel, sardines and tuna
• Fat, of which olive oil, flax
(rapeseed), fish and nuts are
the best sources
• Moderate amounts of lean
meat and poultry
• Vegetables in the cabbage family:
broccoli, brussels sprouts,
cabbage, cauliflower, kale,
swede and turnips
• Vegetables in the onion family:
garlic, onions, leeks and chives
• Berries: blackberries, blueberries
and raspberries
• Whole wheat, corn, oats, rye,
brown rice, millet and quinoa
• Beans (pinto, kidney, white,
lima, black and red), lentils and
split peas
Diet and myeloma – what you
need to know
The vast majority of myeloma patients
are immuno-compromised because of
the nature of the cancer. This means
they are less able to fight infection.
As food contains bacteria and fungi,
patients must always be cautious
about food purchases, preparation,
cooking and storage to avoid picking
up an infection. Extra vigilance may
be even more important during and
after receiving certain treatments.
For example, for a few weeks after
chemotherapy, patients are at
greater risk of infection.
11
LIVING
WITH
MYELOMA
Normally, bacteria and fungi naturally
found in food are removed by
cooking. However, after
chemotherapy, myeloma patients may
be "neutropenic" (i.e. have a
low level of neutrophils, a group of the
body's white blood cells that defend
against food poisoning and infection).
Additionally, the gut lining, which
normally acts as a barrier to prevent
bacteria from entering the
bloodstream, can be damaged during
treatment making it easier for bacteria
to enter the system.
Some general suggestions for
choosing and preparing foods are
set out below:
• When shopping avoid buying
from over-filled refrigerators, as the
food may not be cold enough
• Avoid raw and cooked meats
that are stored with open deli
meats. Buy sealed, pre-packaged
deli items
• Put chilled and frozen foods in
your shopping trolley last. Use a
insulated container or bag to
transport them from the shop to
your home
• Be mindful of the best-before date
on packaging. Buy only what you
know you can eat well before the
date
When storing foods at home
• Keep your fridge temperature
between 0 – 5 C
o
• Keep your freezer below
18 C. Check that food is solid
when you remove it for
defrosting
o
• Store cooked foods at the top
of the fridge
• Defrost meats and fish at the
bottom of the fridge in a
covered container
• Always refrigerate eggs
• Never re-freeze thawed foods
12
When eating out
• Go to reputable places that
prepare fresh foods.
Ensure food is piping hot and
cooked all the way through
• Avoid take-aways
• Avoid salad bars, market stalls
and other exposed foods
When choosing foods
to eat, AVOID 'high-risk'
foods, such as:
Raw, unpeeled fruit or
vegetables, including salads.
Instead eat well-cooked or
peeled fruit and vegetables
Raw, dried fruit in foods like
muesli, Bombay mix and
confectionery
Deli-counter olives, hummus
and meats. Only buy sealed,
pre-packaged or individual
portions
Soft and blue cheese, such as
brie, goat's cheese and cream
cheese
Raw or undercooked eggs,
including mayonnaise and
meringue. Eat hard-boiled eggs
and use shop-bought
mayonnaise
"Live" yogurts, containing
probiotics. Opt for pasteurised
plain and fruit yogurts
Unpasteurised dairy products,
such as local milk or parmesan.
Choose pasteurised milk and
cheese
Raw or undercooked meat,
poultry and fish, including shell
fish, pate, sushi and smoked
salmon and mackerel
Bottled spring, mineral
or carbonated water.
Instead, boil and sterilise water
or drink freshly run tap water
When preparing food and
cooking
• Wash your hands with soap and
warm water
• Use kitchen roll, rather than tea
towels
• Cover cuts and scrapes with
waterproof plasters
• Keep pets out of the kitchen while
cooking
• Wash fruit and vegetables before
eating
• Disinfect work surfaces regularly
• Change or wash your chopping
board when switching between raw
and cooked foods
• Cook all foods until piping hot
• Cook meat until the juices run clear
• Avoid microwaves. Use a preheated oven to ensure appropriate
cooking temperature
Some common diet issues
and tips
Some common eating issues that
myeloma patients face are listed below,
together with suggestions for coping
with and managing these problems.
Loss of appetite
This is one of the most common
side-effects of myeloma and its
treatment that patients experience.
Emotions also play a big part in appetite
– it is important to speak with your
family, carer or nurse to help lessen
your emotional concerns.
LIVING
Suggestions:
• Try liquid or powdered meal
replacements, such as
"Fortisip", "Ensure", "Build-up"
or "Complan" (Ask your nurse
for more options or call the
Myeloma Infoline for a more
detailed list)
• Eat more frequent, small meals
rather than three large ones
• Have regular snacks of mild
cheese and crackers, muffins,
fruit, pudding, cereal bars or
raisins. Try to take them with
you when you go out
• Stick to liquid-based foods
like soups, juice and chocolate
milk that provide energy and
nutrients
• Try porridge or a cup of warm
milk immediately before bed
time
• Try softer, cool or frozen foods
such as yogurt, ice cream, fruit
smoothies and popsicles
• Take advantage of the times
when you do feel like eating
and have a larger meal. Many
people have a better appetite
in the morning, when they are
rested
• While eating, sip small
amounts of water only. Too
much liquid during meals can
make you feel too full for food
• If your doctor permits, enjoy a
glass of wine or beer before or
during your meal. It can help to
stimulate appetite
• Go out for a light walk.
Exercise also stimulates
appetite
WITH
MYELOMA
Changed sense of taste or smell
Myeloma and its treatment,
iespecially chemotherapy and
radiotherapy, can affect taste buds,
therefore altering how food tastes in
the mouth. Foods can also seem to
take on a slightly metallic or bitter
taste, in particular meat and other
high-protein foods. Many patients
find this problem resolves when they
finish treatment. As each person's
sense of smell and taste may be
changed differently, there are no hard
and fast rules.
Suggestions:
Choose and prepare foods that look
good to you
Swap chicken, turkey, eggs or mild,
white fish for red meat
Marinate your foods in sweet wine,
sauces and dressing to draw out their
flavour
spicy or have a strong smell. It may
help to eat a small snack before you
get hungry, because feelings of
hunger can increase your feeling of
nausea.
Also try eating your food cold or at
room temperature rather than hot.
You might want to avoid your
favourite foods when feeling
especially nauseous as it may lead to
a permanent dislike for these foods.
Suggestions:
• Toast, crackers and pretzels
• Yogurt
• Oatmeal, rice pudding, cream
of wheat
• Boiled / mashed potatoes,
noodles
• Baked chicken, without skin
Add pinches of dry herbs, including
basil, rosemary and oregano
• Canned peaches, pears,
carrots or other soft bland fruit
and cooked vegetables
Add flavour to cooked vegetables by
mixing in strips of bacon, ham or
cooked onion
• Clear liquids, including chicken
broth
Add soup stock or cubes to your
cooking water for rice and couscous
Minimise pungent cooking smells
by keeping the kitchen fan on,
covering foods while cooking and
opening the window, when the
weather is agreeable
Nausea
Feeling nauseous can keep you from
eating and getting enough nutrients
and energy. There are drugs called
anti-emetics that help control this
side-effect of myeloma and its
treatment – ask your doctor about
them. In the meantime, eat foods that
are easy on your stomach while you
are feeling nauseous.
Try to avoid fatty, greasy or fried foods
as well as foods that are very sweet,
• Carbonated drinks like ginger ale
• Ice chips
In summary
It is important to eat well so you have
energy to manage your disease and
its treatment; this will help you to get
as much enjoyment as you can out
of your day-to-day life. Ask your
nurse and doctor about dietary
advice and tips that they might have.
Any
questions?
 Myeloma Infoline
0800 980 3332
 [email protected]
www.myeloma.org.uk
13
LIVING
WITH
MYELOMA
Ask the nurse
by Ellen Watters RGN,, Myeloma Information Nurse Specialist, Myeloma UK
Q. I will have to attend hospital
twice a week for my Velcade
treatment. Is there any way I
can get help with travel costs?
You may be entitled to help with
travel costs to and from hospital for
National Health Service treatment.
The Hospital Travel Costs Scheme
(HTCS) is for patients who do not
have a medical need for ambulance
transport but who cannot afford the
cost of travel to and from hospital.
Your entitlement to help is based on
your circumstances such as your
level of income and your savings.
You may be entitled to HTCS if
you receive, for example, Income
Support or income-based
Jobseeker's Allowance. Some
people receiving tax credits may
also be entitled to help.
To find out if you are entitled to help
with travel costs, you will need to fill
out a HC1 'Claim for help with health
costs' form which you can get from
your local office of the Department
of Work and Pensions or your local
job centre.
You have to fill in the form giving
various details of your
circumstances. If your application is
successful, you will receive either
certificate HC2 or HC3:
• Certificate HC2 means that
you will not need to pay the following
health costs: NHS dental charges;
eye tests, glasses and contact
lenses; travel to hospital for NHS
treatment; wigs and fabric supports
• Certificate HC3 provides partial
help with some of these health costs
Certificates are usually valid for six
months. If your circumstances
14
remain unchanged after six months
then, if necessary, you can make a
new claim before the current
certificate expires. To get your travel
costs refunded you should keep your
receipts or travel tickets and your
hospital's reception desk will have
the necessary forms to claim back
expenses. You can get further
information from the benefit enquiry
line on 0800 882 200.
Q. What is the difference
between myeloma and solitary
plasmacytoma of bone?
In myeloma, myeloma cells are
spread throughout the bone marrow
in different bones. If you have a
solitary plasmacytoma of bone
(SPB), myeloma cells are localised to
one area of bone and there is no
evidence of myeloma elsewhere.
SPB is normally treated successfully
with radiotherapy and, rarely, surgical
removal. Recurrence can occur, as
can progression to myeloma. For
these reasons, SPB patients will be
monitored regularly.
Like myeloma, SPBs produce an
abnormal protein called paraprotein.
This paraprotein can be measured in
a blood test, and the level of this
protein can be used to check on the
success of treatment and to screen
for any recurrence.
It is also possible that an SPB can
occur when a patient already has
myeloma. This is relatively
uncommon and would normally be
treated as above. Patients with
myeloma may also develop an
extramedullary plasmacytoma (EMP)
(i.e. a build-up of myeloma cells
outside the bone) usually in areas of
soft tissue such as the tonsils or at
the back of the nose. An EMP is
normally treated in the same way as
a SPB.
Q. Please tell me more
about the use of radiotherapy
in myeloma.
Historically, radiotherapy had a bigger
role in the treatment of myeloma than
it does today. These days it is
restricted to the relatively rapid
treatment of 'hot spots' of bone pain,
either as an initial treatment or as and
when required throughout all stages
of myeloma.
It can also be especially useful to
treat areas of the body where a
build-up of plasma cells has
occurred within or on bone. These
build-ups are commonly referred to
as a solitary plasmacytoma of bone
and can be found, for example, in
or around the spine.
Radiotherapy can cause local
redness of the skin and sometimes
soreness in the area that has been
treated. Tiredness is common after
radiotherapy and can continue for
some weeks after treatment has
finished.
If radiotherapy is given to the
abdomen and lower back, diarrhoea,
nausea and vomiting can occur.
These side-effects are almost always
transient, preventable or treatable.
A new use of radiotherapy is being
pioneered as a way to deliver much
higher doses of radiation than usual,
directly to the myeloma cells in the
bone marrow before patients
undergo a stem cell transplant. It is
hypothesised that this may potentially
delay onset of relapse after a stem
cell transplant.
POLICY
AND
POLITICS
How will the new rules for
'topping-up' work in practice?
by Sarah Ritchie, Policy and Advocacy, Myeloma UK
drugs that may cause some
particular problems for top-ups.
In Myeloma Matters (Vol. 8 Issue 1),
we reported on the UK Government
announcement in November 2008
that the NHS in England was to lift its
ban on 'top-up' treatments with
immediate effect. Since then the
Scottish Government has made a
similar announcement, and guidance
has been produced by both
governments to tell us how the new
rules should operate.
For the very first time the rules clarify
that patients are allowed to pay
privately – either from their own
pockets or from a private healthcare
package – for a drug not available on
the NHS, without losing their right to
the other elements of their NHS care.
The rules allow patients to top-up,
but on the condition that the NHS
and private elements of the patient's
care are clearly separated in the way
that they are delivered and managed.
The rules contain a number of
guiding principles about how top-ups
should be managed within the NHS.
The following points summarise the
main principles set out in both the
English and Scottish rules:
The drug that a patient needs to
obtain privately might be given
alongside other drugs that are
normally available free on the NHS.
As a result, Myeloma UK has heard
from patients who are finding that it
is not always clear what it is they
need to pay for privately and how
this changes the way their treatment
and care is managed.
• It is important that the NHS
should not be seen to be
profiting unreasonably from
patients in these circumstances
Although the rules go some way to
explaining the overarching principles
for allowing top-ups, Myeloma UK
considers there is not enough detail
to help patients and the NHS to
understand how topping-up should
work in practice.
• Private and NHS care should be
kept as separate as possible and
be carried out at a different time
and place
A good example of the remaining
ambiguity is the reported unease
that, in order for clinicians to fulfil the
requirement in the guidance to
'exhaust all NHS funding routes'
before suggesting a patient
considers paying privately for
treatment, the existing Primary Care
Trust exceptional case system will
be overwhelmed with applications
that might not otherwise have been
made. The risk is that this will slow
up an already sluggish system which
may not be fit for purpose.
• Clinicians should exhaust all
reasonable avenues for securing
NHS funding before suggesting
that a patient's only option is to
pay for treatment privately
Further, the separation of the private
from the NHS element of treatment
may not always be straightforward.
Treatment for myeloma often
consists of a combination of different
• Where a patient opts to pay for
private care, their entitlement to
NHS services remains and may
not be withdrawn
The management of side-effects
may also become confusing when
one drug of a combination therapy
has been paid for privately.
These are just a few of many
ambiguities and concerns around
top-ups. Myeloma UK has asked
both the UK and Scottish
Governments to make the rules
clearer so that patients and all those
involved in a top-up arrangement
know exactly where they stand.
This is important so that patients,
should they choose to pay, have
timely access to treatment and
understand any changes topping-up
may make to how their myeloma
is normally managed.
Myeloma UK wants to hear
from myeloma patients who are
considering topping-up or have
already experienced it.
If you would like to discuss
your experience with us, or
have any questions contact:
Sarah Ritchie
 0131 557 3332
 [email protected]
15
PATIENT
EXPERIENCE
Hanging on for the cure
Malcolm Cole, myeloma patient, Oxfordshire
after we have gone, they have to
continue alone! Every time we visit a
hospital, it is a nightmare for them!
It was 1992 and I was given the
results of my annual company
medical. “You are in fine form and
excellent general health. However,
there is something odd with one of
the blood tests. I suggest you get it
checked out by your doctor.” I left,
knowing I had always had excellent
health, and expecting it to remain so.
Back at work the next day, I promptly
forgot about the oddity in my blood.
A year later, the annual medical report
was more explicit. You must give this
report to your doctor. This time I
followed instructions and more tests
were done. A couple of weeks later
the phone call came. “Would I come
and see the consultant? Oh, and
bring your wife.”
When you first hear the words
‘multiple myeloma’ they are
meaningless, but the words, “You
have maybe 18 months to live”
really puts life in perspective. On
the way home, we stopped off at
the sweetshop and scoffed enough
chocolates to feed a large family
for a month.
It was not long before the aches and
pains started, the bowels started
playing up and clearly, we thought
the end was coming. Surprisingly,
the monthly visits showed no
progression, but the pains continued.
In retrospect all the discomfort was a
side-effect of knowing the worst,
i.e. stress. It took many years to
accept this, but now I carry within
me a stress bottle. I have no
problems until it overflows. Then I
relax my muscles, think of the sun
and the sea, and allow the stress in
the bottle to drain away.
16
My case followed the norm. There
was chemotherapy and then a
transplant. The transplant gave me
time, so I looked for a project, a
reason to live. Our daughter was an
architect and had a dream about
building an earth-sheltered eco
house. So we sold our London
home, pooled our resources,
and found a site. My wife and I babysat, while our daughter designed
the house.
Malcolm Cole
and his wife Janet
The years went by, 1994, 1995,
1996. “This injection is to help
protect your bones.” I did not
know it at the time, but those
monthly injections were the best
medicine I had. My bones are
stronger than ever.
The roller coaster started for me
and my wife in 1998 as the figures
began to change and the myeloma
was now active. Yes, your partner is
affected too. In some ways it is
worse for them.
Time and time again there is the
hospital appointment, or a visit from
an ambulance. Sometimes it's
pneumonia – other times a more
innocuous bug, all of which need
treatment with antibiotics.
Our partners have real stress but can
do little about it, for it is generated by
us. Moreover, they also know that
My job was to decorate the house
while living in it, and keep fit with
the gardening. I had had some
chemotherapy in 2003, but the
myeloma was back at the end of
2004. They gave me thalidomide.
I continued painting, on pin cushion
feet. The doctors thought it was
trapped nerves, in both feet!
Now we know it as peripheral
neuropathy.
In February 2005, the calf of my left
leg went solid one night. I was told
to report to the hospital the next day.
I did not get home for a week, as
they fought to clear the blood clot
that had caused the leg problem and
had now moved into the lung. I was
on Warfarin for six months, until the
doctors finally agreed the clot was
caused by thalidomide. Now, when
on treatment, I take an aspirin a day
to prevent blood clots.
My myeloma returned in June 2005,
so I had a second transplant. Some
people have friends and family
visiting them every day in the
isolation wards. I laid down my own
PATIENT
house rules – an exercise bike in the
room and absolutely no visitors.
I was out in 13 days, one more day
than it took the first time around.
The house was reasonably
complete, which was just as well as
the myeloma was back within the
year. There were no existing
treatments left, but Velcade had
arrived, at least for the majority of
the world. I fought the Primary Care
Trust for three months, even trying to
contact lawyers. A starting bill of
£1000 convinced me that I could not
beat the NHS or the government. A
few days later, the consultant asked
me to attend the Royal Marsden
Hospital to check my suitability for a
manufacturer's clinical study of three
cycles of Velcade.
The study, which ended in March
2007, was a success in so far as it
rid me of 95% of the bad cells. Of
course, Velcade was never going to
be my saviour, and by August the
readings were climbing. This time
the Royal Marsden doctors initiated
an attack by putting me on a
manufacturer's Phase 1 trial of
Revlimid plus cyclophosphamide
and dexamethasone.
If I could complete nine cycles then
I would be entitled to free Revlimid for
any subsequent treatment. There
was a proviso. I had to start each
cycle within four weeks of finishing
the previous cycle.
Regrettably, my marrow has taken a
battering over the last 15 years, and
it took a lot of time rebuilding my
platelets after each cycle. By the
fourth cycle, my myeloma had
vanished from the microscope, and
EXPERIENCE
“I want doctors to
always have access to
new drugs for
appropriate patients…
the doctors get experience,
the drugs are better
understood and NICE have
the facts before they
make a decision on
drugs becoming
routinely available”
Malcolm Cole
I was in complete remission.
Unfortunately, my luck ran out, and I
collapsed one morning with an
epileptic fit. I lost the Revlimid, but it
had done its job, so I was happy.
Soon after the start of the Revlimid
trial, my local doctors suggested
I become a patient representative.
This was fabulous, for it showed they
had faith that I would be around for
a while. I represent myeloma patients
throughout the Thames Valley Cancer
Network, which stretches from
Swindon and Milton Keynes, through
Oxford and down to Reading.
I have some work to do in these
committees. I want doctors to always
have access to new drugs for
appropriate patients, with results fully
recorded. The doctors get
experience, the drugs are better
understood, and NICE have the facts
before they make a decision on
drugs becoming routinely available.
It may help avoid the debacle that
NICE had before finally approving
Velcade.
I no longer believe that having a
project helps the body to beat
myeloma, but it encourages a
positive frame of mind, and makes
it easier to keep fit. This in turn
makes it easier to cope with all the
side-effects.
I have been extremely fortunate to be
free of pain throughout my myeloma,
and I can understand that those with
continuous pain feel little inclination
to enter clinical studies, with all the
additional stresses involved.
However, I was surprised to hear
how hard it is for the doctors to find
any patients willing to join clinical
studies. Being at the leading edge
of treatment is keeping me alive and
well. My last treatment was a
resounding success for me, although
not for everyone.
It is very important that doctors
identify why these new treatments
work for some but not others.
There must be an answer. When it
is found, patients will no longer run
the gauntlet of several failed
treatments, with all the side-effects
they entail. Think of how much
money that will save the NHS!
So why are doctors left to scrounge
equipment and resources as they
attempt to solve this problem?
My wife and I want to take this
opportunity to say a sincere thank
you to the staff at the Hammersmith
Hospital, the John Radcliffe Hospital
in Oxford and the Royal Marsden
Hospital in Sutton.
17
AL
AMYLOIDOSIS
New services from
Myeloma UK for AL amyloidosis
By Eve Hallam, Myeloma Information Nurse Specialist, Myeloma UK
AL amyloidosis and myeloma are
both diseases of the plasma cells
within the bone marrow and are
similar in many ways. About
10 – 15% of patients who have
been diagnosed with myeloma have
co-existing AL amyloidosis, or will
go on to develop it.
As a disease related to myeloma,
Myeloma UK is committed to
providing information and support to
people affected by AL amyloidosis. In
the course of 2009, Myeloma UK will
launch a range of services specific to
the disease.
Currently Myeloma UK is...
Increasing the range of its printed
AL amyloidosis information
This includes:
• A new information pack for newly
diagnosed patients
• Two updated Essential Guides,
AL amyloidosis – Your Essential
Guide, and Living with AL
amyloidosis
• New Infoguides on the
current treatment options for
AL amyloidosis
• A new range of Infosheets
All of the publications are specifically
written for AL amyloidosis patients,
their family members and friends.
Helping to set up AL amyloidosis
specific support groups in the
UK. Anyone interested in starting
up a support group for AL amyloidosis
patients, their families and carers
can contact the Infoline on 0800 980
3332.
18
Funding a study into the use of
chemotherapy in AL amyloidosis.
This study, being undertaken by
researchers at the National
Expanding the amount of dedicated
Amyloidosis Centre in London, aims
AL amyloidosis content in Myeloma
to develop a network of healthcare
Matters.
professionals to promote excellence
in the treatment and research of
Establishing an annual Patient
AL amyloidosis. The study includes
and Family AL amyloidosis Infoday
the funding of an Amyloidosis
held in London. This year the
AL amyloidosis Infoday will be held on Research Nurse Specialist for at least
Friday 29 May. See below for details. two years. See page 22 for details.
Myeloma UK can provide help
getting started and raising awareness
of the group.
Adding a new section to the
Myeloma UK website dedicated to
AL amyloidosis information, including
a subject-specific discussion forum.
Stepping up the campaign for
fair and equal access to treatment
and care for all myeloma and
AL amyloidosis patients.
FUNDRAISING IN ACTION
Firefighters shave
'for Pete's sake'
29 firefighters in Grimsby have
shaved their heads to raise funds
and awareness of myeloma for
their colleague, Pete Oxley. Pete
was diagnosed with myeloma in
June 2008 and has recently
undergone a stem cell transplant
at Castle Hill Hospital, Hull.
As well as shaving their heads,
as a mark of support for Pete's
chemotherapy-induced hair loss,
some of the firefighters will run the
Great North Run later on in the year
and two of them, Steve Critten and
Andy Dixon, ran the Lincolnshire
10K run on 29 March dressed in
full uniform, including breathing
apparatus.
Steve said: "We are doing the
Great North Run in September
but thought that if we could find
something nearer to home and a
bit shorter we would have a go.
The packs we ran in weighed
about 28 pounds, and with
the breathing gear included it
was pretty tough going.”
So far the efforts of the firefighters
have brought in an impressive
£7,366. Talking about his
colleague's efforts, Pete said,
"I am over the moon with what
the lads are doing, and it is such a
worthwhile cause."
Thank you from Myeloma UK to
everyone involved in fundraising
on Pete’s behalf.
Auctioned cow boosts
coffee morning takings
At the end of last year, Carole
Johnston and her mother Phyllis
Steel organised a coffee and
Christmas shopping morning at
Thirsk Auction Mart raising over
£3,500 for Myeloma UK.
As Phyllis explained, "I couldn't
believe it. I've no idea who it was,
but would like to thank him very
much. It was so generous and a
complete surprise."Phyllis and
Carole's continued support is
much appreciated.
A heifer cow, donated by a local
farmer to raise funds for the event,
Congratulations and thank you
was auctioned the previous day
from everyone at Myeloma UK for
boosting the amount raised by £680. raising such an impressive sum.
Dan Biggane's
'Music4Myeloma' update
A few issues ago (Vol 7, Iss 6),
we reported that Myeloma UK
fundraiser Dan Biggane was holding
a series of musical events around
the South West to raise money for
Myeloma UK in memory of his
mother, Shirley Lea.
Since then Dan has held 16
concerts all over the region, covering
every conceivable musical genre
and has now smashed the £10,000
mark in his fundraising efforts. From
Jazz at St James' Wine Vaults in
Bath to Summer Soul at the Merlin
Theatre and a Punk Party at the
Cheese and Grain pub in Frome,
he has pulled out all the stops to
raise as much money as possible
for Myeloma UK.
Dan raised the money mostly
through ticket sales but also through
generous donations from Purr
Promotions, the Bayman Charitable
Trust and the Operation and
Kilmerdon's Reel People Film
Society.
Speaking about his achievements,
Dan said: "It has been a very
humbling process and I'm grateful
to everyone who has helped to
arrange a show, performed or
attended – all this wouldn't have been
achieved if it wasn't for you."
Thanks to Dan for his incredible efforts.
19
FUNDRAISING IN ACTION
Myeloma UK teams up with the Gilded Balloon
to present myeloma comedy events
Myeloma UK has teamed up with
entertainment agency the Gilded
Balloon to stage our ‘Stand up for
myeloma’ comedy events to raise
money and awareness.
When Myeloma UK started working
on their ideas for the events last
year they had a meeting with
Artistic Director, Karen Koren,
from the Gilded Balloon to put
forward their plans. On the strength
of the pitch, the Gilded Balloon
agreed to partner with Myeloma UK
and produce the events and
source comedians for the nights
free of charge.
Speaking about their involvement,
Karen said, "We were impressed
with the dedication and enthusiasm
of the team at Myeloma UK, and,
with it being a locally-based charity,
we wanted to do what we could to
support them. We hope the events
will help to raise the profile of this
little known cancer."
Myeloma UK Chief Executive, Eric
Low, said, "The Gilded Balloon has
received such high acclaim within
entertainment and comedy circles in
the UK and we feel very privileged to
partner with them. Their involvement
will ensure our comedy nights will be
a resounding success."
Myeloma UK patron, Maureen
Lipman, also expressed her delight
about the partnership: "Myeloma is
a difficult and challenging cancer
and unfortunately there is not much
time for laughter amongst all the
worry and stress of a diagnosis –
as I found when my husband Jack
was going through it. The 'Stand
up for myeloma' events will
provide light relief and a bit of
laughter, which are so important.
I hope that patients, family
members, and all their friends
come along to support one of
the events during the year."
See page 23 for
details and venues
Join Team Myeloma UK on 31 May for the
2009 Albert Bartlett Edinburgh Marathon
nutritional expert Jen Foley runs
through what to eat to get runners
into the best possible shape ahead
of the run. Watch both of these
videos on Myeloma TV at
www.myelomatv.org.uk.
Myeloma UK is proud to be an
official charity of the 2009 Albert
Bartlett Edinburgh Marathon for the
second year running. If you are not
up to running it yourself, why not
persuade a family member, friend
or colleague to take part in either
the full marathon or in a team of
four for the Hairy Haggis relay?
We expect to have over 110 runners
taking part, all wearing our bright
orange running vests, which will be
impossible to miss. We will have a
number of cheering stations through
the course including a special
dedicated Myeloma UK mile,
between the 14 – 15 mile mark,
which will be lined with Myeloma UK
supporters cheering our runners on.
20
All Myeloma UK runners will have
access to a wealth of pre-race
information and support to help with
their training plans. It will include a
video of Mel Edwards, former Scottish
international marathon and cross
country runner, providing tips for
both relay and full marathon runners.
In addition, Myeloma UK in-house
We have set our fundraising target
for the Edinburgh Marathon at an
ambitious £75,000. Reaching
a target of this size will allow
Myeloma UK to fund up to
two research grants in 2009.
If you, or anyone you know
is interested in running for
Myeloma UK, please contact:
Lorna Cunningham
 0131 557 3332
 [email protected]
MYELOMA
UK
NEWS
My working day
Eve Hallam, Myeloma Information Nurse Specialist, Myeloma UK
In the Infoline office, the phone is
king. When it rings, it takes
precedence over everything else.
My colleague Ellen, also a Myeloma
Information Nurse Specialist, takes
calls in the morning, and I take over
in the afternoon. However, we back
each other up throughout the day
taking calls on the second line.
Sometimes the phone just doesn't
stop ringing!
A recent Monday was a good
example of this. The phone doesn't
stop. Across the country the
Myeloma UK annual mailing is
landing on the doorsteps of our
service users and supporters.
This is going to be a busy day.
On the Infoline we take lots of
orders for our patient information,
sign up new subscribers to
Myeloma Matters, and talk to
patients and family members
about a variety of topics ranging
from symptoms and side-effects
to where to get the best travel
insurance.
Although most of the calls to the
Infoline are about myeloma, an
increasing number are about
AL amyloidosis.
This is my special area of interest,
and today I talked with a patient
about going to the National
Amyloidosis Centre (NAC) in London
for tests, what that might involve,
and the practicalities of getting there.
Later, I call one of the Research
Nurses at the NAC for an update
on the AL amyloidosis study that
Myeloma UK is funding. While we're
fielding calls a number of emails
arrive in our
[email protected]
address mailbox. There are
questions on peripheral neuropathy,
complications of myeloma, how to
get a second opinion, and how to
find out about local Myeloma
Support Groups. Ellen and I split the
emails and begin drafting replies.
Later in the afternoon I take a long
call from a patient who has a
multitude of questions. We don't
have a time limit on calls so I'm able
to give the caller as long as she
needs. Towards the end of the call I
outline the points we have talked
about and give her a few practical
ideas for going forward. This is a
part of the job I find most rewarding
– being able to give as much time to
patients and family members as
they need, something that is not
always possible on the ward or in
the clinic.
Between calls I work on copy for
Myeloma Matters (this article in
fact!), finish drafting some of the
new AL amyloidosis patient
information, and work on updating
the Revlimid Infoguide with the new
draft NICE guidance in mind.
At the end of the day I turn the
answering machine on, ready
to do it all again tomorrow.
Myeloma Infoline
0800 980 3332
Take part in National Myeloma Week 21 – 28 June
Get involved... To order your National Myeloma Week pack:
 0131 557 3332  [email protected] www.myeloma.org.uk/nmw09
21
MYELOMA
UK
NEWS
Myeloma UK awards two research grants
Myeloma UK has awarded two research grants for projects to be carried out at the University of Surrey and the
London-based National Amyloidosis Centre, as part of its commitment to funding research to improve the care,
treatment and quality of life of patients living with myeloma and its related disorders.
Title of research study: Information and self management of oral chemotherapy for myeloma
Study lead: Dr Anne Arber, University of Surrey
Grant award: £30,000 Start date: April 2009 Duration of grant: 18 months
Background to this research
Oral treatment is often now prescribed
as initial therapy for patients with newly
diagnosed myeloma. This has resulted
in an increasing number of patients
managing their own treatment regimens
at home. However, oral treatment
approaches have implications for both
patients and the healthcare
professional in charge of their care.
Research overview
The aim of this 18 month study is to
understand how healthcare
professionals, in particular clinical nurse
specialists (CNSs), communicate and
deliver information to myeloma patients
undergoing their first course of oral
chemotherapy, and to explore how
confident patients feel in self-managing
oral chemotherapy at home.
Patients need to understand how to
comply with their treatment regime and
when to report problems and
complications such as side-effects.
Data will be collected from patients
through a survey that will ascertain their
knowledge and confidence in the selfmanagement of oral chemotherapy.
Data will also be collected through
interviews with healthcare professionals
and through observations of
information-giving sessions with
patients. The study will also have a
focus on family members and
Information provision to patients is
central to effective self-management of
oral treatment in myeloma. How this
information is provided – and in what
form – by the healthcare professional is
the focus of this study.
carers who may be responsible for
coordinating a patient's treatment
regime.
The value of this research
The study will provide valuable
information about how CNSs and
other healthcare professionals
communicate and provide information
to patients, and provide feedback on
the tools they use to do this.
Results from this research will also
highlight any problematic areas related
to patient understanding and safe
self-management of chemotherapy,
and will produce evidence to inform
the development of good practice
guidelines for information-giving
practices.
Title of research study: A study of AL amyloidosis chemotherapy using intensive shared-care monitoring
Study lead: Dr Ashutosh Wechalekar, National Amyloidosis Centre
Grant award: £70,000 Start date: May 2009 Duration of grant: 2 years
Background to this research
AL amyloidosis is a rare and serious
plasma cell disease, closely related to
myeloma. All available treatments are
based on those used in myeloma but
side-effects and complications are
much more common and severe in AL
amyloidosis.
responses, tolerability and side-effects
to all types of chemotherapy treatment
being given to AL amyloidosis patients
who have been assessed at the
National Amyloidosis Centre (NAC).
The study will also assess patients'
quality of life before, during and after
chemotherapy.
This research study will for the first time
closely monitor patients' chemotherapy
treatment and collect extensive data
over a three year period on responses
and side-effects in a broad AL
amyloidosis patient population.
The information will be acquired by
a specialist nurse at the NAC,
substantially through the use of
questionnaires and through frequent
telephone discussion with doctors and
patients at treating hospitals around the
country. This information will be fed
back to the doctors at these hospitals
around the UK essentially creating a
new national amyloidosis network.
Myeloma UK has agreed to fund the
first two years of this study.
Research overview
Hoping to recruit over 500 patients
over three years, this will be the largest
ever study of its kind in AL amyloidosis.
This study aims to intensively monitor
22
The value of this research
Through the development of a new and
novel model for monitoring treatment
responses in AL amyloidosis, the top
line value of this research is the
potential for improvement to patient
care.
By establishing a national amyloidosis
network, healthcare professionals will
benefit from shared information about
the best way to treat patients with this
serious disease and patients across
the UK should benefit from more
informed treatment decisions.
The results from the study will help to
inform changes to current clinical
practice and complements the ongoing
efforts of Myeloma UK to improve the
standards of treatment and care for
patients with AL amyloidosis.
FORTHCOMING
Rat Race
Urban Adventure
EVENTS
Patient and Family
Myeloma Infodays
Join Team Myeloma UK to take part in
this unique team event.
Meet others with myeloma,
share experiences, learn from experts
• Edinburgh 18 / 19 July
• London
26 / 27 September
• Belfast
• Liverpool
• Sheffield
To register your place contact Lorna
 0131 557 3332  [email protected]
Stand up
for myeloma
charity comedy nights
Saturday 16 May
Saturday 20 June
Saturday 5 September
To register your place contact Kirsty
 0131 557 3332  [email protected]
or register online www.myeloma.org.uk
Join a sponsored walk with a difference –
Retail Therapy Walk
for Research
• Manchester
Comedy Store
Sunday 24 May
• Edinburgh
The Jam House
Sunday 21 June
• London
Comedy Store
Monday 5 October
Tickets £15  0131 557 3332
buy online www.myeloma.org.uk/comedy
• London
• Bristol
Sunday 10 May
Saturday 19 September
For details contact Sara
 0131 557 3332  [email protected]
www.myeloma.org.uk/rtw
23
Myeloma Matters editorial and production team
Medical Editor: Dr Gordon Cook Director, Blood and Marrow Transplantation Programme
St James’s University Hospital, Leeds
Editor: Jude Watson
Editorial support: Sara Morgan
Design: Linda Scott-McFarlane
Myeloma UK
President: Prof Gareth Morgan
Chairman: Judy Dewinter
Chief Executive: Eric Low
Patron: Maureen Lipman CBE
Board of Directors: Greg Allon, Dr Gordon Cook, Josie Dobrin, Jackie Green RGN, Peter Hunt,
Claude Littner, Andrew McAllister, Dr Atul Mehta
Myeloma Matters is published bi-monthly by Myeloma UK. The information presented in Myeloma Matters
is not intended to take the place of medical care or the advice of a doctor. Your doctor should always be
consulted regarding diagnosis and treatment. No part of this newsletter may be reproduced in any way
without prior permission from Myeloma UK
Myeloma UK
Broughton House, 31 Dunedin Street, Edinburgh EH7 4JG
Tel: 0131 557 3332 Fax: 0131 557 9785
Email: [email protected]
Myeloma Infoline: 0800 980 3332
www.myeloma.org.uk Charity No. SC 026116
National Myeloma Week 21 – 28 June