Hot Topics Oncolytic virotherapy - SPRING 2018 - Myeloma UK
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SPRING 2018 Hot Topics Oncolytic virotherapy Patient experience Spotlight on My myeloma story Jennifer Cole Younger patients Sharon Thomas
Contents
20
06 Hot Topics
Patient This edition features articles
experience 16 on oncolytic virotherapy,
myeloma through the ages
and alopecia in men.
Jennifer Cole tells her story
following her diagnosis in
Medical focus
2010. PhD student Molly Went
tells us about deciphering
genetic variation in
myeloma.
24
09 My myeloma
Spotlight on story
Being a younger patient, 19 Sharon Thomas answers
whose needs and
considerations can be Policy briefing questions about what
life has been like since
different than for older We take a look at what her husband, Joe, was
patients. the Cancer Drugs Fund is, diagnosed with myeloma.
and what it has done for
myeloma.
15
Ask the nurse
Ellen Watters, Myeloma
Information Specialist at
Myeloma UK, answers some
frequently asked questions.
DEAR
READER
Jude Leitch
Myeloma Matters Editor
Welcome to the first edition diagnosis at age 39 – we Chairman: Judy Dewinter
Chief Executive: Rosemarie Finley
of Myeloma Matters of 2018. hear the stories of people Patron: Maureen Lipman CBE
I hope you like the refreshed dealing with myeloma at Board of Directors: David Allmond, Lee Appleton, Susan
Blair RGN, Sir Frank Chapman, Dr Mark Cook, Marc Gordon,
look of the magazine. the younger end of the Vivien de Gunzburg, Prof Graham Jackson, Prof Atul Mehta.
This year I am introducing spectrum. Not to leave out
Myeloma Matters is published quarterly by Myeloma UK.
two new sections – a ‘hot the older population, patient The information presented in Myeloma Matters is not
topics’ section that will Jennifer Cole – aged 80 – intended to take the place of medical care or the advice of
a doctor. Your doctor should always be consulted regarding
allow us to explore a wide tells us her myeloma story. diagnosis and treatment. No part of this magazine may
be reproduced in any way without prior permission from
spectrum of topics relevant It is a pleasure to include Myeloma UK.
to myeloma, and a ‘policy an article on deciphering Myeloma UK, 22 Logie Mill,
briefing’ that will take an in- genetic variation in myeloma Beaverbank Business Park, Edinburgh EH7 4HG
depth look at the advantages, from PhD student Molly T: 0131 557 3332 F: 0131 557 9785
E: myelomauk@myeloma.org.uk
drawbacks and controversies Went. Molly – whose PhD Charity No: SC 026116
surrounding various policy is funded by Myeloma UK
For feedback, comments and questions
issues influencing the field of – writes with clarity about about content:
myeloma. her work studying the human Contact Jude Leitch on
This edition’s ‘Spotlight on’ genome, and the part she is +44 (0)131 557 3332 or email
jude.leitch@myeloma.org.uk
is dedicated to younger playing in helping to unpick To subscribe:
patients, who often have to the impact of variations in Contact Martyna Bejgrowicz
grapple with quite different our DNA sequence on the +44 (0)131 557 3332
martyna.bejgrowicz@myeloma.org.uk
issues to older patients. In development of myeloma.
both this section - and from I hope you enjoy this
our featured carer, Sharon edition and I encourage Call our Infoline on
Thomas, who tells her story you to contact me with any 0800 980 3332
following her husband’s comments.
www.myeloma.org.uk
Spring 2018 Infoline: 0800 980 3332 3
MYELOMA
SCOPE
MYELOMA RESEARCH NEWS
FROM AROUND THE WORLD
4 www.myeloma.org.uk Spring 2018
MYELOMASCOPE
Study identifies More ethnic diversity needed in research
a new way to kill A recently published study that analysed the genetic sequencing
myeloma cells data of 718 newly diagnosed myeloma patients has demonstrated
significant differences in mutation frequencies between patients of
Potential new drugs that block a African descent and those of European descent. People of African
safeguard used by cancer cells to descent are three times more likely to be diagnosed with myeloma,
stay alive in stressful conditions yet most scientific research on the disease has been based on
have shown promise against white populations. Due to the genetic differences between the
myeloma. Myeloma cells often populations, disease progression is different, emphasised the
have to grow under stressful lead author of the study. The study highlights the importance of
conditions as they compete for ensuring diverse patient cohorts in research to better understand
oxygen, nutrients and space the genetic heterogeneity of myeloma, and role of ancestry and
during their rapid growth and biology on its outcomes.
division. HSF1 is a molecular
switch that regulates the levels of
hundreds of proteins involved in
a cell’s response to stress, and is Aspirin may not New monoclonal
highly-activated in many cancer reduce risk antibody drug
types. Myeloma UK-funded
researchers at The Institute of
of VTE in myeloma proving promising
Cancer Research in London Myeloma patients are at high in myeloma
analysed genetic information risk of developing venous
from more than 250 myeloma GSK2857916 is a monoclonal
thromboembolism (VTE), and
patients. They showed that when antibody drug against a
current guidelines recommend
HSF1 was genetically depleted in protein called BCMA, found at
preventative (prophylactic)
myeloma cells in the lab, those higher levels on the surface of
treatment.
cells died – indicating that HSF1 myeloma cells.
In a retrospective study
is indeed important for their In addition to targeting BCMA,
presented at the most
survival. The researchers then GSK2857916 also carries a ‘toxic
recent American Society of
treated myeloma cells with two payload’ of a molecule called
Hematology Annual Meeting,
prototype drugs designed to auristatin F to specifically kill the
researchers carried out a
block the HSF1 pathway – they myeloma cells. This strengthens
retrospective analysis of 4,892
found that the inhibitors killed the drug’s effects.
myeloma patients. Of these,
myeloma cells in the lab and In an early phase trial,
1,888 and 862 patients received
blocked the growth of human GSK2857916 induced a response
aspirin and warfarin therapy,
myeloma tumours in mice. The rate of 60% in relapsed/
respectively, after diagnosis. A
researchers now plan to carry out refractory myeloma patients
total of 586 patients developed
clinical studies to look into the who had had several previous
VTE. After multivariate analysis
possible benefits of an lines of treatment.
that adjusted for various
HSF1 inhibitor in people.
VTE risk factors – such as In November 2017, the FDA
history of VTE and use of granted GSK2857916 a
immunomodulatory drugs – breakthrough therapy
researchers found no association designation.
between aspirin and VTE risk
This means that the FDA will try
Keep up-to-date reduction. However, a positive
prioritise the regulatory passage
on myeloma news trend toward risk reduction of
of GSK2857916 – undoubtedly a
VTE was noted with warfarin.
by visiting positive thing for myeloma – but
Prophylactic treatment with
www.myeloma.org.uk without removing the need for
aspirin may not be effective strong future trial evidence.
or sign up to our enough for myeloma patients
email newsletter at at high risk of developing VTE,
www.myeloma.org.uk the authors concluded.
/newsletter
Spring 2018 Infoline: 0800 980 3332 5MY LIFE WITH
MYELOMA
NAME: Jennifer Cole
LIVES: Leicester
AGE: 80
I was born in Leicester in 1937 and grandchildren, a granddaughter My friend Anne, who still lives
have lived in the city all my life. I who is now 20 and a grandson opposite me, went with me. I
have one sister Constance, who who is now 12. was given a folder with lots of
is now 84. We were a very close In 2010 everything changed. information and the consultant
family, with lovely parents and very patiently explained the
grandparents. Every Monday evening I went answers to my many questions.
with a friend to a meeting where
I had a good education and left I had blood and urine tests,
different speakers would talk on
school aged 16 and went to work blood pressure and bone marrow
a variety of topics or show films
in a bank. I had several holidays samples taken and an X-ray
or sometimes have a quiz. We
abroad with friends and I was skeletal survey.
always walked to the meeting
very content. I met my husband but there was a slight hill to climb
Peter in 1961, we married in 1963 for about 15 minutes. On several The GP told me my
and I continued working at the
bank until 1965.
occasions I had to keep stopping blood had a quite high
to get my breath and my friend
We had two sons, James was thought I should see my GP for a
level of something
born in 1966 and Edward was check-up. I was prescribed iron called ‘paraprotein’ and
born in 1968. Our eldest son tablets for anaemia and asked I would probably be
was very into sport, especially to return in a month. At my spending a lot of time
swimming, and he competed second appointment I was still
at the hospital. I had an
abroad in several galas. Our anaemic and my doctor thought
youngest son was not quite as it advisable to get a blood test. illness called ‘mileomo’
robust and he had many chest The GP told me my blood had
or something. I had
problems. At the age of 13, he a quite high level of something never heard of it before.
became diabetic and our family called ‘paraprotein’ and I would
life really changed. probably be spending a lot
On April 15 I had an appointment
When the diabetes consultant of time at the hospital. I had
with the senior consultant,
from the Leicester Royal Infirmary an illness called ‘mileomo’ or
Dr Mamta Garg. Dr Garg said
came to our house to show something. I had never heard
I needed some tooth roots
Edward how to inject himself of it before. The GP said I
removed before I could start
with insulin, he told me never to might have to have a course of
on treatment and would I be
sympathise but, rather, always be chemotherapy.
prepared to get them removed
very positive. I felt a little shocked and said that afternoon. I was then sent
In 1991 my husband was able ‘do you mean I have cancer?’. to the maxillofacial department
to retire at the age of 60. He The GP said everything would where they were taken out.
was a keen gardener and grew be explained to me when I went When I returned to see Dr Garg,
chrysanthemums for showing. to the hospital. she said ‘Well Mrs Cole, you have
Edward got married in 1996, so March 15 2010, Leicester Royal had quite a day’. I can remember
we now had a lovely daughter- Infirmary, Haematology Clinic, thinking, what on earth am I
in-law and then two delightful 10:30am. My first consultation. facing next?
6 www.myeloma.org.uk Spring 2018MY LIFE WITH MYELOMA Spring 2018 Infoline: 0800 980 3332 7
MY LIFE WITH MYELOMA
I started CTD treatment on April everything and James came My paraprotein stayed low until
23 2010, one day before my 73rd home from Australia (where he November 2013, before it began
birthday. now lives) for the funeral and to rise again.
I began to feel very unbalanced stayed with me for a while. I started in March 2014 to take
and wobbly and my left ankle I was told I could no longer live lenalidomide (Revlimid®) and
kept on swelling up. I was unable on my own because of my illness dexamethasone and I also
to go anywhere on my own and but I decided I could. I loved started to have a zoledronic
I dared not cross a road at all. I my little house that we had acid (Zometa®) drip instead of
then started to lose my taste. I shared for nearly 50 years – it pamidronate.
enjoyed eating out but now I was was full of so many memories I continued to see Dr Garg my
unable to taste anything - roast and I decided I would be able to consultant every month and my
beef, chicken, fish and chips, manage. My friend Anne, who paraprotein again began to drop.
cream gateau, cream cakes - always went to the hospital with
everything tasted so bland. I felt me, said I was to ring her if I ever In November 2014 I was admitted
very irritable. In one month I had needed help. to hospital, very short of breath
changed from being a normal, and with pain in my left calf. I had
happy, healthy person into a CT scan and was found to have
someone completely different. I In one month I had DVT in my leg but was allowed
explained this at my next clinic changed from being home after 2 days and was put
onto anti-coagulants.
appointment and the doctor a normal, happy,
halved my dexamethasone from healthy person into By April 2015 my paraprotein
20mg to 10mg. had dropped right down and
someone completely I was again in remission. I still
I seemed to feel better
immediately. My taste started
different. I explained kept getting colds and throat
to return and once again I could this at my next clinic infections but the antibiotics
enjoy my meals. I began to feel appointment and always seemed to clear them.
normal again, I had quite a few the doctor halved I am still taking lenalidomide
infections but these always and dexamethasone. I have
my dexamethasone
cleared with antibiotics. more difficulty in walking than
from 20mg to 10mg. I used to but I feel fairly
I was responding to my treatment,
my paraprotein was reducing
I seemed to feel better confident using a stick.
and at the end of October 2010 immediately. I still feel positive, I have been
the CTD was stopped as I was in given so much help from my
partial remission. family and friends.
I started to wear a personal alarm
In January 2011 Peter was and I felt quite positive. Then my I enjoy knitting toys and hats for
diagnosed with a heart paraprotein began to rise. premature babies. I do quizzes
condition, but was able to and I read a lot, watch certain
I started on bortezomib
continue gardening, although he TV programmes. I do not think
(Velcade®) injections at the
soon began to get tired and had I have been depressed. If I feel
beginning of January 2013,
started to lose weight. down sometimes, I always think
twice every week. After only
I was still in remission, although of my young son and how he
four injections I woke one night
I was sent to the nephrology managed to cope at the age of 13
with severe stomach pains. I was
department as my kidneys with diabetes.
admitted to the haematology
were causing concerns and ward and was treated for Most of all I am being treated
the pamidronate drip was neutropenic sepsis but was by a superb, wonderful
discontinued. allowed home after six days. haematology team with their
In 2012, apart from a couple consistent kindness and
I was able to have six more
of chest infections, I had an professional approach - I owe
injections of bortezomib but
enjoyable year…until November. them all so much.
then I started to get peripheral
On 9 November Peter collapsed neuropathy and it was Myeloma is a very unpleasant
and was taken to the Loros discontinued. My feet felt as cancer but I feel so lucky to
Hospital in Leicester and on 11 if I had heavy blocks of wood have been helped by so many
November he passed away. It on the end of my legs and my wonderful people. I hope any
was just 4 months before our hands were tingling and painful. patients, in my age group, will see
Golden Wedding Anniversary. I also began to lose my taste there are still things that can be
Edward was helping me with again. enjoyed in life.
8 www.myeloma.org.uk Spring 2018SPOTLIGHT ON BEING A YOUNGER MYELOMA PATIENT Spring 2018 Infoline: 0800 980 3332 9
SPOTLIGHT ON
INTRODUCTION
BEING A YOUNGER
MYELOMA PATIENT
For myeloma, It would be accurate, therefore, Financial concerns, an abrupt
to say that myeloma can interruption to personal or
like most cancer generally be considered a cancer professional ambitions, possible
types, incidence of older people. infertility, trying to fit in work
and/or raising a young family
(frequency) increases Nevertheless, in recent years
around treatment – whilst
around 285 people under the
with age. age of 50 are diagnosed with psychologically dealing with a
myeloma in the UK annually, serious, life-limiting diagnosis –
On average, each representing just shy of 4% of are just a few of the matters that
year in the UK almost the diagnoses. The youngest might set this group apart.
half (45%) of new was in the 15–19 age bracket*. In this ‘Spotlight on’ we hear
from four people – two patients,
myeloma diagnoses Despite similar symptoms and
a carer and a healthcare
complications of the disease,
are in people aged the needs and considerations of professional – who are all dealing
with myeloma from the younger
75 and over. this younger group of patients
end of the age spectrum.
can be quite different to their
older counterparts.
all statistics are from 2013–2015
*
data from Cancer Research UK.
10 www.myeloma.org.uk Spring 2018SPOTLIGHT ON
Top issues
facing
younger
patients
#1
Financial
THE JOB ANGLE concerns
by Robyn Gorstridge
My journey started in I underestimated how long it
2013 when I was a keen takes you to get over this type
runner and I had started of transplant, mainly due to graft #2
versus host disease (GVHD).
to get lower back pain.
To cut a long story short Luckily for me, my employers
Disruption
I was diagnosed with a have been fantastic and I to working
plasmacytoma on my received time off under disability
adjustment leave and six months
life
sacrum bone for which I
full sick pay. At the moment, they
had radiotherapy.
allow me to work from home four
I was then being monitored days a week and to go into the
every 3 months until I was office one day. This all sounds
diagnosed with myeloma, and great, but for me it’s a real effort #3
in 2015 I had autologous and
donor transplants. When all
to stay motivated due to the Raising
fact I’m not keen on working at
this was going on my main aim home and the work they can a young
was getting back to my life
as it was and mainly getting
provide is not what I was trained
to do. I feel I am slowly losing the
family
back to my job. It wasn’t just knowledge from my training and
for the money - however, we it is so frustrating because I feel
did need it to support a young I’m stuck in Groundhog Day. I
family - but for my sanity. I
had started my job in 2013 and
know I am very lucky as I’m still #4
in remission and my GVHD is
I was very excited as it was stable and I should learn to take Potential
a big change to my previous
role and was right out of my
things one day at a time. My new
aim now is to embrace all the
loss of
comfort zone. I had to be away good things that happen, and not fertility
for weeks to be trained whilst I to worry about things I cannot
was going through my myeloma control. I know I will be able to get
treatment (bad timing or what?) back to work but I have to accept
However, through thick and it’s not as it was before. Maybe,
thin I passed the training and though, I can make it better for #5
was looking forward to putting
it all into practice after my
me - my motto is definitely ‘stay Long-term
positive’ as it has helped me
donor transplant. Unfortunately through the last five years. treatment
effects
Spring 2018 Infoline: 0800 980 3332 11SPOTLIGHT ON
THE CARER ANGLE
by Fiona Dodd
“You’re not unreasonable to now while you can.” Philip has children’s inheritance. In case I
hope for 10 years” said the retired. He can’t work anymore marry again. No wife should have
and I am supporting the family to discuss her future widowhood
doctor sitting by Philip’s
financially. I’ve had to stop with her husband. No husband
bed. What?? 10 years?? I contributing to my own pension should have to contemplate his
was only 39, Philip 46, and for now to pay for today. wife marrying again.
our children under 10. 10 Work doesn’t just provide an We don’t plan more than 12
years is nowhere near income, it’s a friendship group, months in advance. Even that
enough. That was April and mental stimulation. I am feels bold. As the children
2012, and the first week of acutely aware that I still get to have grown, we’ve discussed
our new myeloma life. enjoy that. Some weeks Philip myeloma with them, but we’ve
hardly sees anyone other than not confronted the terminal bit
We are six years into those 10. the immediate family. It’s hard of the diagnosis. Equally, we
Philip has run through most and sad to see those horizons don’t lie and pretend everything
conventional treatments and is shrinking. is fine when it obviously isn’t.
now on a trial. He has only had
12 months drug free. I’ve watched my husband The shortened horizons and
change through his treatments focus on now do have benefits.
We met when I was 20, and from a strong, active and Philip says his job now is us. He
always joked that Philip healthy man to broken and keeps the house cleaner than
supported me through full of chemo and steroids. We I ever could. My dinner is on
college, and I was his pension have had those difficult the table as I get home from
plan. We’d travelled before the conversations. Most of which work. We properly talk to each
children arrived, and planned to end with laughter. Because the other. And laugh. Weekends
go again when we retired. Since alternative is too hard. are truly family time. We are a
the diagnosis, though, those close family and I believe the
dreams of travel won’t come Our myeloma world is a limbo,
an eternal present. There is A children have hugely benefited
true, at least not for us both. from having Dad home every
With 4-weekly trips to hospital future, but we don’t know how
long OUR future is. Whilst we day after school, and seeing the
we can’t go away for long, and traditional roles reversed.
we can’t afford for me to give up enjoy our present, we know that I
work to spend more time with may have a longer future without Myeloma has stolen our future.
him. We have had a few holidays, Philip than with him. We’ve Ironically it has given us a good
on the advice of the doctor: “Go drawn up our Wills to protect the present.
“ There is A future, but we don’t
Louise Sullivan Photography
know how long OUR future is.
Whilst we enjoy our present,
we know that I may have a
longer future without Philip than
with him. We’ve drawn up our
Wills to protect the children’s
inheritance. In case I marry again.
No wife should have to discuss
her future widowhood with her
husband. No husband should
have to contemplate his wife
marrying again. ”
12 www.myeloma.org.uk Spring 2018SPOTLIGHT ON
THE PARENTING ANGLE
by Alex Bicknell
My older boys were six certainly wouldn’t want them will bring the potential for a
and four when I was trying to understand what it’s cure. But that cannot dispel my
like for me. Maybe when they darkest thoughts and fears.
diagnosed. The youngest
are grown up, they will reflect My parents have been
was a baby. At first it felt on it. Hopefully I’ll be there to amazingly supportive to us,
like persecution that this discuss it with them. I anticipate since my diagnosis, in ways
should happen to our more awkward questions will I cannot repay. I worry that
young family. I worried a come when they are teenagers. I won’t be there when my
lot about the impact on But I am not scared of those children and grandchildren
conversations. I’d love to shelter
them. Over time, we’ve need me.
them from it, of course, but I
learned to live with cannot. We’ve made a real effort to
myeloma, and I think we embrace life, these last few
I’ve learnt I must make some years. We’ve focused on family
are a happy, strong family, space for me, within my own experiences and having some
despite it. family. In some ways I’ve had to real adventures. The school
The boys know that my “sore become more selfish. It’s hard agreed for us take them all
bones” is myeloma. Cancer. not to feel guilty, especially out of class for two months
They know it kills and cannot when the weight of domestic which we spent backpacking
be cured. I’ve tried to talk pro- responsibility falls on my wife. in Central America. Those
actively with them. It’s a lot for Myeloma stole our dreams. times are precious.
them to take in, but better that Even if I live to a grand old age,
it comes from me than from the we will never regain the ability
playground or online. to take life for granted. We
Children live in the present. don’t have the casual comfort Read more from Alex
I don’t believe my myeloma of assuming we will grow old through his blog at:
troubles them, except when together. It’s hard to reconcile dialmformyeloma.
the effect on me is more to that.
blogspot.co.uk
visible - viruses, treatment, It’s difficult, for me, when
hospitalisation. That’s when conversation turns to my
I worry for them. children’s future, to what they
As far as possible, I want might become. I’m an optimist.
them to ignore my myeloma. I I believe new treatment options
“ It’s difficult, for me, when
conversation turns to my
children’s future, to what they
might become. I’m an optimist.
I believe new treatment options
will bring the potential for a cure.
But that cannot dispel my darkest
thoughts and fears. My parents
have been amazingly supportive
to us, since my diagnosis, in ways
I cannot repay. I worry that I
won’t be there when my children
and grandchildren need me. ”
Spring 2018 Infoline: 0800 980 3332 13SPOTLIGHT ON
The healthcare professional view
Dr Ceri Bygrave is a consultant haematologist who has worked at the University
Hospital in Wales since October 2014.
Myeloma is a heterogeneous to requirement for treatment infections for those who
diagnosis that is difficult is unbearable, resulting in the previously lived a fit and healthy
for patients to accept and maxim of ‘watch and wait’ being normal life, these problems
understand at any age. Whilst converted to ‘wait and worry’. can limit the patient’s ability
myeloma remains a disease For those with symptomatic to function at their previous
of the elderly, with a median disease, despite rapid and level in society. In addition,
age of diagnosis of 69 years, promising developments in treatment side effects such as
approximately 2% of myeloma the treatment of myeloma, it peripheral neuropathy can lead
patients are diagnosed under remains incurable. Therefore, the to reduced physical function,
the age of 40. For younger diagnosis carries a high risk of and treatment with steroids can
patients the impact of this news shortening a patient’s life, which lead to weight gain, insomnia
can be particularly devastating. could in younger patients be by and devastating mood swings.
To the lay person it can be a factor of many decades. This All of these factors may lead to
difficult to comprehend the lost time and tragic feeling of a reduced capability to work,
difference between smouldering inevitability is a source of anxiety care for a family and enjoy
and symptomatic disease, or that can never truly be allayed. leisure activities and close
the relapsing-remitting nature relationships. Sexual function
of myeloma. The diagnosis of The damaging physical effects can be reduced and is often
asymptomatic or smouldering of myeloma or its treatment can a subject that is neglected or
myeloma at a younger age may have severe consequences for hard to raise. The challenge for
at first be seen as fortunate younger patients. Whether it is healthcare professionals is to
compared to active myeloma deformity or disability due to identify measures to improve
requiring treatment. However, bone disease, confinement to the outlook for younger patients
many patients report that the dialysis for those with kidney and minimise the impact of
agony of the unknown in relation disease, or susceptibility to these factors.
“ Honesty is a key requirement, as is the
provision of support and information
regarding prognosis. However, at the same
time, openness must be balanced with
the ability to maintain hope - such that
whatever duration of life is left can be of
the highest possible quality. This requires
a strong doctor-patient relationship,
supported by a team of relatives and
dedicated clinical nurse specialists and
clinical psychologists. Finally, and perhaps
most hopefully: the younger a person is
diagnosed, the higher the chance of them
living to see a cure. This can be used as
motivation and incentive to carry on
when the road is hard. ”
14 www.myeloma.org.uk Spring 2018Ellen Watters RGN Myeloma Information Specialist, Myeloma UK
What is a portacath? How often
A portacath is a type of is to be inserted is numbed) and should I take my
central line used in patients is completely enclosed in your temperature?
who are having high-dose body. The chamber will show as
therapy and stem cell a small bump underneath your Myeloma patients are more
transplantation, or occasionally skin which doctors and nurses likely to develop infections
other types of treatment which will use to take blood or to give than the general population.
need to be given intravenously chemotherapy and other drugs A high temperature (of above
(into a vein). through. A portacath can stay 38°) may be one of the
in place for as long as is needed first signs that you have an
It consists of a thin soft tube
and prevents the need for infection.
(catheter) which is attached
to a small chamber (port) – repeated injections. Generally patients would only
the tube then goes into a vein Research has suggested that be expected to check their
in your chest. A portacath is portacaths are less likely than temperatures regularly if they
inserted by a doctor or a nurse other central lines (such as were on treatment and they
under local anaesthetic (the PICC or Hickman lines) to had low levels of neutrophils
skin of the area where the port become infected. (a type of white blood cell
important in fighting infection)
or if they felt unwell (even when
Why does hypercalcaemia not always in remission).
occur at relapse? Patients on treatment, who
have low neutrophils and who
Sometimes when myeloma is myeloma (i.e. the myeloma feel unwell, may be asked to
active it can have an impact becomes active again) it may check their temperature every
on the bones, weakening them not present or behave in 4 to 6 hours and to report it if
and leading to a release of exactly the same way as on it goes above 38°.
calcium from the bone into previous occasions. So, for
the bloodstream. A higher instance, a patient who had
than normal level of calcium significant bone damage at
To find out more call
in the bloodstream is called diagnosis can go on to develop
hypercalcaemia. no bone damage at subsequent
the Myeloma Infoline
relapses. on 0800 980 3332 or
We know that myeloma is very email askthenurse@
individual – some patients will It is important that relapse is
myeloma.org.uk
experience bone damage and identified as soon as possible
others will not, or not to the and, ideally, before bone
degree that hypercalcaemia damage and hypercalcaemia
occurs. – or any other complication
We also know that each time of active myeloma – occurs.
an individual relapses with
Spring 2018 Infoline: 0800 980 3332 15MEDICAL FOCUS Deciphering genetic variation in myeloma BY MOLLY WENT PhD student at The Institute of Cancer Research, London 16 www.myeloma.org.uk Spring 2018
MEDICAL FOCUS
PhD student, Molly in myeloma patients when Deciphering genetic
compared to healthy individuals. variation
Went, works in Professor This is known as a genome-wide
Richard Houlston’s lab at association study (called The human genome contains
around 20,000 genes. These
The Institute of Cancer a 'GWAS' – see Figure 1). A
are the instructions for how
GWAS starts with a few cells
Research in London. from individuals in our study - to make a human being. The
Here, she discusses her usually from a blood sample. presence of variants inside a
gene can act like a ‘typo’ in a
work which explores We can pull the DNA out from
set of genetic instructions which
this cell and look at many of
how inherited variations may cause a problem in how the
the SNPs in their genome. In
in DNA impact on each individual we note whether code is read and understood
by the cell. For example, a
the risk of developing they are ill or healthy and which
variant they have at a SNP site. protein called p53 has an
myeloma. important role in preventing
A typical experiment which a potentially cancerous cell
The human genome contains the a scientist may conduct in a
blueprint by which to construct from growing. Studies have
lab starts with a question and shown that variations in the p53
a person. It is written in a code hypothesis e.g. does drug X
known as DNA and all two gene can result in the protein
harm cancer cells? The scientist being constructed incorrectly,
metres of this DNA is wound conducts their experiment,
up into each of our microscopic preventing it functioning
gathers results and repeats the properly and, as a result, a cell
cells. We inherit 50% of our process a few times to gain some
DNA from our mum and 50% continues to grow and a cancer
confidence in their data before forms.
from our dad. While the basic drawing their conclusions. A
building blocks of a human are GWAS allows us to perform many Interestingly, adding the DNA
the same – we all have hearts, experiments in one go - each in all of our genes together
heads, skin, etc. – it is clear that variant which we examine has the only accounts for around 2%
we have differences in the way hypothesis “Is this SNP seen more of the genome. So what is the
we look and the way our bodies frequently in myeloma patients?”. other 98% of our DNA doing
work. We display variety on a In fact, we can typically examine 1 there? While genes can be
genetic level too and the study million or more SNPs in a GWAS! thought of as the instructions
of this variation in our DNA, its for how to build a human, the
inheritance from our parents, A downside of this is that we remaining DNA is thought to
and the consequence of such, is need to perform the experiment be responsible for regulating
known as genetics. In my PhD, I many, many times over in lots how genes are read and
study the effects of the variation of different individuals in order interpreted. Specifically, regions
in our DNA code which we inherit to have confidence in our data. of DNA, appropriately termed
from our parents. For this, we are very grateful to ‘promoters’, can promote the
all the patients, both here and reading of a gene, similar to
Discovering genetic with our collaborators overseas, a capital letter at the start
who sign up to take part in trials
variation of a sentence. There are also
and provide us with genetic data regions, again, appropriately
One type of variation on our to examine. There have been called ‘enhancers’, which
genetic code is the single five myeloma GWAS conducted enhance the reading of a gene,
nucleotide polymorphism (SNP; so far involving around 6,000 and these are often specific to a
pronounced ‘snip’). A SNP patients and 20,000 controls certain type of cell.
occurs when one of the DNA from many countries, including
letters is replaced with another the USA, the Netherlands, Variation in these regions
and they occur about once in Iceland, Sweden, Norway, outside of genes can also be
every 300 nucleotides (the basic Germany and the UK. These problematic, as they can change
structural unit of DNA). While GWAS have produced 17 SNPs the emphasis which is placed on
these are found commonly in the which are seen more frequently the reading and interpretation of
population and can be harmless, in myeloma patients than healthy the genes, like turning a volume
they may be related to disease. individuals. Our next task, and dial up or down. A SNP in an
The subject of my recent work one which I and others have been enhancer region might make the
is on the genetics of myeloma, attempting, is to understand the reading of the gene louder. This
to find out whether certain role of these SNPs and how they can become a problem when
SNPs occur more frequently are related to myeloma. that gene is important in cell
Spring 2018 Infoline: 0800 980 3332 17MEDICAL FOCUS
growth; i.e. if the gene is read collect information, for example, DNA prospects
too loudly, the signal for a cell to on which genes are more
I am excited by the role that
die cannot be heard and instead present than others and then
genetics plays in understanding
the cell continues to grow and link this back to the individual’s
cancer risk and informing
divide. Unrestrained cell growth DNA sequence.
cancer biology. DNA, intrinsic
is a hallmark of cancer. In fact, Typically, I’ll spend my day to genetics, is a wonderful
the problem of a SNP lying in working on a High Performance molecular structure: it is stable
an enhancer was investigated Computer (HPC). The datasets for hundreds, if not thousands,
in myeloma by a former PhD involved in many genetic of years and has a simplicity and
student in my lab. Her study analyses can be vast and would veracity about it which can be
opens opportunities for greater quickly overwhelm a standard lost as we explore higher levels
understanding of myeloma desktop PC. A HPC, however, of cell biology. Our genome,
biology which can inform future is built for exactly this purpose. written in elegant DNA code,
treatments. A typical PC may have space contains the information to
for 4GB RAM memory, while a determine how we are made
Dynamics of genetic computer that makes up our and how our cells behave. As a
variation HPC has space for 256GB RAM result, I believe that the answer
Myeloma arises when a plasma memory. Bear in mind that to why a cell becomes cancerous
cell, a part of our immune system, the HPC is then made up of 54 fundamentally lies in our DNA
goes awry. Normal plasma cells computers, each with these sequence. It is for this reason I
produce antibodies to fight specifications, and you can remain fascinated on a day-to-
infection, while a myeloma cell see why they are often called day basis by the work that I do.
produces lots of redundant supercomputers! I enjoy the logic I hope to continue work in this
antibody protein. Pinning down that analysing these datasets field beyond my PhD and look
exactly when genetic variants involves and feel satisfied when forward to seeing the impact of
have their effect is a key step in I discover new and intriguing discoveries in myeloma genetics
determining how they influence results. In the future I will move in the near future.
the progression of a normal from the computer into the
plasma cell to a myeloma one. laboratory, to study the role that Follow Twitter updates about
I can study experiments from the discovered myeloma genetic research happening in the
myeloma cell models, plasma cells variants play inside a cell. Houlston lab @HoulstonLab_ICR
and naïve B-cells (very young
cells before they have grown
and developed into a plasma
or myeloma cell) to investigate
the potential of genetic variants
to act at different stages of cell
development.
Alongside datasets from
experiments on cell lines,
I also rely heavily on data
collected from patients in The
Royal Marsden Hospital. While
datasets which are collected
from myeloma cell models and
healthy plasma cells play an
important role, it is essential that
I can look at patterns in data
from myeloma patients. Blood
and bone marrow samples
are routinely collected from
myeloma patients. A small
extraction from these samples
(from consenting patients) can
be processed in the myeloma Figure 1. A genome-wide association study. The genetic variation in healthy individuals and
individuals with a disease can be compared at DNA sites.
laboratory. It is possible to
18 www.myeloma.org.uk Spring 2018THE CANCER DRUGS FUND
BY SHELAGH MCKINLAY
What is the Cancer Drugs The CDF can be thought of as that we understand better how
Fund? part of the NICE process for drugs work in a wider patient
reviewing cancer drugs, providing population.
The Cancer Drugs Fund (CDF) NICE with a third option when
is a pot of money which However, the evidence that
appraising cancer drugs. NICE can be collected can be
provides cancer patients in can say:
England with faster access to somewhat basic. It may, for
the most promising new drugs. ■■Yes – the drug should be example, struggle to take into
routinely available on the NHS account important quality of
The CDF only applies to England. life issues and information
However, Wales has a New ■■ No – the drug should not be
routinely available on the NHS on side effects. And, despite
Treatments Fund which also driving earlier access to cancer
aims to speed up access to the ■■Maybe – the drug is drugs, it doesn’t address some
latest drugs, but which is not recommended for use within of the underlying reasons
exclusively aimed at cancer. the CDF for a set time period why clinically effective drugs
In Scotland there is the New while more evidence on the do not get through the NICE
Medicines Fund for people with drug is collected. NICE will process (for example, due to
rare or incurable conditions, use the CDF route if it thinks poorly designed clinical trials
including cancer. Unfortunately, that a drug shows promise and a lack of early discussion
no such dedicated fund exists but there isn’t enough between pharmaceutical
in Northern Ireland. evidence for a straight “yes” companies and NICE).
The CDF budget for 2017–2018 decision
is £340m. When taking this 'maybe' route What has the CDF done
through the CDF, NICE will look for myeloma?
What is the CDF trying to again at the drug, usually after
Myeloma has had two very
achieve? two years or so, to consider the
welcome approvals via the CDF:
additional evidence that has
The CDF aims to make promising in December 2017, ixazomib
been collected before making a
cancer drugs available to patients (Ninlaro®), lenalidomide
final yes or no decision.
before they are fully approved for (Revlimid®) and dexamethasone
use on the NHS by the National – the first time that a ‘triplet’
institute for Health and Care
The Good and the Bad combination including two
Excellence (NICE). It has three of the CDF novel drugs was approved for
key objectives: Thanks to the CDF, new drugs use in myeloma in the UK; and,
■■ Provide patients with faster which have - in recognition of in January 2018, daratumumab
access to the most promising their promise - received early monotherapy (both approvals
new cancer drugs licences from the European are for particular subgroups of
licensing body now have a patients).
■■ Help ensure more value better chance of getting to
for money for taxpayers In both cases the immaturity
patients in England faster. of certain aspects of the data
■■Offer pharmaceutical The CDF also encourages presented to NICE meant that
companies who price their the pharmaceutical industry it was very unlikely that they
drugs responsibly a new to offer their best price, and would have been approved
fast-track route to NHS funding provides a chance to collect without the CDF.
“real-world” evidence to ensure
Spring 2018 Infoline: 0800 980 3332 19MYELOMA 20 www.myeloma.org.uk Spring 2018
HOT TOPICS
ONCOLYTIC VIROTHERAPY
A NEW ERA IN MYELOMA TREATMENT?
by vassiliki fotaki
Oncolytic virotherapy falls other viruses in order to engineer myeloma is being examined in
under the broad umbrella additional oncolytic viruses. different clinical trials.
of immunotherapies – In principle, oncolytic Reovirus (respiratory enteric
treatments that boost virotherapy is a great approach orphan virus) is a naturally
one’s own immune system because it can specifically target occurring oncolytic virus which
to kill cancer cells. As the cancer cells at the same time seldom causes any symptoms.
term indicates, oncolytic as amplifying and spreading its Reovirus can attack specific
virotherapy relies on action to neighbouring cancer cancer cell types, including
cells. myeloma cells.
the use of viruses to
specifically infect and kill In addition, unlike many other Reolysin® is a reovirus variant
cancer cells. treatments for cancer, oncolytic currently used in different
virotherapy causes minimal side- myeloma clinical trials. Myeloma
How does this novel effects by targeting the cancer UK launched the MUK eleven
therapeutic approach work, cells and leaving the normal, clinical trial in 2017, in which the
and how is it relevant to non-cancerous cells unaffected. role of Reolysin in combination
myeloma? But, as with everything, there with either lenalidomide
are certain obstacles. (Revlimid®) or pomalidomide
Viruses – the basics (Imnovid®) is being examined in
The main obstacle is the relapsed myeloma patients.
Viruses are tiny infectious
accurate delivery of the
particles made up of genetic Oncolytic virotherapy is an
oncolytic viruses to the cancer
material (DNA or RNA) and expanding field of study and
cells: while en route to their
proteins. When a virus replicates, in the future it may herald in a
target, they may be eliminated
it creates multiple identical new option in the treatment of
by the patient’s own immune
copies which then escape from myeloma. For more information
system. This problem is
the host cell, bursting and killing on future treatments and trends
intensified by the fact that
it. The newly released ‘army’ of in the myeloma landscape,
patients usually already have
viruses are then ready to 'attack’ watch this ‘hot topics’ space.
antibodies against many of the
neighbouring cells. In response,
naturally-occurring oncolytic
the host’s immune system is
viruses. This results in the virus
directed towards destroying
the virus.
being eliminated soon after DID YOU
KNOW?
being administered, resulting in
How oncolytic viruses limited therapeutic action.
are used to treat cancer To overcome this, scientists are
developing different methods Viruses have no capacity
Different viruses infect specific
to shield the virus and protect it to multiply (replicate)
cell types and some viruses do
from the host’s immune system. independently. They instead
not harm their host. So-called
Drugs that suppress the immune depend entirely on the
oncolytic viruses cause very
system can also be administered ‘machinery’ of their host cells
few or no symptoms to normal
with the virus to reduce the to survive and replicate.
human host cells, but are able to
host’s immune response and To-date there are only two
take advantage of the abnormal
limit the destruction of the virus. approved oncolytic viral
functions of cancer cells, allowing
them to successfully replicate. drugs: one for the treatment
Oncolytic virotherapy of head and neck cancer
Scientists have identified naturally applied to myeloma (approved in 2006), and a
occurring oncolytic viruses. In
The efficacy of oncolytic viruses recent one (2015) for treating
addition, scientists are able to
as a potential treatment for melanoma.
modify the genetic material of
Spring 2018 Infoline: 0800 980 3332 21HOT TOPICS
MYELOMA THROUGH THE AGES
by alice baron
Myeloma has been a documented cancer since the 1800s, however, a recent
archaeological discovery has revealed the earliest known case of myeloma dates to
thousands of years ago. Other historical touchpoints of myeloma are summarised below.
The oldest known case of
myeloma has been discovered
in an ancient Egyptian mummy.
The man died nearly 4,000 Editor’s note:
years ago. The diagnosis was Today, cancer represents one
given after a CT scan revealed of the world’s most prevalent
lytic lesions in the bones. diseases yet it has been
almost entirely absent from
Myeloma has been found in
the remains of ancient Native the archaeological record. The
Americans, Bronze Age Egyptian man with myeloma,
Europeans and medieval Britons. buried around 1800bc,
provides another piece of
evidence that cancer is in fact
not a modern phenomenon.
Myeloma comes from the Cancer was undoubtedly not
Treatment has come a long way
ancient Greek words myelo
from the 1800s: rhubarb pills, as prevalent as it is today,
meaning marrow and oma
orange peel, opiates, leeches, nor is there much doubt that
meaning tumour.
blood letting, quinine, steel, the main factor accounting
camphor. for the increased prevalence
of cancer is a longer life
expectancy and possibly
modern lifestyle (e.g. smoking
or obesity). Nevertheless,
The use of urethane – a synthetic compound for our understanding of
used in making pesticides and fungicides – was myeloma – the causes of
discontinued after a study found that it was no which remain elusive – it is
better at treating myeloma than a placebo of hoped that gaining a better
cherry and cola-flavoured syrup. understanding of the disease’s
history will contribute to
The first well-documented case of
ongoing investigations trying
myeloma was of Sarah Newbury in
1844 by the doctor Samuel Solly. The to unpick the underlying
most famous study was in 1845, by mechanisms leading to the
Henry Bence Jones which led to the onset of myeloma.
discovery of Bence Jones protein.
The chemotherapy drug
Myeloma is also known melphalan was first used to
as Kahler’s disease after treat myeloma patients in 1958.
the Austrian doctor Otto
Kahler who described the
cancer in 1889.
High-dose therapy and stem
cell transplantation were first
introduced as treatment for
myeloma in 1983, transforming
the treatment landscape.
Today, myeloma is found in many
different animals, such as dogs, cats
and horses, and these are often treated
with the chemotherapy drug melphalan
and the steroid prednisolone.
22 www.myeloma.org.uk Spring 2018HOT TOPICS
ALOPECIA AND ITS IMPACT ON MEN
by debbie gardiner
Chemotherapy-induced hair how they feel hair loss leads to Seek support
loss (alopecia) as a result of them being labelled ‘a cancer
Even when one believes they
treatment for cancer is well sufferer’ – often an unwelcome
have mentally prepared for
recognised as a significant badge.
hair loss, the reality can be
and potentially distressing emotional and challenging – for
The impact on men
side effect. both genders. Please do discuss
In the past there was a how you are feeling and seek
Alopecia in myeloma perception (in society support from your clinical nurse
and within the healthcare specialist, counsellor or friends
Myeloma patients may
profession) that women in and family.
experience hair thinning
particular found hair loss as a
on a number of drugs used The organisation ‘Look Good,
result of anti-cancer treatment
to treat myeloma (such as Feel Better’ can also be a
more disturbing and difficult
the chemotherapy drugs valuable source of support and
to cope with than men.
cyclophosphamide or they currently have a section
This view was rooted in the
bendamustine), and will always for men in development:
misconception that, because
experience hair loss following www.lookgoodfeelbetter.co.uk/
hair loss can be a natural
high-dose therapy and stem support-advice/men
process in a man’s life, alopecia
cell transplantation (HDT-
as a side effect of treatment
SCT), as well as with some
was less of an issue for men.
other chemotherapy treatment
combinations such as DT-PACE. However there has been a
growing recognition that the
The experience of losing one’s
feelings described above are not
hair has been described by
exclusive to females – hair loss
many patients as a traumatic
experience. Despite being
can also affect a man’s sense
of self and self-confidence, DID YOU
KNOW?
forewarned by your doctor or
and can equally increase their
clinical nurse specialist - and
visibility as a cancer patient
even when you believe you
to their work colleagues and
have mentally prepared - the The hair follicles on the scalp
acquaintances. Furthermore
reality of hair loss can still be are particularly susceptible
some of the coping mechanisms
a shock, and leave you feeling to chemotherapy because
– such as buying a wig or talking
vulnerable. approximately 85% to 90%
openly to friends, family and
This is because hair loss healthcare professionals about of hair is in the active growth
can and often does affect your feelings - may not come phase.
one’s self-image (the way in so easily to men as they do to The toxic effects of
which we describe ourselves, women. chemotherapy on the hair
usually including our physical are almost always reversible
Men have also identified as
characteristics), and our self- – hair will start to regrow
being more affected than
esteem (the extent to which we approximately three months
women by the loss of hair from
like and accept or approve of after you cease treatment.
the wider body surfaces such
ourselves). The texture and colour of
as chest hair, axillary (armpit)
You might lose confidence, and pubic hair. For some men your hair may change when
leading to a change in your the loss of body hair (as a sign it regrows.
behaviour (for example not of their masculinity) represents When the hair starts to
socialising as much as you another loss and necessitates regrow use a gentle shampoo.
used to) and some describe another self-image adjustment.
Spring 2018 Infoline: 0800 980 3332 23MY MYELOMA STORY
myeloma story
Sharon Thomas is 45 years old, he would not be in. I spoke up
lives on Hayling Island near at the appointment and said
Portsmouth and is married to Joe normally just gets on with
Joe, who was diagnosed with it but he is nearly in tears with
myeloma in 2014 at the age of the pain and there is something
very wrong. Some blood was
39. Sharon works as a waste
taken and we went home. That
contracts negotiator.
night, Joe had a massive panic
How was it for you when your attack as the pain was so intense.
husband was diagnosed with I called an ambulance who got
myeloma? How did you react, his breathing regulated and we
and was it a different reaction to said we just don’t know what it
your husband? is. An urgent appointment at the
Before his diagnosis, Joe was a medical assessment unit followed,
heavy goods vehicle (HGV) driver where he had tests and X-rays
and stayed out a week at a time and they said that it looks like a
in the lorry. He started getting blood infection. Later that week
a lot of pain around his ribs, Joe was diagnosed with myeloma
shoulders and back. We went to – he had 37 fractures all over
doctors and we were told it was a his body. His collar bone is so
water infection or pleurisy and he badly damaged that it is hollow.
would be given medication. Then He could hardly walk and was in
one day Joe came home after constant pain. Then treatment
a week away and could hardly started. I have to say that since
walk. I got an appointment at that point on, the NHS has been
the doctors on the Monday simply amazing as far as we’re
and called his work and said concerned.
24 www.myeloma.org.uk Spring 2018MY MYELOMA STORY
When my husband was told
the news he took it all in and
asked lots of questions like “is
it terminal?”, “can I be cured?”
He seemed so strong asking
these questions. I, however, was
in total shock. I didn’t speak,
just held back the tears and
wanted to be strong for him.
But then I went into overdrive
as I thought, if I’m positive he
will be positive, so I found out
all the information, including
whether there were groups he
could attend. I also read other
people’s experiences - some
scared me to be honest.
What adjustments have you had
to make to your life since his
diagnosis? Do you see yourself
as a ‘carer’?
Joe and I have always been
close. At the beginning it was
exceptionally difficult as he
could hardly walk and could not
do much for himself because of
all the treatment. I was holding
down a full time job along with
taking him to hospital visits,
helping him get ready in the
morning and giving him his
medication. We went from two
wages to one so it was very hard.
Our daughter doesn’t live with us
and she was travelling at the time
of the diagnosis. We didn’t want
to mention anything until she
was settled and we knew what
was going on. To be honest we
didn’t really tell anyone anything
at the beginning as we really
needed to get our heads round
it ourselves. At the time Joe’s
mother was living with us and
Spring 2018 Infoline: 0800 980 3332 25MY MYELOMA STORY
she found it extremely hard to views were the same. The best driving which is much better
deal with. A few months later we way to deal with everything, for him.
found her a little flat nearby and for us, has been to adopt a Who or what do you turn to
she moved in as our house had positive approach. Four months when it gets hard? (e.g. hobbies,
to be kept extremely clean to down the line we wrote a really talking to friends, exercise,
keep infection risk to a minimum, honest post on Facebook to learning more about myeloma?)
and we needed peace and quiet. all our followers and we would
Everything was different. give updates - we found that Our close friends have been
really helped as we would get amazing but some people have
I started ignoring my own surprised us - I think they were
needs and became unhealthy lovely supportive messages in
response. scared and were very distant so
so I organised at least once a unfortunately some friendships
week to do a boot camp where At times my husband has felt were lost. I think many people
I could take out any frustration terrible about the pressure I have have found this. In the beginning
– this was a godsend. I feel I been put under, but I always I found it very hard to ask for
was definitely a carer in the tell him he would have done help because I felt the need
earlier days when Joe needed everything the same it if it had to be strong and get my head
so much support - mentally and been me. I would never have not round everything, but I have
physically - but I would not have been there for him. We have got better at talking to friends
changed helping him in any way. supported each other and it’s so now. Sometimes, though, I do
I was in a bubble and my sole important to be honest and talk just want to be in my bubble
purpose in life was to care for about everything. and if I see my friends I want to
my husband and do well at my What has been the hardest thing talk about everything apart from
full time job. After his allogeneic for you to deal with since his myeloma.
(donor) stem cell transplant and diagnosis?
months of recovery his body I have focused on raising money
started repairing itself - he could The hardest thing is the change in for Myeloma UK with coffee
do more for himself and the him as he is not as physically fit at mornings and taking part in
difference was amazing. he was. running events and triathlons
We don’t have holidays like we which is fantastic and my
We eventually told close family husband is very supportive.
members and friends but only a used to (we would go abroad and
small group of people knew at the travel) because of his extremely Has anything positive come out
beginning. We didn’t really get low immune system. We now go of Joe’s diagnosis?
much support as people always away in our caravan and we don’t Buying the caravan so we
know us as strong and it’s very tend to mix with large amounts of can go on holiday and please
unlike us to ask for help. We’ve people. We also don’t go to the ourselves is the best thing we
learned that not asking for help is theatre or shows anymore - that have ever done. The electric
not healthy. will come again hopefully, but Joe bike means we can still enjoy
staying well is more important at bike rides together, and we enjoy
How honest are you with your the moment.
husband about how you are socialising with our friends. We
feeling? Do you find it comes We used to go for bike rides and try not to take life too seriously,
naturally to you to know what to to enable us to still do this he have fun and laugh a lot more.
say at difficult times? now has an electric bike. He can’t All in all, the last three and half
do long dog walks anymore so years have been challenging and
We have always had an that’s down to me but we go to
extremely honest relationship there are maybe new challenges
places where there are lots of ahead. At present the myeloma
but, at the beginning, I didn’t seats on the way round so he can
want him to know how I was is at bay. We know it could
have rests. come back but we don’t like to
feeling. He was so ill and we
didn’t know what would happen Joe had in total two and half be negative - we lead our lives
next. But when we both got years off work due to treatment positively and to the full and feel
our heads round everything, and he was not able to return to there is little we can’t achieve.
we have been very honest with his HGV driver job. However, he
each other. I would explain my now drives a smaller lorry and
fears and we found that our doesn’t do such long periods of
26 www.myeloma.org.uk Spring 2018You can also read
