MyeNews Autumn 2019 Issue no 49 - Myeloma Australia
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MyeNews
President’s Report
Autumn 2019 Issue no 49
Contents
President’s Report
In this issue
From the President 3 What’s Happening – New South Wales 18
Profiles – Juliet Hill and Rachel McCann 4 What’s Happening – Queensland 19
Profile – Deborah Thompson 5 What’s Happening – South Australia 20
American Society of Hematology 6 What’s Happening – Victoria 21
Multiple Myeloma and What’s Happening – Western Australia 22
Psychological Wellbeing 7
Medical Corner 23
A decade of movie fundraisers 9
Calendar of Events 25
News From the Myeloma and
Related Diseases Registry 10
Travel Insurance – My Story 11
Charity TV – John’s Story 14
From the Nurse Manager 15
What’s Happening – Fundraising
and Community Engagement 16
What’s Happening – Fundraising
and Community Engagement NSW 17
MyeNews – Contact Information and Submissions
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an unrestricted educational
grant from Celgene MyeNews is published quarterly by the Myeloma Foundation of Austalia Inc. The information presented in MyeNews 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 form without the prior written permission from The Myeloma Foundation of Australia Inc.
Myeloma Foundation of Australia Inc. ARBN 126 035 247 ABN 30 476 390 368
2 MyeNews | www.myeloma.org.au
From the President
Now that the festive season is over we are unlimited. Currently MA only
looking forward to what 2019 brings. reaches a small percentage
of the myeloma community
and this has always been a
The most exciting thing, at the moment, is that the
problem for us, and we have
Pharmaceutical Benefits Advisory Committee will be meeting
been looking at ways so that
soon to discuss the making the use of Daratumumab
we can we reach more. We
combined with Velcade a subsidised treatment of myeloma
understand the problems
as well as easing the limitations on the use of Revlimid.
of distance and wellbeing
Hopefully many of you have had the opportunity to log
prevent many attending
into the PBAC’s web site to make a submission supporting
support groups and seminars
these changes as we have been told the Committee read all
so we are hoping to come to
submissions and they do count. All the evidence from the
you wherever you are. This
many trials shows these changes improve the treatment
will be coming soon.
options available.
For now, check our calendar in this magazine as the nurses
Thanks to everyone who has supported our donation drive
have been starting new groups all around the country as well
at the end of last year and if you have any great ideas for
as the regular seminars. If you wish to start an Information
fundraising please contact Matt in Melbourne or Santosh in
and Support Group in your area, please contact the Myeloma
Sydney as they will try and help you develop your ideas to
Support Nurses and they will give you all the help they can.
raise valuable funding.
Also, initially through a link with Rotary in Victoria, they may
We are now a fully National organisation with Myeloma be able to help arrange meeting rooms in your area.
Support Nurses in all States of Australia with coverage of
In December our CEO Steve and two of our nurses Nella and
the two Territories. We understand that the nurses are in
Jo, attended the American Society of Haematology’s annual
the major centres with limited cover beyond this, so we are
meeting in San Diego. Here we met the leaders of other
looking at ways to increase our coverage. We are currently
support organisations from around the world and were able
installing the equipment to enable us to reach out to
to share ideas and resources. We also attended many other
everyone via the internet to where ever you are in Australia.
meetings and heard the latest in the myeloma treatment
We are hopeful that in the near future many of our seminars
options. It was great to see the contributions in the published
will be webcast so you can watch from your computer or
research by our Australian doctors and scientists which
tablet in your home. Our plans are to have Information and
reinforced the facts that our specialists are at the cutting
Support Groups in the rural areas of Australia. These will
edge in myeloma treatment.
be led by a nurse on a computer from our office with the
program we have chosen, to allow interaction between
the nurse and the members of the group. The options are
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Support Line 1800 693 566 | MyeNews 3
Profile
Juliet Hill Rachel McCann
Newcastle Support Nurse Newcastle Support Nurse
Hello, my name is Juliet Hill and I am one of the new Hi, my name is Rachel McCann and I have just started
Myeloma Support Nurses to be starting in Newcastle and the working as a Myeloma Support Nurse with Myeloma
surrounding areas. I have been a haematology nurse at the Australia. I am based in Newcastle, NSW and working
Calvary Mater Newcastle since 2001 working in most areas alongside Juliet. I began working in oncology nursing in
of the Haematology unit including inpatient and outpatient 2013 at Epworth Healthcare in Melbourne; this is where
wards, apheresis and the clinical trials unit. Like most I quickly developed my passion for this type of nursing
haematology nurses, the patients we get to meet and care for and the constant learning it brings. At Epworth I had the
everyday is what I love most about working in these areas. I privilege of looking after a variety of amazing patients
am excited to be given the opportunity to work for Myeloma with different types of cancer. I became really interested
Australia and continue to meet and support myeloma with the ever-changing treatments related to cancer and
patients in the community setting. working alongside so many inspiring patients. This is where
I had the opportunity to do my chemotherapy training and
Away from my nursing role I get to share a crazy, hectic
worked between the medical oncology ward and the day
lifestyle with my husband Andrew and our three children
chemotherapy unit.
Darcy, Leila and Flynn. We are currently transitioning to
having a high schooler in the house and the realisation of I then moved back to my home town of Warrnambool
how quickly time really does fly by. Living on six acres in a and worked in the day chemotherapy unit which was a
small country town a normal day for us involves ponies, flying nice change working with a much smaller community.
cricket balls and a six year old on a quad bike constantly I then moved to London and worked with the district
being told to “slow down”! nursing service in the UK where I was able to look after and
understand patients in their own homes. Getting to know my
I am really looking forward to settling in to the new role
patient’s in their homes was such a pleasure and a different
of Myeloma Support Nurse in Newcastle, to continue
realm of care compared to in hospital. In London I met
increasing my knowledge of myeloma and getting out in the
my now fiancé who is originally from Newcastle, so when
community meeting people living with myeloma. Please do
moving back to Australia we decided Newcastle would be a
Photos supplied and used with permission
not hesitate to get in touch with either my colleague Rachel
nice warm, beachy place to settle with lots of opportunities.
or myself to say “Hi” and let us know what our patients need
I am now working at Lake Macquarie Private in the medical
in Newcastle.
oncology ward as well as with Myeloma Australia. I am so
excited to have the opportunity to work in this Support
Nurse role; to have this opportunity to provide support
and education to people with myeloma is such a privilege.
Outside of work I am now looking forward to my wedding
in February 2020 and to continue to explore the beautiful
Newcastle area.
4 MyeNews | www.myeloma.org.au
Profile
attend conferences or workshops in other parts of Australia,
I am reassured that here in Tasmania we are providing first
rate care and are at the forefront of treatments and new
developments in the management of haematology cancers. It
is a privilege to be able to support patients along their cancer
journey and I am constantly astounded by their strength,
endurance and sincere gratitude for what we do for them.
My employment history reads a bit like a box of Liquorice
Allsorts, having practised in many disciplines of nursing
from when I qualified in England (a long time ago). I was first
involved in cancer care when I moved to Australia in 1989
working with the Victorian Royal District Nursing Service,
delivering chemotherapy to patients in their homes and
caring for palliative clients. Since living in Tasmania my work
roles have included rural and emergency nursing, as a nurse
with the Australian Red Cross Blood Service and as a nurse
teacher at TasTAFE. I started in haemo-oncology outpatients
at the Royal in 2009 and have been in my current position
as a cancer care coordinator since 2015. Other career paths
have led to a period as part-time manager of a camp in
East Gippsland where I was also a koala carer. I have three
Deborah Thompson fantastic boys, all who are now finding their own places in
the world, two are working in Australia and the third is in
TAS Support Nurse
Photo supplied and used with permission
England on an (extended) gap year. I enjoy playing squash,
cycling, walking and generally trying to keep fit. Otherwise I
Hi, my name is Deborah Thompson and I joined Myeloma may be found in any of the abundant coffee shops in Hobart,
Australia in January this year. I am very excited about being catching up with friends.
part of the team and providing information and support
to those living with myeloma. Three days a week I am The first Hobart Myeloma Information & Support Group is
employed as the haematology cancer care coordinator at planned for March and I am also looking forward to meeting
the Royal Hobart Hospital and have the privilege of working health professionals in the north and north-west of Tasmania
with an amazing team of doctors and nurses. Whenever I and helping to set up groups in those areas too.
eBay - Online Shop
Cards, Artwork, Sports Memorabilia
and much more
Our online shop has a range of items that include
greeting cards from renowned artist Patricia Ball and
photographer Joe Rey, artwork by Patricia Ball that
comes framed and ready to hang, first aid kits, sports
memorabilia and promotional t-shirts from our iconic
Masters of Rock event. Below is an example of our
extensive range of items which can all be found at
http://myeloma.org.au/volunteer-with-us/shop/
Support Line 1800 693 566 | MyeNews 5
ASH
The American Society of Hematology (ASH) held their
annual conference in San Diego from the 30 November to
4 December 2018. As guests of the International Myeloma
Foundation, Myeloma Australia staff CEO Steve Roach, Senior
Myeloma Nurse Jo Gardiner, President Brian Rosengarten and
myself had the opportunity to attend the conference.
The ASH medical and scientific program was overflowing
with myeloma talks, posters and programs and it was
impossible to get to every session. There were many oral
abstracts and posters on new immune therapies, updates
on novel therapies, and interesting new findings about the
biology of myeloma which present the possibility for future Christian Bryant.
targets and treatments. To find out more please read over the
medical corner in this edition of MyeNews. presented a case study and discussed clinical data that could
In the poster hall there were close to a thousand abstracts guide the treatment relating to it. This was an interactive
in the myeloma section and it was great to see so many session with voting and discussion about treatment options
posters from Australian and New Zealand researchers, MSAG and choices and a great way to learn more about myeloma
members and groups such as Australasian Myeloma Research and its treatment.
Consortium (AMaRC) and the Australasian Leukaemia and The International Myeloma Working Group (IMWG) breakfast
Lymphoma Group (ALLG). meeting was held on the Friday morning before the official
At the ASH exhibition hall, we brought home educational opening of the conference where we heard abstracts
resources for our Myeloma Support Nurses and got lots handpicked from the ASH program as well as current and
of ideas for Myeloma Australia projects back home. There future IMWG member projects including the role of whole
were so many things to see and learn in the exhibition body low dose CT, the role of surgery in myeloma bone
hall including a virtual reality experience of the bone disease of the spine and the natural history of smouldering
microenvironment in myeloma and how new immune myeloma to name a few.
therapies engage with myeloma cells. On the Saturday evening, we attended the IMF’s Brian D. Novis
Aside from the conference itself, we attended several other Research Grant reception where we listened to people share
meetings and events. We met with other myeloma support their story living with myeloma. Each story was different and
and advocacy organisations at the Global Myeloma Action moving, we celebrated together with their support network
Network (GMAN) meeting where there were representatives their achievements and their hope for the future. Several
from twenty countries across North America, South America, grants were awarded to researchers in the myeloma field
Australasia, Europe and the Middle East. Serdar Erdoğan, the from IMF fundraising events during the year. There were two
new director of GMAN and IMF Europe and Middle East gave grants awarded to Australian researchers this year. A senior
a great presentation about patient support and advocacy research grant was given to MSAG member Prof Andrew
initiatives in Turkey. It was a great opportunity to share ideas Zannettino from The Myeloma Research Laboratory, Health
and learn from others and see what works in other countries. and Medical Sciences at The University of Adelaide for his work
Carer support and programs was also a topic of conversation. entitled ‘Single cell sequencing to discover tumor-associated
Not all organisations have specific carer programs and it changes in the bone microenvironment of myeloma patients:
was great to hear from the people in Brazil about their carer identification of prognostic markers and novel therapeutic
programs which they run at various times through the year. targets’ and Dr Christian Bryant from The Institute of
They are solely for small groups of carers and run for six Haematology – Multiple Myeloma Research Laboratory at
sessions over a few months. In this meeting we also planned Royal Prince Alfred Hospital, Sydney received a junior research
our projects and collaborations for the next twelve months grant for his work entitled ‘Dissecting the structural and
with all members of the GMAN group. functional heterogeneity of terminal effector CD8+T cells from
MGUS and newly diagnosed MM patients in order to identify
This years’ IMF Satellite Symposium theme was ‘New therapeutic targets and unlock their anti-myeloma potential’.
Strategies for Multiple Myeloma Care: Next Steps for the
Future’. The audience comprised thousands of doctors Each of us who attended found the events to be very
and health professionals listening to myeloma experts motivating and inspiring and extremely beneficial. We gained
Brian Durie (USA), Phillipe Moreau (France), Jesus San- a lot from the educational opportunities and meeting with
Miguel (Spain), Shaji Kumar (USA) and S Vincent Rajkumar other myeloma organisations from around the world. Thank
(USA) discuss topics such as risk stratification of plasma you to the IMF for hosting us and we look forward to sharing
Photo © Nella Combe
cell disorders, treating newly diagnosed patients, the role more of our learnings at upcoming Information and Support
of transplantation, consolidation and maintenance after Groups and seminars across the country.
induction and therapeutic strategies for patients with Nella Combe
relapsed/refractory myeloma. Each member of the faculty Manager Nursing and Patient Services
6 MyeNews | www.myeloma.org.au
Wellbeing
Multiple Myeloma and
Psychological Wellbeing
The importance of paying attention to the
emotional needs of myeloma patients has
become recognised as a key component of
best-practice care. The people who largely
attend to the emotional and psychological
needs of patients are clinical psychologists,
who work alongside your doctors and nurses
as part of the wider multidisciplinary team.
Whilst it is very common for us to be involved with those question is when. I think that’s what’s different maybe about this
affected by myeloma, people often don’t appreciate what myeloma maybe than other cancers… certain cancers can be
our role is. This short article aims to help describe the role cured and myeloma can’t. So I think that’s a problem.”
of clinical psychologists, some of the work we do, and the – myeloma patient.
potential benefits to those impacted by myeloma.
Many people we see have never seen a psychologist before
What do clinical psychologists do? – they’ve never needed to. But receiving a diagnosis of
Clinical psychologists use psychological skills to help myeloma can be devastating and living with the illness
you manage psychosocial difficulties, including anxiety, comes with various challenges which may be helped
depression, adjustment to illness, and distress that comes with the appropriate support. It is entirely normal to
up when navigating the treatment process. Therapy may experience distress after finding out that you have myeloma
involve providing education to help you better understand but, for some people, this distress can be persistent
the problems that you are facing, exploring strategies to and overwhelming, and may develop into symptoms of
manage and cope with psychological distress, and helping depression, anxiety, and hopelessness. These feelings can
you process the big emotions that often arise in the context impact on people’s ability to do things that are meaningful
of myeloma diagnosis. or important to them. Therefore, it can be helpful to see a
clinical psychologist if you notice that you are experiencing
Clinical psychologists do not prescribe medications; however, elevated levels of distress. Some common signs of distress
if it appears that you might benefit from medication, they include the following:
can facilitate referrals to the appropriate health professionals
(e.g., a psychiatrist). • Feeling consistently low or flat
• Withdrawing from, or not enjoying, previously enjoyed
In the context of a diagnosis of myeloma, a clinical activities
psychologist’s role often involves helping patients cope with: • Isolating yourself from others
• Adjustment to illness and undergoing associated treatment • Feeling constantly worried and stressed
• Low mood and/or anxiety (particularly living with • Agitation or becoming easily frustrated with others
uncertainty) • Panic attack symptoms (e.g. racing heart, light headedness,
• Grief and loss associated with the significant changes nausea, breathing difficulties, sweating, and fear of losing
that happen in one’s life after diagnosis (e.g. loss of control, going crazy, or dying).
independence, loss of roles/identity, loss of imagined
future)
• Specific fears (e.g., of needles) that might be barriers to
receiving medical treatment
• Changes in body image and sexuality
• Communication with others about cancer (e.g., talking to
children about cancer)
Photo supplied and used with permission
• Existential distress
• End of life support
Why might I benefit from seeing one?
“The problem is that myeloma returns and that it is not curable.
So that is in the back of my mind always. . . It is always in the
back of my mind that I know this thing is coming back and the
Support Line 1800 693 566 | MyeNews 7
People with a diagnosis of myeloma may benefit from services (e.g., when you are an inpatient in hospital) and, in
psychological sessions that focus on strategies to help other situations, you may need to pay a fee to see a private
manage long term changes associated with a chronic psychologist.
illness. It is a two-way relationship between you and your
psychologist; the goal is to come to terms with the diagnosis, Other resources that may be of help include:
help guide you through associated emotional storms, learn • Cancer Council NSW Helpline: 13 11 20. Available:
to adapt to and manage symptoms e.g. fatigue and pain, 9am-5pm Mon-Fri. Provides help and support as well
cope with living with uncertainty, and to ultimately live a as recommend a range of other support services and
meaningful life despite the illness. programs that may also be of assistance.
Similarly, carers and loved ones can also experience • Mental Health Line: 1800 011 511. Available 24hrs.
increased levels of stress and have their own mental health Anyone with a mental health issue can use the Mental
challenges, often ‘suffering in silence’. If your loved one is Health Line to speak with a mental health professional
experiencing difficulty coping, please consider seeking and be directed to the right care for them.
psychological support. • Cancer Council Booklet: Emotions and cancer. Can be
found at https://www.cancer.org.au/about-cancer/
How do I get access to publications.html
a clinical psychologist?
We hope this brief introduction about the role of psychology
The pathway to accessing a clinical psychologist differs in helping patients with myeloma has been helpful.
depending on where you live. The easiest approach is to
contact your treating team at the hospital to ask for a referral, John Chalmers, Pallavi Pillay, and Jade Chan
or your GP to access psychologists within the community. In Psycho-Oncology Team
some situations, you may be able to access free psychological The Royal Prince Alfred Hospital, Sydney NSW
The Carer
I’m screaming for space To find reason
Are you up? A slower pace In this season of confusion
Are you down? Grace That has become
Are you mobile? I’m struggling with So precious. So precious.
Are you around? Energy Today. We have today.
Do I have space to be? Balance Live that way.
Or do I need to see Conflict in needs
Give way.
What needs to done Planting seeds
Play.
In this moment I’m free. Of hope, instead of fear.
Stay
I’m here.
I’m exhausted In the moment.
I want to be here
In body It’s my only way
I’m clear.
I’m confused To make sense of
My love for you
In mind Each precious, precious Day.
Will keep me always here and near.
But I keep looking to find
I hope I can do this.
The strength So. Today. Our lives are different.
I’m trying to do this.
To be, to see, to plan... I need to find the good.
Please be patient while I try.
I’ve now understood
To simply, breathe. I can’t lie.
That life is precious
This is hard.
Oh you wicked life It’s raw
I’m relaxing my guard
You’ve dealt your card It hurts
To be human.
You’ve cut right through It’s beauty is flawed
We’re both human
Our burgeoning hearts. But it has a new law.
Struggling.
You’re cruel, you’re mean Live. Love. Today.
I have no more delusion.
We didn’t see We may not get more.
The space we had, I love you with every claw In this new life
When we could just be. Of my fingers Full of strife
Trying to close the door We have today.
Now its:
Against the tide and the roar Only today.
Medical kit
Of my pain. I’m trying to live that way.
Appointments galore
It’s insane.
Restrictions I love you.
Contradictions I love you
By Carin Lavery
Redactions I want the best for you.
And action. My heart bleeds
Always, action. With seeds of desperation
8 MyeNews | www.myeloma.org.au
CCMSG Fundraising
A decade of movie fundraisers
Central Coast Myeloma Support Group (CCMSG) was founded
in 2007 following multiple requests from patients and carers
locally. The evening meetings are held bi-monthly at the local
leagues club in Gosford. The objectives of the group are based
on the principles of information giving, sharing knowledge
and providing support in a very informal format. The group
is facilitated by a senior haematology nurse (usually me!) and
have guest speakers at many of the sessions.
An early key focus of CCMSG was to get involved with raising
the profile of myeloma on the Central Coast and also raising
funds that would assist those supporting people living with
myeloma. After a brainstorming session at one of the support
groups we looked into a collaboration with the Avoca Beach
Picture Theatre to run fundraising movie nights. The rest as
they say is history! We started our first ‘Myeloma Movie Night’ Movie night 2012.
in 2009 with support from the lovely Shaun & Linda Raby
(from the then MFA). The night was a resounding success with The movie nights however, do so much more than raise
many support group members and people from the myeloma funds. They help to raise morale, help to foster a community
community pitching in to provide plates of nibbles, sell raffle spirit and are just a great, happy evening – for staff as well
tickets, sell movie tickets or do a bit of advertising. The night as patients and carers. It is now ‘that time of year again’ as
has gone from strength to strength and is usually almost we make the most of daylight savings with our movie night
sold out (250 people) each year. Funds raised are divvied up booked for March 21st with a hilarious looking film Swimming
with $1,000 going to Myeloma Australia and the Leukaemia with Men! Key committee members and volunteers help us
Foundation each year for their support with information to ‘source’ raffle prizes, sell tickets and plan the food. It will
resources, tea/coffee at the support groups, transport and no doubt be another uplifting evening, we will give a nod to
funding of the annual Myeloma patient/carer seminar. those that have lost their fight to the disease then move on to
Remaining funds raised over the last two years have just the business of ‘Living with Myeloma’
gone to the hospital where we intend to buy electronic The Central Coast Myeloma Support Group would like to take
tablets that can be loaded with tailored supportive care this opportunity to thank all those that have supported the
information (for all cancer patients) and also collect patient group over the years with their, time, energy or expertise.
reported outcome (PRO) data. Collecting PRO data will assist
Cancer Services at CCLHD to identify how we can improve to Jacqui Jagger
facilitate truly patient centric care. Haematology Nurse Practitioner / Group facilitator
Photos supplied and used with permission
Avoca Beach picture theatre.
Support Line 1800 693 566 | MyeNews 9
NEWS FROM THE MYELOMA AND
RELATED DISEASES REGISTRY
RECRUITMENT UPDATE
We now have close to 2600 patients RESEARCH
entered in the Myeloma and Related
Diseases Registry, which is a 39% increase My-PROMPT
on December 2017. Congratulations My-PROMPT is a multicentre pilot randomised trial to test the feasibility of real-time
to Christchurch Hospital for adding the reporting of patient-reported outcomes to clinicians treating patients with multiple
2500th patient! We have also reached 50 myeloma (MM). We completed recruitment in October 2018 with 32 patients, and
participating hospitals and clinics, with 37 follow-up will be complete in May 2019. We thank all patients and sites for their
approved sites and 13 more with approval participation in this trial.
pending. This is a huge achievement and
could not have happened without the
IMPROVE
support of all participating patients and
IMPROVE is a sub-study of the MRDR. Funded by the
hospitals. The most recent site to join the
National Blood Authority, this study aims to investigate
MRDR is Royal North Shore Hospital.
infections and immunoglobulin (Ig) use in patients with MM
in Australia, and provide information to improve national Ig
DATA REQUESTS AND stewardship and patient outcomes.
ANALYSES
By the end of 2018, the MRDR had
Myeloma 1000 Project
received a total of 12 requests for data The Myeloma 1000 biobank project reached almost 300
and analyses. Eight of these were from participants recruited in 2018, with close to 100 patients enrolled in the last 12
investigators and four from industry. This months. There are now 11 approved sites and a further 5 with approval pending. We
is a great indication of the relevance look forward to 2019 being another year of record recruitment towards our goal of
of registry data and the importance of having samples from 1000 MM and 1000 MGUS patients in the biobank.
patients’ contribution to the MRDR.
INTERNATIONAL ACTIVITIES
Myeloma UK, a patient advocacy group, are
exploring establishment of a UK Myeloma
registry. They contacted the MRDR team
the MRDR to the MCRN, and a number are eligible to participate. If so, you will receive
to discuss our experience with the MRDR.
of interesting opportunities for further a patient information sheet about the registry
Of the groups interviewed internationally,
collaborations were identified. including how to opt out if you change your
they found the MRDR to be one of the
mind.
best examples of a model registry for A link with the Danish Myeloma Registry
myeloma and haematological diseases, has been established following a meeting TO CONTACT THE MRDR:
and have invited us to participate in a at University of Sydney in July 2018, with
Phone: 1800 811 326
follow-up stakeholder workshop. A great presentations on both registries, providing
Email: sphpm-myeloma@monash.edu
endorsement of the registry! the opportunity for future collaboration.
Website: mrdr.net.au
Dr Donna Reece, Director of the Myeloma
Canada Research Network (MCRN) MRDR: HOW CAN YOUR
met with MRDR leads Prof Andrew HOSPITAL BE INVOLVED?
Spencer and Prof Erica Wood in 2018.
Ask your treating specialist if your hospital
Subsequently, at ASH in San Diego, Erica
contributes data to the MRDR and if you
and A/Prof Zoe McQuilten presented
CRICOS Provider: Monash University 00008C. FEB 2019
10 MyeNews | www.myeloma.org.auMy Story
count would be considered a ‘success’. To the best
of my knowledge ‘terminal condition’ means you
have been given a defined period (e.g. ‘x’ months)
to live. To see all the questions I would suggest
you do an online dummy quote with one of the
companies. If you separate MM and bulging disc
(back pain) for instance, you will get two sets of
questions. It is important that you answer the
questions truthfully. If you make a claim and the
company finds out that you have not made a full
and truthful disclosure the policy is void.
The total cost is the price shown on the first page
of the quote plus the extra EMC premium. Different
companies will give different premiums for the
same set of answers, which is why it is important
to get several quotes. If you cannot get a quote
online give a couple of companies a call, but
Trevor Hay expect to answer the same questions. A human,
however, will be able to give you guidance on the
Travel Insurance – My Story grey areas.
One area of ‘fine print’ that should be of interest to all those
I write this based on my experience (11 years ago) of being taking out travel insurance, but particularly carers, is that
a travel consultant and my own experience in purchasing EMCs for non-travelling close relatives need to be declared
travel insurance since being diagnosed. I have written this in and assessed as well. The rationale is that if someone close
good faith, but I cannot guarantee its accuracy and it should to you has a condition that might require you to amend or
NOT be taken to be expert advice. Always seek advice from a cancel your travel, then that is a foreseeable risk that needs
travel professional or the insurance company. extra cover. If in doubt talk to your insurer about this.
There is a saying in the travel business that if you can’t afford Even if you cannot get cover for MM it is still advisable to take
the insurance, you can’t afford the trip. This is especially out a general travel insurance policy as this will cover you
true of people with pre-existing medical conditions, such as for non-related medical events (e.g. if you are involved in a
multiple myeloma (even though cover will cost more). crash), loss of luggage and the other bits and pieces in the
policy. ALWAYS read the fine print and don’t be seduced by
Because insurance companies are businesses who wish
big numbers in the “What you are covered for” section. I don’t
to make a profit and Existing Medical Condition (EMCs)
take $20,000 worth of luggage with me when I travel!
constitute a higher risk they will ask for an extra premium to
cover that perceived higher risk or, if they deem your EMC to You should take out travel insurance when the amount that
be too high a risk, they won’t cover it at all. you have at risk (e.g. non-refundable deposits and airfares)
is greater than the cost of the policy. So if your deposits total
There are many companies offering travel insurance. Some
$1,000 and the policy costs $500 take out the insurance
of these claim to be cancer specialists, but in my experience
immediately - don’t wait until the week before you depart.
this is a bit of marketing hype and ‘regular’ companies are
just as likely to offer cover. The so-called ‘specialists’ might be Be wary of ‘free’ credit card policies. Some of them,
your last resort however. Always read the Product Disclosure particularly with the ‘high end’ cards are very comprehensive
Statement (PDS) and ask questions if you don’t understand and I was happy to use mine before I was diagnosed. As with
something. MM sufferers have reported success with the regular policies, however, you will need to check that
companies such as Covermore, Allianz, Australia Post, RACV, you can get coverage for MM. Mine refused to cover me for
All Clear and Good2Go, among others. Be aware that many MM so I have to take out another policy to ensure I am fully
of these companies are retail ‘brands’ and the actual policy protected. On the other hand, the policy that is offered by
issuer is named in the ‘fine print’ - e.g.: both Covermore and some other card companies is, in my opinion, useless (even
Austpost are covered by Zurich insurance company. for non-EMCs) and I would not rely on it at all.
It is very important to get at least three quotes. After Be aware also that different travel agency chains have
Photo supplied and used with permission
declaring your EMC you will have to answer an extra set ‘commercial arrangements’ with certain insurance companies
of questions or ring the company. These questions will be and that it is in the AGENCY’s best interest, not necessarily
almost exactly the same for every company, but the result yours, for you to deal with their preferred company. Caveat
will almost definitely be different in every case. Questions emptor (shop around).
include ‘what stage are you’, ‘have you had a stem cell
Trevor Hay
transplant’, ‘was it successful’, ‘is your condition terminal’?
(Western Australia)
I was advised by one company that a reduced paraprotein
Support Line 1800 693 566 | MyeNews 11President’s
My Myeloma Report
Story
walk again due to the loss of muscle tone and become
independent enough to move back to my own home, at first
just for overnight stays.
I am and will be, forever grateful to my beloved parents
Elaine and John for their wonderful care, love, strength and
unwavering support which was significant to my recovery. I
am sure I caused them more worry, stress and concern than I
ever did as a boy/teenager and that is saying something!!!
In March 2012 I was pronounced VGPR (very good partial
remission) with my free light chains down to 86 from the
original diagnosis 20 months previously of 7,300.
I would spend the next three and a half years with no
treatment at all, only going to hospital for my usual check-
ups and blood tests. It was during this time, being medically
retired at such a young age, that I thought about what I could
Stuart Gooddy
still do and not dwell on what I couldn’t, and so volunteering
It’s another August day in 2009 and I’m arriving at the filled this void by giving back to the community
depot to load my truck like I have done for the last 30 years I would eventually be driving two days a week for the
operating my fruit juice distribution business. I go to get my Leukeamia Foundation in their patient transport scheme and
trolley down from the truck where I experience the most one day a week for Angel Flight. Hearing the stories from
excruciating pain I have ever had in the middle of my back, other people and their journeys I gave thanks to the fact that
it would take another 12 months to find out that this was I was very lucky as there were so many people out there that
my T12 vertebrae “pancaking”. Over these 12 months my GP are far worse off than me.
sent me to so many “specialists” to have MRIs, CT scans, bone
density scans, numerous blood tests only to be told I have In July 2015 I went back onto chemo (Revlimid) with the view
osteoporosis which my GP didn’t believe especially at 49 of having a bone marrow transplant.
years of age, but didn’t know what I had, during this time I My FLC had reached 540 and needed to be brought down
was continuing with my blood and plasma donations at the to the lowest point possible. Six months later and the
blood bank. transplant was off the table as the number of new drugs
In March 2010 my father had a hip replacement and at one of available made it a better option in my case to continue
the post-operative meetings with the orthopaedic surgeon with just chemo. A transplant might be an option if needed
my mother picked his brains explaining my situation and if further down the track.
there was anyone he knew at St George Hospital that could In April 2016 a “tree change” decision was made to live
help me with my “osteoporosis” situation. On August 2nd out a long-life dream of living on acreage, with my eldest
2010 I saw an endocrinologist that specialized in metabolic daughter living in Maroochydore Qld, so the Sunshine Coast
bone disease, sending me to have a full body MRI and some was it. Getting out of Sydney in May 2017 and moving to
specific blood tests. At 5.30pm armed with this information the Sunshine Coast (Pomona) has been one of the better
(MRI) along with my weight loss (23kg) and losing 13cm off decisions I’ve made. The slower lifestyle, spending time in the
my height (I use to be as tall as my father) he was sure I had a garden (2.5 acres) have been great, growing vegetables and
blood cancer called multiple myeloma, I said “that’s the best fruit, waking every morning with so much beauty around, it
news I’ve had in the last 12 months because now I’ve got a has a very calming effect on me
diagnosis”. He informed me there was no cure but it could be
I consider myself truly blessed to live in a country where
managed and I was given the options of walking downstairs
cancer medication and treatment is available and where I
to the Accident & Emergency Department to start treatment
have been looked after exceptionally well by kind, caring
or I could leave here and maybe last another six months. I
specialists, hospital staff ( a HUGE thank you to all the staff at
took the treatment option.
Gympie Hospital and St George Hospital - you are the best)
During the three weeks in hospital I was finally diagnosed and brilliant haemotologists and fantastic local GPs who have
photo supplied and used with permission
with non-secretory multiple myeloma, (a rare form of MM also been very supportive both here and back in Sydney
which cannot be detected by blood tests). The MRI on the 2
I finished chemo (finished 11 cycles of Velcade, as the
August 2010 showed that all my vertebras from below my
Revlimid was no longer being effective) in August 2018 and
neck down to my tail bone had been compromised with
so far so good, the numbers are remaining relatively stable
fractures, compression, wedging or in the case of that T12
FLC 152 up from the 92 when I finished chemo.
‘pancaking’. I then returned to my parents place for the next
12 months of recuperation during the treatment process, Cancer is a frightening word as sometimes, as with me, I look
which included four different types of chemo and a stem very healthy and well on the outside, but it’s all happening
cell transplant. During this time, I literally had to learn to on the inside!!! The “old life” I had is now long gone but I have
12 MyeNews | www.myeloma.org.aubeen given the opportunity through this illness to create a place”; for me it’s music, the places it takes me with the lyrics
whole “new life” experiencing so many things that I would or the memories it creates.
never of had the chance to if it wasn’t for this disease. I am Learn as much as you can about this disease and treatments.
grateful for every day, trying to pack in as much as I can. I Join a support group it is very cathartic hearing other
have wonderful friends and family around me who have people’s journeys, problems and solutions to those issues
supported me through the thick, thin and dexamethasone that may arise, what is happening around the world and if
days – NOT easy. you need to ask questions, ask, Knowledge is Power.
This is my journey and the things I’ve learnt about myself is For all that you may be going through personally, and your
to keep your faith as there will always be hope. Stay positive support network around you, I wish you all the very best
and optimistic; negative thoughts have no place in my
PS: Dad I’m so glad you had that hip operation.
lifestyle.
Stuart Gooddy
Concentrate on what you can still do without dwelling on
what you can’t (those negative thoughts) Find your “happy
Running from Melbourne to Athens
Earlier in 2018, my wonderful Dad lost his brave battle with What a special memory I now have after completing the
multiple myeloma. Athens Marathon myself. Mum and I felt his presence the
In 1978, at age 22, Dad ran his first Melbourne Marathon. In whole way and know how much he would have absolutely
2017, Dad stood at the starting line to compete in his 40th loved it. The fact we raised money for this wonderful charity
consecutive Melbourne Marathon despite his deteriorating who put tireless work into supporting myeloma sufferers and
health. their friends and families affected is a privilege.
Dad always dreamed of running the Athens Marathon but Thanks
his commitment to fronting up every October in Melbourne Pana
meant he was never able to make the journey over. While
Dad wasn’t at the starting line in Athens, in November 2018
I stood in his place in Marathona in the hope of fulfilling a
dream he tragically never got to achieve.
Photos supplied and used with permission
13 MyeNews | www.myeloma.org.auCharity TV
“In the following article regarding the upcoming
Myeloma Australia/Charity TV project one of our
selected Ambassadors, John Cortazzo, explains his
journey with myeloma and his reasons for wanting
to be a part of this adventure. John has crafted these
words for the purpose of seeking donor support from
his various networks. The article speaks for itself.
We are still on the lookout for the last three
Ambassadors who will represent
Myeloma Australia when filming commences for
five days in February 2020. Would you like to be
considered as one of our Ambassadors or do you
know someone who might? Our Ambassadors,
at this stage include people living with myeloma, John Cortazzo Charity TV.
those whose lives have been impacted by myeloma
in various ways, Myeloma Australia staff and one Advancements in myeloma research have allowed some
gentleman who has no direct relationship to myeloma people to have lengthy breaks from treatment, but
whatsoever – he just wants ‘to do something that is unfortunately that isn’t my experience or the experience of
worthwhile.’ If you would like further details about this many others.
project do please reach out to me.” While there is an army of researchers, nurses, doctors and
Matt Maudlin advocates who work tirelessly in exploring research around
myeloma, not all myeloma patients have the same quality
or length of life, there is much to do. There are also patients
who unfortunately have limited access to the medical system
John’s Story because of financial or logistical reasons or who are fighting
this battle alone.
I was in my mid 50’s and living a pretty incredible life with
As a myeloma carrier, I understand that the future is not
my wife and kids, taking each day with positivity and
certain and there is still a long way ahead for all of us living
enthusiasm.
with myeloma. I want to advocate for equal access to new
It was early 2016 when I first experienced the symptoms of drugs as they become available because right now some
myeloma which kept me from enjoying everyday moments people can pay for high cost drugs, but many others cannot.
with my family. After a series of visits to the doctor, check-ups The more we tell people about our story, the quicker we can
and lab tests, my perfect world was painfully shaken to the find solutions.
core when I received the diagnosis. Myeloma (or multiple
I am fortunate to have been given a fantastic opportunity to
myeloma) is an incurable blood cancer. Once the first line of
represent our story using one of the most powerful means –
treatment fails, there is no clear treatment path beyond. The
national TV, by partnering with Charity TV Productions and
next line of treatment depends on response and duration to
Myeloma Australia!
the last treatment line to determine what can be tried next.
When we lose control of myeloma, it destroys bones, kidneys Charity TV will put together footage of me alongside others,
and your immune system, wrecking your quality of life and some of whom are also living with myeloma, undertaking
cutting it short. life-changing adventures. This project aims to inspire and
show that life’s journey is still enjoyable – and still can be!
I was in denial for a while, but I was driven not to let this
disease break me – or my family. The entire battle with The TV program combines adventures, travel, philanthropy
medications and its side effects drained me and did not and an opportunity to represent the Myeloma Community.
only challenge me physically, but also emotionally. With Besides taking part in one of the most exciting adventures of
the unbelievable support and encouragement of my loved my life, I have also committed to raising $100,000!
Photo supplied and used with permission
ones and the people around me, I focused on getting a new By putting my hand up to be part of this TV program, my
quality of life where I could once again thrive as a husband, intention is not to just help create more awareness about
father and businessman. the disease, but more importantly, to help contribute
Fast forward to today, life is good and we embrace each much-needed funding to advance research into this horrible
day with a unique perspective on life which, as anyone who disease through Myeloma Australia.
understands this disease knows, it’s far from “normal”. I have This organisation is doing amazing work within the commun-
always had to be on treatment to keep the myeloma from ity and I hope to raise the total amount with your support.
damaging my body.
continues over page
Support Line 1800 693 566 | MyeNews 14Myeloma Australia is the only myeloma specific organisation
in Australia supporting those living with myeloma. Myeloma
Australia provides up to date information and caring support
via their specialist myeloma nurses. All their services are free
of charge and include: Myeloma Support Nurses, Myeloma
Support Line, Information and Support Groups, various
publications both hard copy and online, access to leading
experts via seminars, workshops and video links.
All donations made through my attempt to raise these funds,
will be used by Myeloma Australia to expand their nurse led
services to provide education, support and advocacy to the
myeloma community. These funds will also support their
on-going commitment to myeloma research through their
Medical and Scientific Advisory Group (MSAG).
Myeloma Australia is a not for profit organisation, endorsed
by the Australian Tax Office as a deductible gift recipient
(DGR) and has charity tax concessions status. To ALL of you who donate, thank you for fighting this battle
with us!
I have personally benefitted greatly from the care and
support of Myeloma Australia’s nurses and resources. Please John Cortazzo
help me to support their work. Charity TV Ambassador for Myeloma Australia
From the Nurse Manager
In January, we welcomed three new Myeloma Support In addition, Jo and I have been visiting local Information
Nurses to our team, Deborah Thompson in Tasmania and two and Support Groups talking about the conference and
nurses in the Newcastle and surrounding region, Juliet Hill sharing our learnings. These sessions are always enjoyed
and Rachel McCann. It is exciting to see our team grow and by participants and there are always lots of questions and
have nurses ‘on the ground’ in areas we haven’t previously. healthy discussion generated. For this reason, we have
All three nurses bring with them a wealth of knowledge and decided to include a ‘Best of ASH’ theme to our first seminars
experience and as with our other nurses they work clinically for 2019 to further share some of the new and exciting
in local hospitals caring for people with myeloma. They research that was presented at the conference. We have
are already off to a flying start with events planned in the events in Adelaide, Canberra, Melbourne and Sydney and we
upcoming weeks to meet with the local myeloma community thank our speakers who have generously given up their time
and commence their education and support services. for these education days.
We look forward to supporting and guiding them in their
The Myeloma Support Nurse team are continuing to work on
positions and planning services for the myeloma community.
several projects including several publications in review and
As well as adding three new members to our team, we have development and we look forward to sharing these with you
also been busy informing our members about submitting as they’re completed. Many of you have used our Telephone
their feedback to the Pharmaceutical Benefits Advisory Support Line and our evaluation of this service continues
Committee (PBAC) for their March meeting where three to give us a lot of insight into the value of the service, why
submissions relating to myeloma treatments will be people call and areas for improvement. We will share the full
considered. The PBAC decides which medicines will be results later in the year, however in the meantime we will be
reimbursed by the Pharmaceutical Benefits Scheme (PBS) in making some logistical changes to how we handle the calls
Australia and we are all hoping for outcomes which will make in the coming months which we hope will reduce call back
a positive difference for people living with myeloma. times, put you in touch with a nurse directly and connect you
with your local nurse. Please keep providing your feedback
Late last year, four of us from Myeloma Australia attended
and if you would like to speak with a Myeloma Support Nurse
the American Society of Hematology (ASH) Conference
please don’t hesitate to make contact on our toll free 1800
in San Diego, USA as guests of the International Myeloma
693 566 Telephone Support Line or email: nurses@myeloma.
Foundation (IMF). Steve Roach, Brian Rosengarten, Jo
org.au
Gardiner and I attended the conference and various satellite
events. In this edition of MyeNews you can find out more Nella Combe
about this event in the ASH report and Medical Corner. Manager Nursing and Patient Services
15 MyeNews | www.myeloma.org.auWhat’s happening
Fundraising and
Community Engagement
There was such progress made nationwide
last year in terms of community engagement
& fundraising – yet I hazard a guess that when
the time comes to reflect upon 2019 that we
will see that 2018 was just the beginning of the
adventure!
One of the late highlights of last year was when we
successfully applied for a significant grant from The Dry July
Foundation that will enable us to fund the start-up of six
new support groups across Australia in the early part of this
year. One of the fundraising events I will be encouraging the
myeloma community to become involved in this year
will be Dry July. More details will follow
in the near future via the usual channels
so please consider if you, your friends, We are grateful to The Dry July
colleagues, families et al would be willing Foundation for providing Myeloma
to participate in Dry July to help raise Australia with significant financial
much needed funds for Myeloma Australia. support in their annual funding
round which enables us to establish
In this edition of MyeNews there are several new Support Groups around
a couple of terrific news stories; Pana the country.
Karageorgiou tells the story of his Greek
marathon adventure in memory of his late father, whilst John
you! With help from the myeloma community Santosh
Cortazzo explains why he has decided to become involved as has hosted the first couple of Myeloma Australia BBQs
an Ambassador for Myeloma Australia as we head into a year at Bunnings – these have been great successes, not only
of fundraising activities as a part of our Charity TV adventure. in terms of raising significant money but also in raising
If you are still considering if you or someone close to you awareness as to what myeloma is. If the thought of hosting a
would like to be one of our Ambassadors please get in touch fundraising Bunnings BBQ is something that appeals to you
with me. please drop me a line and we can talk logistics.
If I was to mention fMf to you the chances are high that you Team Myeloma made its first appearance of 2019 at The Sun
would not understand what this acronym represents – and Run on the Northern beaches of Sydney in early February.
rightly so! But as this year progresses you will be hearing a Next stop for Team Myeloma – Mount Everest. True!!
lot more about this adventure. fMf stands for ‘fight Myeloma Hopefully there will be photographic evidence in the next
flight’ and is being headed up by Fred Carter, a Queenslander edition of MyeNews to show that Team Myeloma is spreading
living with myeloma and his Melbourne based mate, Mike. its wings! Post Mount Everest the Team is starting to prepare
Both Fred and Mike are Cirrus pilots (I strongly recommend for the HBF Run in Perth on Sunday 19th May. If you have
that you Google ‘Cirrus aircraft’ as they are impressive running/walking events that you would like Team Myeloma
beasts to say the very least!!) To raise myeloma awareness to participate in please let me know – the more towns and
and funds for Myeloma Australia Fred and Mike will be cities we can raise awareness in, the better.
circumnavigating Australia in an anti-clockwise direction this
In the next edition of MyeNews I am hoping that we will
September. It is a quite audacious project and one in which I
be able to share a couple of truly heart-warming stories of
am very hopeful that the myeloma community will support
fundraising events that will be occurring in March …. watch
in many ways. The possibilities that arise from this project are
this space.
mind-boggling! If you would like more information about
this project than I can provide here do please drop me a line; And to finish, please continue to reach out to me with your
there are certainly opportunities for individuals, Information community engagement & fundraising dreams and ideas. If
and Support Groups and the like to become involved. I can help you bring a concept to life, that’s great! One of the
great privileges of my job is in meeting people who are keen
Up in Sydney, the community engagement & fundraising
to raise awareness and raise funds; I love hearing from you all!
push into NSW is being successfully led by Santosh – if you
are in NSW and have community engagement/fundraising Matt Maudlin
ideas please reach out to Santosh – he’d love to hear from Community Engagement & Fundraising Manager
16 MyeNews | www.myeloma.org.auYou can also read
