MyeNews Autumn 2019 Issue no 49 - Myeloma Australia

 
MyeNews Autumn 2019 Issue no 49 - Myeloma Australia
MyeNews
President’s Report

                Autumn 2019   Issue no 49
MyeNews Autumn 2019 Issue no 49 - Myeloma Australia
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
                                                                            For feedback, comments, questions or stories for consideration
                                                                            Contact Pina Civitarese:
                                                                            (03) 9428 7444 (toll free) 1300 632 100
                                                                            pina@myeloma.org.au

                                                                            If you no longer wish to receive the MyeNews please let us know.

                                                                            Design & layout: Greg Loveder Graphics
                                                                            Printed by Eastern Press

Find us on Facebook and Twitter                                             Front cover photo: Autumn leaves in Bright, Victoria

                                      Office Hours: 9am – 5pm Monday to Friday AEST
                                      Head Office: 333 Swan Street, Richmond, VIC 3121 Post: PO Box 5017 Burnley, VIC, 3121
MyeNews is supported by               T: 1300 632 100 (toll free) T: (03) 9428 7444
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
MyeNews Autumn 2019 Issue no 49 - Myeloma Australia
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

                 Have you been getting our emails?
                 One of the primary methods Myeloma Australia communicates with our
                 community is via email, which we hope you find valuable and of interest.
           Recently there has been an issue with some Myeloma Australia emails going to junk (spam) folders instead of your
           inbox, this was due to an issue with our ISP. We would ask that you please check your junk/spam folder for any
           emails from us. Please mark these emails as safe/not junk/not spam, or alternatively mark our domain
           myeloma.org.au as safe to avoid this problem.
           If you would like to subscribe or receive emails to only some of our communications including any of the following:
           • Seminars/Information & Support Groups
           • fundraising events
           • special announcements (such as new drug listings)
           • our monthly e-newsletter The Muster
           • quarterly magazine MyeNews                                                please contact Alex at
                                                                                     alex.dawson@myeloma.org.au
           At the bottom of our email communications there is an option              or on (03) 9428 7444
           to unsubscribe, if you select this option you will not receive any
           email communications from Myeloma Australia regarding any subject.

                                                                                    Support Line 1800 693 566 | MyeNews        3
MyeNews Autumn 2019 Issue no 49 - Myeloma Australia
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
MyeNews Autumn 2019 Issue no 49 - Myeloma Australia
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
MyeNews Autumn 2019 Issue no 49 - Myeloma Australia
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
MyeNews Autumn 2019 Issue no 49 - Myeloma Australia
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
MyeNews Autumn 2019 Issue no 49 - Myeloma Australia
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
MyeNews Autumn 2019 Issue no 49 - Myeloma Australia
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
MyeNews Autumn 2019 Issue no 49 - Myeloma Australia
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.au
My 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          11
President’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.au
been 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.au
Charity 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      14
Myeloma 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.au
What’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.au
You can also read
NEXT SLIDES ... Cancel