MyeNews
Summer 2016
Issue no 40
Contents
President’s Report
In this issue
President’s Report
3
MyeNews History4
MSAG Inaugural National Myeloma Workshop 6
Profile – Liz De Nittis7
8
Nurses Report
Botanical Art
10
MyeNURSE11
News from NSW
12
Media Release – New drug class gives hope
for better treatments for incurable myeloma
13
Tips and Hints
14
Medicine, Nursing and Health Sciences
15
Myeloma
Support Line
Monday – Friday 9am – 5pm (AEST)
1800 MYELOMA
(1800 693 566)
A confidential service providing those living with
myeloma, their family and friends and health
professionals access to specialist myeloma nurses.
Open to anyone with a question
about myeloma or just to have a chat.
NSW Division Report16
SA Division Report17
Victoria Division Report18
Red Day19
Medical Corner20
Calendar of Events
22-23
Wishing you all a
Merry Christmas
MyeNews – Contact Information
For feedback, comments, questions or stories for consideration
Contact Pina Civitarese:
(03) 9428 7444 (toll free) 1300 632 100
[email protected]
and Happy New Year!
If you no longer wish to receive the MyeNews please let us know.
Design & layout: Greg Loveder Graphics
Printed by Eastern Press
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Front cover photo: La Trobe Univeristy by Pina Civitarese.
2
MyeNews Summer 2016
Myeloma Australia will close for Chriastmas
at 12 pm Friday December 23 and will
re-open at 9am Wednesday January 4
President’s Report
As I mentioned in the last edition, the
Inaugural National Myeloma Workshop was
held at the Yarra Valley Lodge. It began with
a dinner on the Friday night with a welcome
presentation by Professor Doug Joshua
and finished at midday on the Sunday with
Professor Miles Prince. There were thirty
presentations made by physicians and
researchers from Australia and New Zealand
as well as two overseas visiting speakers, Dr
Constantine Mitsiades from the Dana Faber
Cancer Institute in Boston, USA and Professor
Wee Joo Chng from the National University
Cancer Institute, Singapore. There were also
a number of posters displayed showing the
results of various research projects.
About 100 people attended this workshop over the weekend
with the general feedback being very good. We are planning
on holding this workshop every two years as it was an
excellent opportunity for young and established researchers
to present their work to their peers. Prizes were awarded to
the four top papers presented and they went to Dr Mrozik,
University of Adelaide, Dr Hocking, Monash University, Dr
Gong, Walter and Eliza Hall Institute and Dr Low, Walter and
Eliza Hall Institute.
I would like to thank Associate Professor Simon Harrison and
his committee for the concept and contents of this Workshop
and the Myeloma Staff for the efficient way they managed
the weekend.
The Services Committee is preparing a five year plan of how
we want to grow our services. Our initial thoughts are that we
need to increase the number of nurses by another three so
that we can increase our level of support to a larger number
of our community and spread the word throughout Australia.
To do this we need to raise larger amounts of funds and the
first step is that we have now employed a fund raiser in Liz
De Nittis to help. We welcome her to Myeloma Australia and
wish her all the best.
Finally she had the operation and everything went very
smoothly with the overactive gland removed. Her calcium
levels are finally getting back to normal for about the first time
in a very long time and as she recovers from the operation we
are hoping that she will be feeling very much better.
We have now celebrated Ros’ birthday and the 20th
anniversary of her diagnosis with myeloma. To Ros this has
been a very important milestone and we are planning now
for the next 20 years.
In December our CEO Steve, Victorian support nurse Nella
and myself are off to San Diego, USA to attend the American
Society of Haematology’s Annual Meeting and all the
associated meetings tagged on. I am looking forward to
hearing about the further advances in myeloma treatments
and the latest research on the new drugs. We will report on
the meeting in the next edition.
Best regards
I would like to give an update on my wife’s personal journey
which I outlined in the last edition. Briefly, her calcium
readings had become very high and after several tests and
about five different doctors she was referred to a surgeon
with the plans to remove a para-thyroid gland which was
overactive. On the day before the operation Ros had a heavy
cold and the operation was postponed for three weeks. We
had been due to go on holidays to Far North Queensland
with our two children and our six grandchildren to celebrate
our birthdays but this had to be cancelled because of the
pending operation.
Summer 2016 MyeNews
3
MyeNews History
Look how far we’ve come!
from strength to strength and continues to grow in a steady
and positive way. This has of course been made possible by
a small group of Founders who had a strong belief in a cause
that not many people were aware of, and the continued work
by volunteers, staff, the Board and so many other people.
Reproduced on the next page is the front cover
of the first edition of the MyeVic newsletter,
which has evolved into the MyeNews magazine
we produce today. The first edition from
November 1999 was four pages long and
included up to date information of the day.
We always welcome new stories, tips, contributions and
ideas that will help us improve the MyeNews, so if you
have anything to share please feel free to send it in for
consideration to [email protected]
That hasn’t changed except for the fact that there is plenty
more of it as well as patient stories, fundraising, event news,
state reports and news from around the World.
MyeNewsMyeNe
ws
MyseNews
We often receive feedback from supporters about how
much they enjoy the articles and look forward to reading the
magazine. We could not produce it without the contribution
of so many people from doctors, scientists,
state representatives, our nurses and of course
our readers and supporters.
We are very proud of the journey we have
travelled so far and are excited about
where we are headed in the future.
Myeloma Australia has gone
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Photo © Nella Combe
Steve, Bob & Brian.
4
MyeNews Summer 2016
From the archives…
Summer 2016 MyeNews
5
MSAG Inaugural National Myeloma Workshop
By Elizabeth Johnson
For some time, the MSAG had planned
to hold a myeloma-specific workshop to
L-R: Dr Peter Mollee, A/Prof Dipti Talaulikar, Dr Hang Quach, Prof Andrew Roberts
& Prof Joy Ho.
increase the engagement of the national
scientific and clinical communities
monitoring, to new therapeutics. Two international invited
around myeloma research. The untimely death of Prof
speakers added greatly to the meeting: Prof Wee Joo Chng
Laurence Catley in September 2015 provided the impetus to
from the National University Cancer Institute, Singapore, who
bring the Workshop to fruition. Laurence was an outstanding
is a world-renowned genomics expert; and Prof Constantine
myeloma clinician-scientist with a long list of achievements
Mitsiades of the Dana Farber Cancer Centre, Boston USA,
in the ‘bench-to-bedside’ translation of discoveries to
whose work focuses on novel therapeutic targets.
improved treatments and understanding of the immune basis
A former colleague of Laurence Catley, Constantine was
of the disease.
an ideal choice to deliver the inaugural Catley Memorial
Prof Simon Harrison took the reins as Convenor, ably assisted
Lecture. He highlighted the key principles and discoveries
by a program committee comprising Prof Joy Ho, Deputy
of Laurence’s work, their lasting impact and how they have
Chair of MSAG, and Prof Andrew Spencer. Myeloma Australia
helped shape the important therapeutic advances now being
took up the challenge of managing the meeting logistics and
seen in myeloma. He also spoke movingly about Laurence’s
did a sterling job.
scientific integrity, his ethical approach to science and
The program covered scientific and clinical presentations from his overriding principle of care for patients. The memorial
the biology of plasma cells, through genomics and disease
oration was rounded out with presentations from three
brilliant junior scientists, worthy
winners of the Catley awards, and
who demonstrated that those
principles continue among the
new generation of researchers. It
was a particular honour to have
Laurence’s parents, Bob and Patricia
Catley present for the ceremony,
having driven over from Adelaide.
They were pleased to meet with
Constantine and some of Laurence’s
colleagues from South Australia
and Queensland.
L-R: Brian, Nella, Steve, Alex & Hayley.
6
MyeNews Summer 2016
Formal evaluation feedback from the
meeting indicated that the quality
of all aspects of the Workshop was
highly rated (with the exception that
participants wanted more time for
discussions!). The content appealed
equally to scientists and clinicians,
with the majority indicating they
Photo supplied and used with permission
Now in its 10th year, MSAG
was delighted to celebrate its
anniversary by staging the
Inaugural National Myeloma
Workshop. The Workshop was
held in beautiful surrounds at
Yarra Valley Lodge over the
weekend of 9-11 September
and attracted an audience of
more than 100 from around
Australia and New Zealand.
Prof Simon Harrison, Bob & Patricia Catley
& Prof Constantine Mitsiades.
Prof Wee Joo Chng, Prof Simon Harrison & Prof Constantine Mitsiades.
had made new contacts with whom they were planning
to follow up after the meeting. Thus the fostering of new
translational research connections appeared to have been
successfully engendered.
The outstanding success of this inaugural Workshop and
the demand expressed for future opportunities will see this
conference become a biannual event.
Profile
Liz De Nittis
Liz De Nittis was recently appointed as the
Fundraising Executive with Myeloma Australia
and brings to the organisation nine years of
successful experience and skills in the
not-for-profit sector.
During these years Liz was appointed to senior positions
with the Cancer Council Victoria as Chairmanager, FIA Vic
Board as Sponsorships Director and the President of the
Rotary Club of Albert Park in 2012-2013. These positions
were a credit to her reputation in community fundraising.
Photo © Pina Civitarese
Graduating with a Degree in Management in 2015, Liz
based her entire units of study on the NFP sector and this
has attributed to her valuable knowledge together with
additional courses and networking in the fundraising sector.
Liz has been an active member of her Rotary club for the
past 17 years and is also an active member of her local life
saving club. Her daughter has been a member of the club
for nine years and is competing this year to represent the
State in the National Championships. They both love being
active in outdoor sports.
Summer 2016 MyeNews
7
Nurses Report
Over the last three months, our myeloma
support nurses have been involved in a number
of education programs and conferences as well
as planning the 2017 calendar.
In September, Jo hosted a ‘Myeloma Quiz Night’ in Adelaide
with the HSANZ nurses group. Each nurse was given a
copy of Myeloma Australia’s Comprehensive Guide which
they could use to find the answers to the questions asked.
It was a very successful night and we hope to expand the
educational evening into our other states next year.
Also in September, Nella attended the MSAG Inaugural
National Myeloma Workshop in the Yarra Valley where we
had two guest speakers Professor Constantine Mitsiades
(USA) and Professor Wee Joo Chng (Singapore) as well as a
number of Australian speakers both clinicians and scientists.
It was a great opportunity to hear about research and
network with others who have a special interest in myeloma
and its treatment.
In November, the annual Australian Haematology
conference (HAA) was held in Melbourne with Jo, Nella and
Stuart attending lectures and master classes lead by world
renowned myeloma clinicians. The first HSANZ symposium
of the conference was a ‘Myeloma Update’ where we heard
from Professor Andrew Spencer on biology of myeloma
followed by a presentation by international speaker
Professor Thierry Facon from France on ‘Optimal treatment
ASH San Diego, USA.
in de novo and myeloma in first relapse’; two excellent
talks and very relevant to our roles as support nurses. The
international nurse speaker Sandy Kurtin was brilliant and
we all gained a lot from her talks on living with cancer from
the lens of the survivor and from the lens of the caregiver
and the nursing masterclass presentation ‘The continuum of
care in MM redefined’. During HAA we attended a breakfast
meeting where we were updated on the Myeloma and
Related Disease Registry (MRDR) and heard about some
of the data that is already being generated by the project
and the nurses spent time with Brian and Steve on the
trade stand meeting clinicians from across Australia and
promoting our resources and services.
HAA Stand Melbourne.
8
MyeNews Summer 2016
At the end of November, Nella is travelling to San Diego
for the annual American Society of Haematology (ASH)
conference. She will be representing the nurses and will
meet up with our international counterparts, attending
advocacy meetings and attend lectures to hear about the
latest research and clinical trial data from around the globe.
Photos © Nella Combe & Pina Civitarese
MSAG Inaugural Workshop.
From the Support Line
We recently had a call from a man in his 40’s
who had just returned from his haematologist
appointment. He was responding well to his
initial treatment and the haematologist had
discussed with him the option of having a
donor (allogeneic) transplant. He wanted to
know more about what was involved with a
donor transplant and what was the difference
between an allogeneic and autologous
transplant. They spoke for around 25 minutes
and during this time the myeloma support
nurse was able to answer his questions about
the processes involved, treatment aims, stem
cell collection, potential side effects and where
to find further information.
ASH, Brian Rosengarten & Susie Novis IMF.
The nurses have also been working on a survey for our
support groups as we recognise that an important aspect
of our nursing work is to continuously evaluate what we are
doing so that we ensure we are best meeting the needs of
the myeloma community. With this in mind, it is envisaged
that an evaluation of the support groups will be undertaken
early in 2017. It is hoped this will provide us with some
useful statistical data but more importantly enable us to
recognise areas of improvement in our current model, we
are looking forward to hearing from participants and what
recommendations they have.
As we quickly approach the end of 2016 it is an exciting time
to be part of Myeloma Australia and the wider myeloma
community. We look forward to an even busier 2017 and
hopefully a few steps closer to our ultimate goal- a world
without myeloma.
Nella Combe
Jo Gardiner
Jacqui Keogh
BUSINESS OF WINNING LUNCHEON 2017
Photos © Pina Civitarese and used with permission.
The Business of Winning Luncheon will be held at the MCG Members Dining Room on Friday 10th March 2017.
Speakers include Geelong, Sydney and Carlton great and duel Brownlow medallist Greg (Diesel) Williams,
Collingwood legend Peter Daicos, Footscray Bulldogs Vice President and Australian of the year nominee
Dr Susan Alberti AC, legendary AFL coach David Parkin with more people to be confirmed.
TICKETS WILL BE AVAILABLE FROM
JANUARY 2017 THROUGH TRYBOOKINGS.COM.AU
Summer 2016 MyeNews
9
Botanical Art
Myeloma Australia would like to
introduce Patricia Elizabeth Ball
Victoria State Opera and then Opera Australia. In addition to
many Oratorio and concert engagements, Patricia had a long
association as a soloist with the Bach Festival at Christ Church
South Yarra.
Patricia’s involvement with the Myeloma Foundation came
in response to her daughter Alexandra’s diagnosis in 2011.
Alex underwent an initial treatment with Lenalidomide and
a stem cell transplant, as well as having a pin inserted in
her left thigh-bone. Alex maintains a career in music as a
piano teacher and conductor with the National Boys Choir of
Australia, and Director with Melbourne Gang Show. She also
enjoys an active recreational life, snow and water skiing each
year, and travelling overseas (but not as frequently as she
would like!).
Alex & Patricia.
A professional background in art and music is the backdrop
to Patricia Ball’s botanical artwork. A child of English
immigrants, she was encouraged to explore
the beauty of the natural world and was
surrounded by active music making
in the home. Her love of art led
her to complete training as an
art teacher, and she taught
in Geelong and England
in the late 1950s. After
raising three children,
Alexandra, Michael
and Martin, she
returned to work in the 1970s, teaching in
several Melbourne secondary schools.
In parallel with her teaching, Patricia also
enjoyed a 33-year professional singing
career as a mezzo-soprano with the
10 MyeNews Summer 2016
In her retirement, Patricia continues to sing, presenting
concerts to raise funds for charity, with active support from
husband David. On some occasions she is also joined by
her children Alexandra and Martin. When the flowers are in
bloom, and there are no rehearsals to prepare, she finally
finds time to paint!
A beautiful series of botanically inspired greeting cards
painted by Patricia, will be sold via Myeloma Australia.
Patricia and husband, David have kindly donated the cards
and all proceeds will help continue our services.
Photos © Pina Civitarese
Patricia Ball with some of her work.
MyeNURSE
Nurses work to help
improve the lives of those
living with myeloma: An
update from the HSANZ
Myeloma Nurses Group
It’s been a busy 2nd half of the year for the myeloma nurses
group with hosting of our first annual myeloma nurses
seminar at the Alfred hospital in Melbourne; the creation of a
communication App ‘myeNURSE’ for our group and a variety
of other projects and work in progress. I include a summary
of a few achievements in this brief report.
“My Muscles”: A program to improve strength, vitality and
overall health for those living with myeloma
Jacqui Jagger, Nurse Practitioner in Haematology at Gosford
Hospital (NSW), has been working on collaboration between
the Central Coast Myeloma Support group (CCMSG), the
Leukaemia Foundation and local exercise physiology to
provide a myeloma specific exercise program. After a few
months of preparation the 1st 8 week ‘pilot’ program began
on October 20th. Jacqui says “don’t worry if your lycra workout
gear has been in the back of the wardrobe since 1984, we
won’t be doing that kind of exercise! Please wear comfortable
clothes, walking shoes and bring a drink bottle along”.
“My Muscles” aims to improve strength, vitality and overall
health for people with myeloma by adding exercise
physiology to their existing treatment plan. Participants
will develop an individualised exercise plan with an
accredited Exercise Physiologist Anna, which will be
adjusted throughout the program. Anna will also lead group
discussions to help build knowledge and confidence in
exercising with myeloma. Partners and carers are welcome
to join the fun. Medical clearance is essential for everyone!
My Muscles is funded by CCMSG from monies raised at the
annual myeloma movie night.
Registry (MRDR), and had the opportunity to update those
110 nurses in attendance, to the work of our M-SPN.
It is clear from listening to the speakers deliver their
presentations that MM remains a complex blood cancer with
new understanding of tumour biology and the bone marrow
microenvironment, providing new targets for treatment.
Prof Spencer outlined some of the newer targeted therapies
we are able to access in Australia through clinical trials and
expanded access programs. Dr Gibbs, Director of the VIC/TAS
amyloidosis service presented an overview of amyloidosis,
with a focus on systemic AL amyloidosis (monoclonal Ig
light chain). A key message form his talk was that AL
amyloidosis is a treatable condition with early diagnosis
and use of new targeted therapies (as per MM), improving
outcomes for patients.
The afternoon session focused more on supportive care in
myeloma with Daniela Klarica presenting an overview of
disease and treatment related effects in MM with a focus
on bone and renal issues. She reinforced the nurses role
in managing common symptoms and early identification
and of side effects to improve outcomes overall. Trish Joyce
completed the formal program with an excellent overview
of the challenges of identifying and managing infections
in this very vulnerable patient group. Infections remain a
significant challenge in MM and the nurse’s role in education,
assessment and management was again highlighted.
If you live in the local Gosford area in NSW and would like
to find out more about the CCMSG or the “My Muscles”
program, please contact:
Photos supplied and used with permission
• Jacqui Jagger (CCMSG coordinator)
• (02) 43209641 or [email protected]
The Inaugural M-SPN Nurses Annual Educational Seminar
2016, The Alfred Hospital, Melbourne: ‘Making sense of a
complex cancer: clinical updates and treatment approaches’
The nurses group held its first annual educational seminar
at The Alfred Hospital in Melbourne on 6th August. Our
focus was on clinical updates and new treatments with a star
cast of speakers from The Alfred, VCC, Box Hill and Monash
University presenting on a range of subjects aligned to best
practice in the treatment of myeloma and amyloidosis. We
also had an update form the Myeloma and Related Disease
Tracy King recognised for her contribution to the myeloma community
as an international affiliate of the IMF Nurse Leadership Board.
Summer 2016 MyeNews
11
Our group aims to host an annual nurses meeting and plans
are well underway for 2017.
The International Myeloma Foundation (IMF) recognises
nursing contribution to the myeloma community – The IMF
Nurse Leadership Board celebrates 10 year anniversary
As one of only 2 international affiliates of the IMF Nurse
Leadership Board, I recently attended the annual meeting
in Boca Raton, Florida. I believe I was on the plane as long as
I was at the meeting! Hosted by Diane Moran from the IMF
and chaired by Beth Faiman and Kevin Brigle, the nurse’s
board worked towards a range of educational and research
projects and publications relating to supportive care in
myeloma. At a dinner meeting that night celebrating 10 years
of the nurses group, the nurse members were recognised by
Diane Moran and the IMF “for their distinguished service to
the myeloma community”.
International nurse expert attends
Haematology Annual Conference in Melbourne
Sandra Kurtin, Nurse Practitioner, Clinical A/Professor
of Medicine and Adjunct Clinical A/Professor of Nursing
at the University of Arizona Cancer Centre (USA) was
our international nursing speaker at this year’s annual
Haematology conference. Sandra has over 30 years’
experience in caring for those with blood cancers with
a specialist interest in Myeloma and Myelodysplastic
syndromes. Alongside looking after those living with blood
cancers Sandy is undertaking her PhD research studies
focusing on caregivers needs and reducing symptom
burden. Sandy gave several wonderful lectures during the
conference including a nursing ‘Masterclass’ on managing
patients undergoing treatment for myeloma. We benefited
greatly from Sandy’s time with us in Australia, learning much
from her experiences and expert knowledge. Sandy was
L-R: Sandy Kurtin (USA), Rosie Hoyt (NZ), Julija Sipavicius (Aus) during
HAA 2016 Melbourne.
kind enough to participate in some extra visits whilst here,
attending meetings at several Melbourne hospitals and RPA
in Sydney on her way home to the USA. Our group has made
plans to remain in touch with Sandy and will be working on
some joint projects ahead.
Do you have a nurse with a specialist interest or role in
myeloma? Why not recommend they join our group?
If you have a nurse who you feel has an interest in myeloma
or would like to join our group and benefit from extra
information, education and mentorship from other nurses
– please encourage them to contact the nurses at Myeloma
Foundation who can tell them more. 1300 632 100
Alternatively interested nurses can contact me directly
at:[email protected]
Tracy King RN MN
Chair HSANZ NG Myeloma Nurses Group
A guide for people with myeloma
The updated version now available for download on our website
www.myeloma.org.au/information/
Please note that this is an online version only, there are no hard copies
available at this stage.
12 MyeNews Summer 2016
Photo supplied and used with permission
Managing Peripheral Neuropathy
Media Release
“Our research shows that switching off MCL-1 has the
potential to be effective new treatment approach for the
majority of patients with myeloma,” Dr Gong said.
New drug class gives hope
for better treatments for
incurable myeloma
Melbourne researchers have discovered that a
new class of anti-cancer agents may be effective
in treating multiple myeloma, an incurable
bone marrow cancer.
The research revealed that the majority of myelomas rely
on a protein called MCL-1 to stay alive. Potential drugs that
inhibit MCL-1, which are in pre-clinical development, may be
a promising new treatment for multiple myeloma.
Each year more than 1700 Australians are diagnosed with
multiple myeloma, which is a cancer of immune cells called
plasma cells. Currently available treatments are only able to
halt the progression of the disease and relieve symptoms,
but cannot cure the disease.
Walter and Eliza Hall Institute researchers Dr Jianan Gong,
Dr David Segal, Ms Yuan Yao, Professor Andrew Roberts and
Professor David Huang, working with researchers at the
Australian Centre for Blood Diseases, Monash University and
the Alfred Hospital, investigated the ‘survival proteins’ that
keep myeloma cells alive, allowing the cancer to persist.
The survival of many cancer types relies on a family of related
survival proteins called BCL-2 family proteins, Professor
Huang said. “In the past decade there has been considerable
interest in the using anti-cancer agents called ‘BH3-mimetics’
to kill cancer cells by blocking the BCL-2 family proteins,” he
said. “Recent clinical trials have demonstrated that a BH3mimetic that switches off the protein BCL-2 is an effective
treatment for certain forms of leukaemia.
“Our latest research has focused on which BH3-mimetics
would be the most effective in treating multiple myeloma,
a cancer for which new treatments are urgently needed,”
Professor Huang said.
Dr Gong said the team discovered that the majority of
myeloma samples died when MCL-1 was switched off. “In
contrast, only around one-quarter were susceptible to
inhibiting BCL-2,” she said. “This finding is in keeping with
earlier research at the Walter and Eliza Hall Institute that
pinpointed MCL-1 as the likely protein that keeps myeloma
cells alive.
Professor Roberts said that there had been considerable
interest in developing anti-cancer agents that target MCL-1.
“As yet, these inhibitors are still in pre-clinical development,”
he said. “Our results suggest that, once necessary laboratory
testing for safety is completed, clinical trials of their
effectiveness in treating patients with multiple myeloma
that is no longer responding to current therapies would be
well justified.”
The research was published in the journal Blood.
Ms Yao is a medical student Tsinghua University, Beijing,
who is a visiting Masters student at The University of
Melbourne. Professor Roberts is a clinical haematologist at
The Royal Melbourne Hospital and holds the Metcalf Chair of
Leukaemia Research at The University of Melbourne.
The research was supported by the National Health and
Medical Research Council, Cancer Council Victoria, the US
Leukemia and Lymphoma Society, the Australian Cancer
Research Foundation, the China Scholarship Council and
the Victorian Government Operational Infrastructure
Support Scheme.
The Walter and Eliza Hall Institute is the research powerhouse
of the Victorian Comprehensive Cancer Centre, an alliance of
leading Victorian hospitals and research centres committed
to controlling cancer.
For more information contact Vanessa Solomon,
Communications Adviser, on +61 3 9345 2971,
+61 431 766 715 or [email protected].
In 2017 we will be publishing limited
advertisements and promotions in
our quarterly MyeNews for the first time.
If you would like to promote
business or services to
the myeloma community
Australia wide call Liz at
our offices on 03 9428 7444
for details.
All advertisements will be
subject to Myeloma Australia’s
editorial discretion.
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ma.org.
Summer 2016 MyeNews
au
13
Tips and Hints
Tips & Hints is from the M-SPN article by Lauren Atkins from Peter MacCallum Cancer Centre
Eating well before, during and after your treatment can improve your treatment tolerance, quality
of life and survival.
DID YOU KNOW:
34% of Victorian
haematology patients
are malnourished?
During treatment, it is important to try and maintain your weight. Weight lost during
treatment is often from your muscle mass. This can reduce your strength and energy
levels in the short term, and can also slow your metabolism meaning you’re more likely
to put on weight in the long term.
Choose a well-balanced diet rich in quality protein foods like meat,
chicken, fish, eggs, nuts, seeds, legumes and dairy products.
Speak to a dietitian through your hospital or GP if you
are worried about your nutritional intake, eating less than
usual or losing weight.
High
protein
Piňa Colada
Smoothie
Recipe
DID YOU KNOW:
A ‘chronic disease
management plan’ through
your GP can gain you access
to 4 subsidised dietitian
visits per year.
“I know nothing about the subject, but I’m
happy to give you my expert opinion!”
INGREDIENTS:
2. 1 frozen banana
3. ½ cup pineapple (fresh, frozen or tinned)
4. ½ cup coconut milk or coconut cream
5. ½ cup ice
6. 2 tbsp honey
7. 1 serve vanilla protein powder
(e.g. 3 scoops Sustagen or 1 scoop whey protein)
8. 1 tablespoon of shredded coconut
Method: Blend all ingredients in blender until
smooth.
TIPS:
• Substitute mango or avocado in place of
pineapple for different flavours
• Leave out the shredded coconut if you
have painful mouth ulcers or a sore throat
If in doubt,
ask a real expert –
an Accredited
Practising
Dietitian
Request a referral through your hospital or GO, or find a dietitian locally at:
http://daa.asn.au/for-the-public/find-an-apd/
14 MyeNews Summer 2016
Medicine,
Nursingand
andHealth
Health Sciences
Sciences
Medicine,
Nursing
News from the Myeloma and Related Diseases Registry
News from the Myeloma and Related Diseases Registry
Recruitment update
Recruitment
update
In November we
reached over
1370 patients registered
on the MRDR. This would not be possible without the
In November we reached over 1370 patients registered
support of all participants and participating hospitals. We
on the
MRDR.
This
wouldapproved,
not be possible
without the
now
have 24
hospitals
with Epworth
support
of
all
participants
and
participating
hospitals.
We
Freemasons and Liverpool Hospital amongst the most
now have
24
hospitals
approved,
with
Epworth
recent. Hollywood Private Hospital in Western Australia is
Freemasons
the most
also now and
activeLiverpool
and severalHospital
new sitesamongst
in Queensland
will soon
Medicine,
Medicine,
Nursing
and
Nursing
Health
and
Health
recent.
Private
Hospital
in Western
Australia
is Sciences
be Hollywood
coming on board.
Sciences
also now active and several new sites in Queensland will soon
Takeda
Corp continue to support the MRDR. We
be coming
on board.
News from
News
thefrom
Myeloma
the Myeloma
and Related
and Related
DiseasesDiseases
RegistryRegistry
appreciate their support which enables this important
research
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Takeda
Corp continue
to support the MRDR. We
appreciate their support which enables this important
Newtostaff
research
continue.
RecruitmentRecruitment
update
update
In November
we In
reached
November
we
1370reached
patients
over
registered
1370who
patients
The MRDR welcomes
Gordana
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a Research
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registered
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the MRDR.
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support of all participants
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Prof. Andrew Spencer presenting at the MRDR breakfast meeting at HAA.
have 24
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Western
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Australia
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be coming on board.
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represented
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Summer
2016
MyeNews
15
NSW Division Report
As 2016 rapidly draws to
a close I thought it fitting
to reflect on my short time
with Myeloma Australia.
It has been a busy and
interesting seven months
since beginning my role
as NSW Support Nurse.
It seemed appropriate
that I commenced as the
Support Nurse in May Jacqui Keogh.
Myeloma Awareness month.
During my first few weeks I attended the National Myeloma
Day which was held at the Royal North Shore Hospital (in
conjunction with the Leukaemia Foundation). The theme this
year was ‘The Immune System- Friend and Foe’ and was well
attended with over 100 participants.
As many of you may be aware, my appointment was the
beginning of a new collaboration between Myeloma
Australia and the Cancer Council (CC) NSW. I am based at the
CC Sydney office at Woolloomooloo which provides a very
supportive environment. Being based in the 13 11 20 office
(CC Information and support line) fits well with the Myeloma
support line role and I now co facilitate the fortnightly
Myeloma Telephone Support group with the CC. This is a free,
state wide service and provides a valuable opportunity for
those individuals living with Myeloma to access support from
the comfort and privacy of their home. If you are interested
in joining the myeloma telephone support group you can
either contact me through Myeloma Australia or the Cancer
Council directly on call.
View of Sydney.
Over the past few months I have been busy getting out
and meeting people and attempting to visit as many of the
support groups as possible. NSW has a large geographical
spread and there are currently five Myeloma Information
and Support Groups; Royal Prince Alfred (RPA), Westmead,
Central Coast, Newcastle and Shoalhaven. As I am sure
you can appreciate the geographical spread and number
of support groups presents challenges working only two
days per week. However, by the end of the year I hope to
have visited all the groups at least once. My most recent
visit was to the Central Coast to meet with Jacqui Jagger
and the support group at Gosford. I was warmly welcomed
and participated in lively and interesting discussions. Many
of the participants of this group were also part of the “My
Muscle” pilot program. This is a myeloma specific exercise
program that is referred further in Tracy King’s Myeloma
Nurses report. The benefit of exercise has been a recurring
topic at all the meetings throughout the year.
All the support group leaders are doing an amazing job and
I will continue to work with them next year as needed to
secure speakers and attract new members to the groups.
As we move towards 2017 planning is beginning for the
various myeloma related education workshops and seminars.
Please look out for future dates for NSW activities in 2017. I
look forward to meeting many more of you in the myeloma
community next year.
Jacqui Keogh
Myeloma Support Nurse
Peripheral Neuropathy booklet available
online at www.myeloma.org.au
16 MyeNews Summer 2016
Photo supplied and used with permission
As part of the Myeloma Support Nurses group (Hayley,
Nella & Jo) across the states we review and develop
publications, presentations and workshops. There has been
an update to the Peripheral Neuropathy guide as well as the
Comprehensive Guide both of which are available on the
Myeloma Australia Website, www.myeloma.org.au
SA Division Report
By Ian Driver
We have been very busy since the last magazine, with
meetings, activities and a seminar and I have been so grateful
for the help from my fellow committee members for filling in
for me while I’ve been sick, especially our support nurse, Jo
Gardiner and committeeman Dom Scoleri.
In October, we had an oncology massage therapist, AnneMarie Halligan explain what the therapy entailed and
how it can help cancer patients. Many studies have been
undertaken and there are statistics showing improvements
for patients in areas like pain management, fatigue, anxiety,
nausea and depression. This slower form of massage
stimulates the cell surface receptors which helps the immune
system. Some hospitals and wellness centres are taking up
this therapy.
At the December meeting, we tackled the topic of pain
management. We had Dr. Medhat Wahba from Flinders
Medical Centre explain how pain pathways and different
families of pain medications work. He emphasised that
treating chronic pain is about caring for the whole person,
mentally, emotionally and physically. How chronic pain
is felt depends on an individual’s previous exposure to
pain, emotional and medical history, social support, level of
physical activity and determining if the cause of the
pain aligns with what the patient perceives is the cause of
their pain.
The Mid-North Support Group had their regional seminar
on Saturday, 19th November with great speakers, Dr. Cindy
Lee, a haematologist from the Royal Adelaide Hospital
(RAH), talking about myeloma, treatment, drugs and clinical
trials. Dr. Lawrie Palmer from the Pain Management Unit
at Modbury Hospital explained how modern drugs can
minimalize the pain caused by myeloma and the side
effects of the treatment drugs. The Mid-North is his area
of influence, so he was a useful choice of speakers. On all
reports, there was a good turnout and a good day.
Anne-Marie Halligan & Jo Gardiner.
The South-East Support Group have been going along very
well in its short history. Being a long way from treatment
centres in Adelaide, the patients & carers have bonded
very well and become a very tight social unit. They are now
looking towards their next main event with the regional
seminar on Friday, 10th February, 2017. We have been very
fortunate to secure Stuart McDonald, Myeloma Australia’s
Holistic Consultant as key speaker, with our support nurse,
Jo Gardiner as second speaker.
Snowtown Seminar.
We are very grateful to Assoc/Prof. Andrew Zannettino for
allowing us to, once again visit his Myeloma Laboratory in
the SAHMRI Building on North Terrace, Adelaide. Andrew is
always a great host and tour guide and has already offered us
another tour, probably in April, 2017.
Photos © Ian Driver
The Committee is already planning on guest speakers for
next year’s support group meetings and seminars, so we
hope everyone gets behind these events.
We hope that everyone has a Merry Christmas and a happy
and healthy New Year and continue to support each other
in 2017.
Dr. Medhat Wahba.
Ian Driver, Chairman
T: 08 8552 6097
E: [email protected]
Summer 2016 MyeNews
17
VIC Division Report
By Nella Combe
The Victorian information and support groups continue to
provide the opportunity for people with myeloma and their
carers, to come together and hear from a variety of speakers,
ask questions and share knowledge.
Our Mount Eliza group had a presentation from the Nordic
Academy about the benefits that this particular type of
exercise can have particularly for those with balance issues,
fatigue, weakness and peripheral neuropathy. Patrick was an
energetic speaker and we hope to have him present at some
of our support groups next year.
At our Geelong and Beaumaris groups we had some new
members attend for a Q&A session. These sessions are
Geelong Support Group Xmas lunch.
always interactive and enjoyable, the group can guide the
discussions and share information from their experiences
to help others. An example of some of the many topics
discussed include side effect management, stem cell
transplants, clinical trials and monoclonal antibodies
for myeloma.
Our Kew group has two new leaders, Jill and Helen who
have been involved as members of the group and Victorian
Committee for a number of years. They have been very
proactive in their new roles and have already completed an
evaluation of the group in the form of a survey to help guide
them in their roles and make the meetings as productive as
possible. From the evaluation we have received feedback
that participants like the current structure and have provided
some very good suggestions for future topics of discussions
and speakers. A number of people commented on the
importance of the ‘social aspect’ of the meetings as being
equally as important as the presentations and speakers.
This provides the opportunity for members to mingle over a
cuppa and discuss things in a less formal way.
The final meeting of the year for each of the groups is an
informal Christmas lunch at a local eatery which the groups
have organised. Next year we will start a new group at the
Coburg Library which will meet second monthly. It is the
first information and support group in Melbourne’s northern
suburbs and we are looking forward to bringing together the
myeloma community who are seen at hospitals such as the
Austin, Western, Northern and Peter MacCallum.
Jo Gardiner.
Prof Miles Prince at La Trobe.
La Trobe Seminar,
18 MyeNews Summer 2016
Photos © Nella Combe, Pina Civitarese & supplied
Helen, Linda & Catherine at La Trobe Seminar.
In November, our annual
LaTrobe seminar hosted
Professor Miles Prince
and our South Australian
Support Nurse Jo
Gardiner. The ‘Myeloma
Overview’ presented by
Professor Miles Prince
was very interesting and
covered the usual topics
of myeloma pathology
and treatments but
also included a large
La Trobe Seminar.
discussion on genetic
mutations and the notion of providing tailored treatments to
individuals in the future. Jo Gardiner spoke about supportive
care including myelosuppression, thrombosis, peripheral
NMD.
neuropathy and managing the side effects of steroids. Both
speakers presented very well with participants taking notes
and asking a lot of great questions throughout the morning.
The seminar also signified the twelve month mark for me as
the Victorian Support Nurse at Myeloma Australia. I can’t help
but reflect on the last twelve months and all that we have
achieved. I recall being at the seminar twelve months prior
amazed at the energy of the Victorian group, I could see that
I was entering something very special and felt very privileged
to be a part of it. I have learnt so much from the group and
have met some truly wonderful people, I am incredibly proud
of all that we have achieved in the last year and look forward
to building on this in 2017.
Thank you and I wish you all a very happy holiday season and
new year.
MSAG
Nella Combe
Myeloma Support Nurse
RED DAY
Toula Loizos was a language teacher of an extraordinary
calibre at Blakehurst High School since 2005. In that time she
not only excelled in her instruction of the Greek language
but also made a very tangible difference in the lives of the
students that she taught.
Toula was one of those rare teachers who knew how to
encourage and bring out the best in the students she taught.
Despite her own personal battle with multiple myeloma,
Toula never once allowed it to cloud or interfere with what
she saw as her duty and responsibility towards her students.
She was admired by her students and colleagues alike for her
unwavering enthusiasm, educational prowess and her ability
to see the positive in every situation.
As Toula’s favourite colour was red, Red Day was held in
her honour. The students set up food stalls selling red food
and raised $1,100. The day was not only to raise funds for
Myeloma Australia, but also to commemorate the life of a
truly remarkable teacher and colleague. Although she is no
longer with us she will never be forgotten and Blakehurst
High has committed to holding this fundraiser on an annual
basis in her memory.
Summer 2016 MyeNews
19
Medical Corner
Daratumumab, Lenalidomide and Dexamethasone in
Relapsed or Refractory Myeloma
(New England Journal of Medicine October 2016)
In the phase IIb STORM trial, the overall response rate (ORR)
with selinexor was 20.5% among 78 patients with relapsed/
refractory multiple myeloma.
This was a randomized, open-label, multicenter, phase
III trial designed to assess the benefit from addition of
daratumumab to lenalidomide and dexamethasone vs
lenalidomide and dexamethasone alone in 569 patents with
relapsed and/or refractory multiple myeloma.
Adding Carfilzomib Improved Health-Related QoL
for Multiple Myeloma Patients
(Journal of Clinical Oncology)
Adding daratumumab to lenalidomide and dexamethasone
significantly lengthened the duration of progression-free
survival (12 months PFS, 83.2% vs 60% for daratumumab
and control groups, respectively) among patients who had
relapsed or refractory multiple myeloma
The addition of carfilzomib to lenalidomide and
dexamethasone (KRd) improved health-related quality of
life (QoL) compared with treatment with lenalidomide/
dexamethasone alone (Rd) among patients with relapsed
multiple myeloma enrolled in the ASPIRE trial. These
improvements were achieved without any negative affect on
patient-reported symptoms, according to a study published.
Evaluation of Serum-Free Light Chains for Response in
Light Chain Multiple Myeloma
(Blood October 2016)
Results of the primary analysis of the trial showed that
patients assigned to KRd had significantly longer progressionfree survival compared with patients assigned to Rd.
This study compared analyses of urine and serum samples
from 113 patients with multiple myeloma expressing light
chains only (light chain multiple myeloma; LCMM) enrolled
in the IFM-2009 trial. Free light chain (FLC) proteins were
detected by monoclonal antibodies in 100% of the serum
samples compared with 64% of the urine samples in which
FLC was detected by urine protein electrophoresis (UPEP).
Progression-free survival was poor for patients with elevated
serum FLC levels after three treatment cycles (P = .006).
However, there was no association between progression-free
survival and elevated UPEP levels after three treatment cycles.
Statis Are Associated With Reduced Mortality
in Multiple Myeloma
(Journal of Clinical Oncology)
The authors conclude that monitoring LCMM patients via
serum samples improves sensitivity and prognostication
compared with urine-based monitoring.
Ixazomib and Dexamethasone in Patients with Relapsed
Multiple Myeloma Not Refractory to Bortezomib
(Blood October 2016)
The authors of this phase II randomized trial sought
to determine the efficacy and toxicity of ixazomib in
combination with dexamethasone in relapsed myeloma.
Patients were randomly assigned to receive either 4 mg or
5.5 mg of ixazomib in combination with 40 mg
dexamethasone. In total, 43% of patients achieved confirmed
partial response or better; 31% were responsive in the 4-mg
group, and 54% were responsive in the 5.5-mg group.
The authors conclude that ixazomib with dexamethasone
has good efficacy in relapsed myeloma and is generally welltolerated. Notably, both response rate and toxicity are higher
at the 5.5 mg dose.
Selinexor Shows Promise in Heavily Pretreated Myeloma
Keith Stewart MD Mayo Clinic
Selinexor (KPT-330) demonstrated promising clinical activity
in patients with heavily pretreated multiple myeloma,
according to Karyopharm Therapeutics, the manufacturer of
the selective inhibitor of nuclear export.
20 MyeNews Summer 2016
This retrospective cohort study identified 4957 patients
diagnosed with multiple myeloma (MM) from the Veterans
Administration Central Cancer Registry, of whom 2294
received statin therapy (medications used to treat high
cholesterol). The use of statins was associated with significant
decreases in all-cause (21%) and MM-specific (24%) mortality.
A 31% decreased risk of skeletal-related events was observed.
This study suggests potential benefits of statin therapy which
warrant further investigation in prospective studies.
Association of Minimal Residual Disease With Superior
Survival Outcomes in Patients With Multiple Myeloma
(Oncology October 2016)
This meta-analysis included 21 studies reporting minimal
residual disease (MRD) status and progression-free survival
(PFS) or overall survival (OS) in 20 or more patients with
multiple myeloma following treatment. Patients with
complete responses or MRD-negative status had significantly
improved PFS and OS.
These findings support the inclusion of MRD as an endpoint
in clinical trials of patients with multiple myeloma.
Safety and Efficacy of Lenalidomide Combined
with Low-Dose Cyclophosphamide and Prednisone
in Lenalidomide-Refractory Multiple Myeloma
(Oncology October 2016)
This phase I/II study included 67 patients with lenalidomiderefractory multiple myeloma and was conducted to evaluate
the safety and efficacy of the combination of lenalidomide
with low-dose cyclophosphamide and prednisone. The
overall response rate was 67% at the maximum tolerated
dose, which was 25 mg lenalidomide (days 1–21/28 days), 50
mg/day cyclophosphamide, and 20 mg/day prednisone. The
median OS and PFS were 29 and 12.1 months.
Overall Survival of Patients with Relapsed Multiple
Myeloma Treated With Panobinostat or Placebo Plus
Bortezomib and Dexamethasone
(The Lancet, Haematology)
of patients achieving MRD-negative status even in the
relapsed/refractory setting.
This was a final overall survival analysis of a randomized,
placebo-controlled, double-blind, prospective multicenter
phase III study comparing panobinostat vs placebo in
combination with bortezomib and dexamethasone in 768
patients with relapsed, refractory multiple myeloma (rrMM).
Median overall survival in the treatment and placebo groups
was 40.3 vs 35.8 months, respectively.
The authors concluded that, while panobinostat offers
a progression free survival benefit in combination with
bortezomib and dexamethasone, no clear overall survival
benefit was observed, warranting further study to optimize
this regimen.
Summary from American Society of Clinical Oncology
2016 Annual Meeting November 2016
by Shaji Kumar MD, Mayo Clinic
The data presented at ASCO 2016 clearly demonstrate
continued improvement in the therapeutic options for
patients with MM. The introduction of immune therapies,
particularly monoclonal antibodies, has been an area of great
interest. The phase III trial of daratumumab in combination
with bortezomib and dexamethasone showed significant
efficacy, with very high response rates and a high proportion
Also of great interest is the combination of the checkpoint
inhibitor pembrolizumab with lenalidomide and
dexamethasone. Although KEYNOTE-023 was only a phase
I trial, the high response rate in lenalidomide-refractory
patients was quite striking and again highlights the fact that
immune approaches can potentially overcome common
resistance mechanisms to current classes of therapies, such
as proteasome inhibitors and immunomodulatory drugs.
In addition to the new drugs that are increasingly changing
the paradigm of therapy in MM, other studies addressed
important questions about how existing treatments should
be used. The meta analysis of maintenance trials clearly
demonstrated improved OS with lenalidomide maintenance.
Unfortunately, the reduced benefit of maintenance therapy
seen in patients with high risk disease also highlights the
ongoing need for treatment choices for this population.
Finally, results from the EMN02/HO95 trial discussed here
and the Attal and colleagues study presented at ASH 2015
demonstrate that ASCT continues to play an important role
in patients with newly diagnosed MM who are eligible for
this procedure. They also make clear that patients have the
additional option of delaying stem cell transplantation to first
line salvage therapy.
MYELOMA DRUG GUIDE
Drug Class
Proteasome Inhibitors
Immunomodulators
Alkylating Agents
Corticosteroids
Histone Deacetylase Inhibitors
Bisphosphonates
Monoclonal Antibodies
Name
Abbreviations
Brand Name
TGA
Approved
On PBS
Bortezomib
Carfilzomib
Ixazomib
Thalidomide
Lenalidomide
Pomalidomide
Melphalan
Cyclophosphamide
Dexamethasone
Prednisone
Panobinostat
Zoledronic Acid
Pamidronate
Daratumumab
Elotuzumab
btz, bor,V
cz, car, K
I
thal, T
len, R
pom, P
mel, M
CTX, Cy, C
D, d, dex, DXM
pred, P
Velcade
Kyprolis
Ninlaro
Thalomid
Revlimid
Pomalyst
Alkeran
Cytoxan
Decadron
Deltasone
Farydak
Zometa
Aredia
Darzalex
Empliciti
Yes
No
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
No*
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
No
No
zol
pmd
dara
elo, E
Approved by TGA – This drug is it is approved for use in Australia for myeloma
On PBS – This means the drug is subsidised under Australian Pharmaceutical Benefit Scheme under strict guidelines
*Carfilzomib is currently before the PBAC for approval to be subsidised on the PBS
Summer 2016 MyeNews
21
Calendar of Events
Victoria
Event
Date
Location
Time
Organisation
Contact
Mt Eliza Information
and Support Group
Thur Jan 19th
Mount Eliza Community Hall
90-100 Canadian Bay Rd,
Mount Eliza
10am – 12 noon
Myeloma Australia
Nella Combe
[email protected]
0447 334 435
Beaumaris Information
and Support Group
Thur Feb 2nd
Beaumaris Theatre
82 Wells Rd, Beaumaris
10am – 12 noon
Myeloma Australia
Nella Combe
[email protected]
0447 334 435
Gippsland Seminar
Fri Feb 3rd
Gippsland Rotary Centenary House
39 Valley Drive, Traralgon, VIC
1pm – 3pm
Myeloma Australia
Nella Combe
[email protected]
0447 334 435
Kew Information
and Support Group
Thur Feb 9th
Kew Library
Corner Charles St & Cotham Rd,
Kew
10am – 12 noon
Myeloma Australia
Nella Combe
[email protected]
0447 334 435
Geelong Information
and Support Group
Fri Feb 10th
SCC Meeting Room
(Andrew Love Centre)
70 Swanston St, Geelong
10am – 12 noon
Myeloma Australia
Nella Combe
[email protected]
0447 334 435
Holmesglen Seminar
Sat Feb 18th
Cnr Warrigal & Batesford Rds,
Chadstone
10am – 12 noon
Myeloma Australia
Nella Combe
[email protected]
0447 334 435
Younger Persons
Information and Support
Group
Thur Feb 23rd
Myeloma Australia – Head Office
333 Swan Street, Richmond
6pm – 8pm
Myeloma Australia
Nella Combe
[email protected]
0447 334 435
Coburg Information and
Support Group (NEW)
Thur March 2nd
Coburg Library
Corner Victoria and
Louisa Streets, Coburg
10am – 12 noon
Myeloma Australia
Nella Combe
[email protected]
0447 334 435
South Australia
Event
Date
Location
Time
Organisation
Contact
Fullarton Coast
Information
and Support Group
Tues Feb 7th
Fullarton Park Centre
411 Fullarton Rd, Fullarton
10 am – 12 noon
Myeloma Australia
Ian Driver - [email protected]
(08) 8552 6097
1800 MYELOMA (693 566)
South East
Regional Seminar
Fri Feb 10th
Katnook Estate – Coonawarra
(6km north of Penola)
Mid North
Information and
Support Group
Thur Feb 23rd
Snowtown Hospital
Snowtown
12 noon – 2 pm
Myeloma Australia
Bronwyn Gerschwitz
(08) 8664 0682
[email protected]
1800 MYELOMA (693 566)
Fullarton Coast
Information
and Support Group
Tues April 4th
Fullarton Park Centre
411 Fullarton Rd, Fullarton
10 am – 12 noon
Myeloma Australia
Ian Driver - [email protected]
(08) 8552 6097
1800 MYELOMA (693 566)
11.30 am – 2.30 pm Myeloma Australia
Carol Koch
(08) 8765 9014
1800 MYELOMA (693 566)
Myeloma Support Groups Facilitated by Leukaemia Foundation
State
VIC
VIC
NSW
NSW
ACT
WA
22 MyeNews Summer 2016
Location
Preston
Bendigo Group
Artarmon
Wollongong
Canberra
Perth
Group
Haematology Group
Haematology Group
Haematology Group
Haematology Group
Haematology Group
Haematology Group
Time
1st Thursday alternate months of Kew Group
2nd Monday each month
1st Friday monthly (from February)
3rd Wednesday alternate months (from February)
2nd Tuesday monthly (from February)
Monthly meetings (from February)
Calendar of Events
New South Wales
PLEASE NOTE: AT TIME OF PRINTING THERE ARE NO DATES FOR RPAH GROUP.
For further information Contact: Tracy King (02) 8627 1570
[email protected]
Event
Date
Location
Time
Organisation
Contact
Newcastle Information
and Support Group
Mon Feb 6th
Cancer Council Office
Level 1/215 Pacific Highway,
Charlestown
3pm – 5pm
Myeloma Australia
John Miller (02) 4957 0711
[email protected]
1800 MYELOMA (693 566)
Westmead Hospital
Information and
Support Group
Thur Feb 16th
Crown Prince Mary Cancer Care Centre
Conference Room 2
Westmead Public Hospital
Hawkesbury Rd, Westmead
10 am – 12pm
Myeloma Australia
Jacqui Keogh
[email protected]
M: 0426 404 230
Shoalhaven
Information
and Support Group
Mon Feb 13th
Bomaderry Bowling Club
Blue Gum Room (1st floor)
154 Meroo Rd, Bomaderry
10 am – 12 pm
Myeloma Australia
Brian Law (02) 4423 4205 / 0411 773 579
[email protected]
1800 MYELOMA (693 566)
Central Coast
Information
and Support Group
Thur Feb 23rd
Central Coast Leagues Club
Dane Drive, Gosford
6 – 8pm
Gosford Hospital &
Myeloma Australia
Jacqui Jagger (02) 4320 9641
[email protected]
1800 MYELOMA (693 566)
Shoalhaven
Information
and Support Group
Mon March 13th
Bomaderry Bowling Club
Blue Gum Room (1st floor)
154 Meroo Rd, Bomaderry
10am – 12pm
Myeloma Australia
Brian Law (02) 4423 4205 / 0411 773 579
[email protected]
1800 MYELOMA (693 566)
Central Coast
Movie Night
Thur March 23rd
Avoca Beach Picture Theatre
69 Avoca Drive, Avoca Beach
TBC
Myeloma Australia
Jacqui Jagger (02) 4320 9641
[email protected]
1800 MYELOMA (693 566)
Newcastle Information
and Support Group
Mon April 3rd
Cancer Council Office
Level 1/215 Pacific Highway,
Charlestown
3 – 5 pm
Myeloma Australia
John Miller (02) 4957 0711
[email protected]
1800 MYELOMA (693 566)
Shoalhaven
Information
and Support Group
Mon April 10th
Bomaderry Bowling Club
Blue Gum Room (1st floor)
154 Meroo Rd, Bomaderry
10am – 12pm
Myeloma Australia
Brian Law (02) 4423 4205 / 0411 773 579
[email protected]
1800 MYELOMA (693 566)
Westmead Hospital
Information and
Support Group
Crown Prince Mary Cancer Care Centre
Conference Room 2
Thurs April 20th
Westmead Public Hospital
Hawkesbury Rd, Westmead
10am – 12pm
Myeloma Australia
Jacqui Keogh
[email protected]
M: 0426 404 230
Central Coast
Information
and Support Group
Thur April 27th
6 – 8pm
Gosford Hospital &
Myeloma Australia
Jacqui Jagger (02) 4320 9641
[email protected]
1800 MYELOMA (693 566)
Central Coast Leagues Club
Dane Drive, Gosford
Brisbane - Informal Group
Contact Helen Parsons
e: [email protected]
m: 0415 106 092
National Telephone Support Group (Cancer Council NSW)
Event
Date
Telephone Support
2nd & 4th Monday
every month
Available to those with myeloma
Time
Organisation
Contact
1.30pm -2.30pm
(AEST)
Cancer Council NSW
with MFA NSW
Cancer Council NSW
1300 755 632
E: [email protected]
DATES AND EVENTS ARE SUBJECT TO CHANGE AT SHORT NOTICE.
For a more accurate events calendar please go to http://myeloma.org.au/events/
Summer 2016 MyeNews
23
MyeNews is supported by an unrestricted educational grant from Celgene
Myeloma Support Nurse
Jacqui Keogh - NSW
Nella Combe – VIC
Jo Gardiner – SA
Freecall: 1800 693 566
(1800MYELOMA)
Office Hours:
9am – 5pm
Monday to Friday
Head Office:
333 Swan Street
Richmond, VIC 3121
9.00am – 5.00pm Mon-Fri
T 1300 632 100 (toll free)
T (03) 9428 7444
[email protected]
www.myeloma.org.au
Post:
PO Box 5017
BURNLEY, VIC, 3121
Myeloma Foundation of Australia Inc. ARBN 126 035 247 ABN 30 476 390 368
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.