MyeNews Spring 2018 Issue no 47 - Myeloma Australia
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MyeNews
President’s Report
Spring 2018 Issue no 47
Contents
President’s Report
In this issue
From the President 3
Profile – Geo Sobrio 4
Profile – Sam Zeps & Jacqueline Tate 5
Information and Support Group Initiative 6
Exercise as Medicine 7
News from the Myeloma and
Related Diseases Registry 9
My Myeloma Journey 10
Telephone Support Feedback Project 10
Fundraising 12
What’s Happening – Fundraising 13
From the Nurse Manager 14
What’s Happening – New South Wales 15
What’s Happening – South Australia 16
What’s Happening – Victoria 17
What’s Happening – Western Australia 18
Medical Corner 19
Calendar of Events 21
MyeNews – Contact Information and Submissions
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the place of medical care or the advice of a doctor. Your doctor should always be consulted regarding diagnosis and treatment. No part of
this newsletter may be reproduced in any form without the prior written permission from The Myeloma Foundation of Australia Inc.
Myeloma Foundation of Australia Inc. ARBN 126 035 247 ABN 30 476 390 368
2 MyeNews | www.myeloma.org.au
From the President
It is hard to believe that Myeloma Australia will Myeloma Australia has
celebrate its 20th birthday this year. It does not decided to celebrate our
birthday by introducing
seem that long ago that I met with Robert and
awards to those volunteers
Glenys Moran, the Brown family, Pat Dobson who have helped make this
of the Cancer Council Victoria, Professor Miles all possible. This year we are
Prince and Associate Professor Paul Mitchell at making our first batch of
the offices of the Cancer Council with the idea volunteer recognitions and
of starting a myeloma support organisation in each year going forward we
will recognise those people
August 1998.
who have made a volunteer
contribution to myeloma
In May 1999 Myeloma Victoria was incorporated and the patients in Australia. We
committee included Robert and Glenys, Pat Dobson, Leanne have three levels of awards with the first two groups being
Lambert, a social worker and myself. Prof. Prince and A/Prof presented at events in their capital cities and the top awards
Mitchell were permanent advisors to our board. will be presented at the 2nd National Myeloma Scientific
We met every couple of months and our first big event was Workshop in September. Award recipients will be notified
a patient seminar in April 1999 at the Crest Hotel in St Kilda. soon and all the awardees will be in the next edition of
We had about 250 people attend the day listening MyeNews.
to presentations on all aspects of myeloma given by The National Myeloma Scientific Workshop that we are
Professors Doug Joshua, Miles Prince, Jeff Szer and Associate holding in September is held every second year and we invite
Professor Paul Mitchell. This event far exceeded our researchers from Australia and New Zealand to present their
expectations and gave us the incentive to keep building our work to their peers. Also, we have invited three international
organisation as we saw the real need in the community for haematologists who will speak on their research.
support and education.
With the growth of Myeloma Australia our need for funding
In early 2000 we employed our first Myeloma Support Nurse increases and I thank the all our corporate supporters for
and started the 1800 telephone support service which is still their generous support. I would also like to thank those
going strongly today. members of the myeloma community who have held fund
In about 2002 Professor Doug Joshua chaired a meeting of a raising events, run or walked in the many fun runs or those
number of groups with an interest in myeloma from all over who have just donated, your money is necessary for us to
Australia to discuss the forming of an Australian organisation. maintain and grow the level of service we are supplying.
After this meeting we joined with a group based in Liverpool, We are still a very small organisation with one full time staff
Sydney run by Shaun and Linda Raby and one from Adelaide member in Steve our CEO and six part time staff assisting
run by Ian Driver, to start Myeloma Australia (Myeloma with fundraising and administration. I would like to thank
Foundation of Australia Inc.) Steve as it has been under his guidance that we have really
Our next step was to employ a Myeloma Support Nurse grown always along the directions set by the original
in both Adelaide and Sydney. Over the following years we Myeloma Victoria Board. Boy have we come a long way in
formed a number of support groups and ran a number of twenty years!
patient seminars both in the capital cities as well as in the I would like to add a personal comment as this year marks
country centres. my wife Roslyn’s 22nd year since diagnosis with myeloma
At long last we are now a truly national organisation and 21st year since a stem cell transplant and this year we
with Myeloma Support Nurses based in Perth, Adelaide, celebrate our 50th wedding anniversary. This is something
Melbourne, Sydney, Brisbane and shortly in Newcastle and we never expected to reach and we make sure that we do
Tasmania as planning progresses. The Northern Territory not take anything for granted.
is covered from Adelaide and Canberra is covered from Keep hanging in there as there are new drugs being
Sydney. Tasmania will soon have a Myeloma Australia nurse developed and hopefully we will see in our lifetime myeloma
though presently this is covered from Melbourne. From the
being classified as a chronic disease and hopefully a cure.
very beginning we decided that we would be a nurse based
organisation with all of our services run by qualified myeloma
nurses. We are the only organisation in the world providing
an entirely myeloma nurse based support service to the
myeloma community and all of our nurses are among the Brian Rosengarten
most knowledgeable myeloma nurses in Australia. One of the President
many services they provide is to visit hospitals and present Myeloma Australia
myeloma education for the nurses.
Support Line 1800 693 566 | MyeNews 3
Profile
Geo Sobrio I became a clinical trials coordinator at Royal Prince Alfred
Hospital where I was involved in the POLLUX study and the
very promising CAR T Cell therapy. It was my first out-of-
the-ward job setting and I really enjoyed the variety. A few
months after that, I took a temporary role at the Australian
Red Cross Blood Service. I was a Clinical Nurse Advisor in the
management of IVIGs and coordinator for the HLA matched
platelets. It was only there that I realized how much IVIGs are
needed for the entire NSW community and the tremendous
helpfulness of the organization. I was very impressed how I
grew with them and became a clinical resource for complex
cases. I then decided to study nursing leadership for my next
career adventure.
It was at the beginning of winter when I joined the team at
Myeloma Australia. I instantly enjoyed my new role because
of its flexibility and the opportunities to learn deeper, and the
gift of more time to listen to patients’ stories as they go on
their journey with myeloma. Ever since my first attendance
at a support group meeting, I was inspired to reach out to
patients and more importantly their carers. I have always
been very passionate about empowering my patients and
this has been the core of my nursing life.
My background in nursing started in 2006. After I finished
I will be working every Thursday and Friday each week in our
my degree at my hometown in the Philippines, I was rotated newly opened office in Parramatta. On my other days of the
to multiple areas in paediatrics, emergency, and surgery week, I run a private chemo clinic for solid tumours (medical
but ended up in complex medical unit and stayed there for oncology) and do one day on the weekend at my old haem
5 years. Not long after, I was enjoying my first Australian ward or in ED at the public in Liverpool.
summer in 2012 in the quiet and beautiful town of Bendigo.
There, I did a bridging program to get me used to the Even though I am very busy, I always find myself strolling
Australian health care system and learn the culture of course. and surfing along the beautiful sands in the south coast or at
Then few weeks later, I landed a job in Sydney and eventually, the edges of the cliffs of the blue mountains. Over the next
Photo supplied and used with permission
I called Liverpool my second home. few months, I will be in Adelaide, the Yarra Valley in Victoria
and then Brisbane to attend conferences and to meet the
It was only when I became a haematology nurse in the myeloma nursing community. It’s going to be great to get
inpatient ward of Liverpool Hospital that I learnt so much around the country to learn more about myeloma and meet
about blood cancers and myeloma. Looking after patients members of the myeloma community.
during intensive chemotherapy and bone marrow transplant
requires specialty knowledge so I did post grad study in Regards,
stem cell transplantation and it opened the door to more Geo Sobrio
specialized haematology roles. Myeloma Support Nurse, NSW
The Myeloma Muster
The Myeloma Muster is your monthly
round up of news from Myeloma Australia.
Filled with the latest information on what’s what in the myeloma community, from
fundraisers across the country, latest medical information, updates on Support Groups
and much more. If you would like to be added to the list for this email only newsletter,
please contact us at support@myeloma.org.au or on P: (03) 9428 7444.
4 MyeNews | www.myeloma.org.au
Profiles
Sam Zeps Apart from my family and my work in cancer, my other great
passion is triathlon, which has become an integral part
of my life over the past four years. Working up from short
distance to long distance events, it is the longer courses i.e.
half ironman and ironman distances that are my favourite.
I am currently training for the Busselton half ironman in
December with the hopes to do my second full ironman in
Port Macquarie next year if my knee holds up, having had
surgery on it earlier this year. I remain forever hopeful that I
Photo © Pina Civitarese
can continue where I left off as I can’t imagine this sport not
being a part of my life.
Sam Zeps
Support Services
Jacqueline Tate
Just over a year ago now I moved with part of my family from
Perth to Melbourne because of a job opportunity for my
husband, Nik. When I say part of my family, that’s because I
have two step-children (Zen, 21 and Aisha 19), as well as two
children of my own (Daniella 8 and Kira 6) and the eldest
couldn’t join us due to university commitments in other
states. So, our move to the east has significantly affected our
family in many ways. Not only have we been separated from
one another, but I also had to leave my mother and lifelong
friends, and of course the warmer climate of the sunny west.
However, with this change has come many fantastic and
positive life changing opportunities for us all.
Over the last year my focus was settling our daughters into
their new school and extracurricular activities. Now, feeling
very settled in our new home, I am very happy to be back
Hello! My name is Jacqueline. I love my role at Myeloma
in the work force and particularly with the opportunity to
Australia as Project Manager and Liaison with the wildly
enter a new field of work. Over the last 12 years I worked as
talented group of clinicians and scientists we call the MSAG
a laboratory based graduate research assistant working in
(Medical and Scientific Advisory Group). Before joining
cancer research; from prostate cancer in my honours year
Myeloma Australia, I worked as a scientist investigating
to leukaemia’s in subsequent years at the Telethon Institute
deafness, cell transplantation and the cochlear implant,
for Child Health Research and at the University of Western
also working abroad in cancer bioscience and clinical trials.
Australia. While I enjoyed the laboratory research, I knew
Outside Myeloma Australia I am a passionate advocate for
that this was something I no longer wanted to do and that
equal access to STEM (Science Technology Engineering and
there were other components to cancer care I wanted to
Maths), and a volunteer with organisations like Tech Girls are
explore and be a part of. I am therefore very excited to have
Superheroes. This year I was honoured to be a Future Makers
secured a position at Myeloma Australia as I’m now gaining
Fellow through CSL Australia and named as a finalist for STEM
experience and insight into another integral part of cancer
ambassador to parliament. Right now, I am most excited
care; the provision of personal support to those with cancer.
about the upcoming National Myeloma Scientific Workshop.
While not dealing with patients directly I am delighted to be
We run this event so that clinicians and scientists from
Photo supplied and used with permission
able to assist those that do, through the various tasks that
around the world can share their knowledge. I also have a
are being assigned to me. My hope is that my experience in
young family that loves adventure. On our most recent trip to
research will bring additional skills to the organisation and
Mt Buller the kids went from snowballs to independent skiing
contribute to its growth and development. In the short time
in two days flat! We are pictured here snorkeling in Northern
I have been at Myeloma Australia I have already acquired a
greater appreciation of the needs and services required by Queensland.
people with myeloma, as well as their family and carers, and Jacqueline Tate
I’m honoured to have been given the opportunity to be a Project Manager and Liaison
part of this important organisation. Medical and Scientific Advisory Group
Support Line 1800 693 566 | MyeNews 5
Information and Support Group Initiative
“This is a very special gift
For a very special person.
The reason, it’s so special is,
It’s just for you from us.
Whenever you are lonely,
Or ever feeling Blue,
You only have to hold this gift
And know we think of you”.
Members of the Beaumaris
Myeloma Information and Suapport Group
The Beaumaris Information and Support Group
have been giving very special gifts to the myeloma
community for years. Driven by member Jan Watt,
these gifts are carefully considered, fundraised and
shared to brighten someone’s day.
A successful application to Melbourne’s bayside city
council around 7 years ago, awarded the Beaumaris group
a grant to set up an office. This grant allowed the group
to purchase office items and supported their proposed
fund-raising endeavours. The generosity and kindness of
the members and the local community, including local
businesses, lead to a successful raffle. Prizes were both
donated and handmade.
Following a generous donation to Myeloma Australia, the
group had some money left over. A long discussion on
what to do with the extra money lead to an idea to create a
‘Welcome Pack’ for people living with myeloma. These packs
were filled with small gifts to help patients on admission
or at the time of a stem cell transplant. Receiving positive
feedback, the raffle and welcome packs have become an
annual project. The Beaumaris
Support Group raffle
The latest version of the welcome packs contain a note book will be drawn again at their
and pens to pass the time. Ear plugs for a decent sleep. Hand October meeting, with special mention
sanitizer, antiseptic cream, dove soap and hand cream to to the following fantastic top prizes; a handmade
keep the bugs away. Tissues and jellybeans for the ups and table by Ian Crothers created at Bayside Men’s Shed using
downs. Lastly a Myeloma Australia support group meeting only recycled timber, a cot quilt handmade by Jan, bottles of
Photos supplied and used with permission
schedule and the above poem. To quote Jan ‘it is not so much wine from a member’s winery and many gift cards.”
what is in the packs but the knowledge that they are not
alone and someone cares.’ Did something help you or someone close to you through a
transplant? I’d love it hear about it. Send your tips through to
It is a team effort and once the packs are created, they are elli.foley@myeloma.org.au .
delivered and given out by the transplant coordinator at a
Melbourne hospital to those in need of support. Ten very Elli Foley
special ‘Welcome Packs’ are shared every four months or so Myeloma Support Nurse
with continued appreciation from the recipients. Victoria
6 MyeNews | www.myeloma.org.au
Exercise as Medicine
Exercise as Medicine! This seems like quite recommend that for good health we exercise at a moderate
a bold statement and probably one that intensity for 150-300 minutes (ie: swimming, walking, light
cycling) or 75-150 minutes at a vigorous intensity (fast paced
you have not heard often, especially as
jogging or fast cycling), plus two to three resistance training
myeloma patients. However, the evidence is sessions per week. These numbers can be quite challenging
now overwhelming. Everyday there is more to meet; therefore, it is important to remember any exercise
and more reporting of clinical and scientific is better than none and that it’s ok to start off slowly,
research supporting this type of medicine and increasing the time spent exercising gradually each week.
the importance of it being prescribed, together COSA recommends that all people with cancer avoid
with traditional treatments, as normal standard inactivity and return to normal daily activities as soon as
practice in oncology care. possible following diagnosis. They suggest that all people
with cancer should progress towards and, once achieved,
maintain participation in at least 150 minutes of moderate
The Clinical Oncology Society of Australia (COSA) recently
intensity or 75 minutes of vigorous-intensity aerobic activity;
released a position statement recommending that exercise
and two to three resistance exercise (i.e. lifting weights)
be embedded as part of standard practice in cancer care with
sessions each week targeting all major muscle groups.
evidence supporting exercise as helping to counteract the
adverse effects of cancer and its treatment. So why are so few achieving these guidelines? Barriers to
exercising have been reported as fatigue, pain, nausea, cost,
Assoc. Professor Prue Cormie, one of the leading authors lack of knowledge, time and confidence, no interest in, or
of the COSA position statement, stated on a recent friend to exercise with, as well as other health conditions.
episode of Insight (SBS) “If the benefits of exercise were Myeloma patients also get to add bone pain, cancer
encapsulated into a pill, this pill would be demanded by related fatigue, muscle wasting and serious neurological
every patient, prescribed by every doctor and subsidised by complications such as cranial and spinal nerve compression
the government.” It is easy to imagine that this would be an as consequences of their extensive treatment protocols to
extremely popular pill and one that people would readily this list.
accept into their medicine cabinet.
Patients with bone lesions have traditionally been advised to
It’s known that regular ongoing exercise through all stages avoid high intensity aerobic exercise, resistance training and
of the treatment process has been shown to improve impact training, however, recent research into various patient
aerobic capacity, increase muscle mass and strength, slow populations with bone metastases has established that a rest
or prevent bone mineral density loss, increase quality of life, strategy only hastened decline and reduced survival rates. It
reduce fatigue and aid recovery. However, only one in five has now been determined that resistance training and aerobic
people diagnosed with cancer are meeting national physical exercise programs that are specifically designed to avoid
activity guidelines. The Australian Physical Activity guidelines loading potentially fragile sites are both safe and effective.
Photos supplied and used with permission
WA Myeloma Association members Paul Sims and Chris Windsor working hard at the Curtin University Health & Wellness clinic, following the advice of their
referring Haematologist Dr Brad Augustson to use exercise as medicine.
Support Line 1800 693 566 | MyeNews 7
Photos supplied and used with permission
It’s easy to understand why patients become confused as
to when they should start exercising, what type of activity
they should be undertaking, and at what intensity. Achieving
the recommended guidelines can also seem somewhat
overwhelming especially when you are undertaking
strenuous treatment protocols and struggling to complete
basic daily activities. It is important to remember that starting
slowly and doing any exercise is better than none. Similarly,
exercising in a supportive environment with appropriately
trained supervision can help ensure that you avoid serious
complications and/or injuries.
Included in the recent position statement by COSA was the
recommendation that patients be referred to an accredited
exercise physiologist (AEP) and/or a physiotherapist with
experience in cancer care in order for them to receive the
best care possible. An AEP is an allied health professional
who specialises in the benefits of exercise to help patients
with a chronic disease, such as cancer, achieve good health.
These health professionals are trained to understand the
need for exercise to be individualised to each person’s
abilities, experience and health status, and are able to adapt
an exercise program to cater for the different stages of cancer
diagnosis and treatment related side effects.
Patients are able to contact Exercise Sports Science Australia
(ESSA) in order to help locate an Accredited Exercise
Physiologist experienced in cancer care. ESSA can be
contacted via:
• phone: 07 3171 3335,
• email: info@essa.org.au
or by logging onto the website and searching for an
AEP in the required area using the below address
• https://www.essa.org.au/find-aep/
• https://www.cosa.org.au http://exerciseright.com.au
By Debbie Cooper
Exercise physiologist
8 MyeNews | www.myeloma.org.au
NEWS FROM
NEWS FROMTHE
THEMYELOMA
MYELOMAANDAND
RELATED DISEASES
RELATED DISEASESREGISTRY
REGISTRY
MRDR RECRUITMENT
As of August 2018, close to 2300 patients Hospitals in New Zealand; private practices Hospital on board soon completing MRDR
MRDR RECRUITMENT
have been registered on the MRDR. Thank at Adelaide Cancer Centre and Jarrett St representation in all states and territories in
As you to all participants
of August to 2300 patients Specialist
and participating
2018, close Centre,
Hospitals in Gosford; and Lismore
New Zealand; Australia. WeHospital
private practices are certainly in the midst
on board soonofcompleting M
hospitals
have been for your support.
registered TheMRDR.
on the number Thank
of Hospital in NSW. Our
at Adelaide coverage
Cancer Centre and JarrettaSt
in New growth spurt! This is fantastic;
representation thanks
in all for and territo
states
hospital / clinic sites continues to increase Zealand has grown considerably and all your efforts at contributing sites and for
you to all participants and participating Specialist Centre, Gosford; and Lismore Australia. We are certainly in the mids
with 34 approved sites on board, and greater representation in Queensland the growing interest in the registry. As the
hospitals for your support. The number
29 sites actively participating. Sites to of Hospital in NSW. Our coverage
will be possible when Royal Brisbane in Newregistry growsa growth
so has ourspurt!
teamThisin theisphoto
fantastic; than
hospital / clinic sites continues to
recently obtain approval to participateincrease Zealand has grown considerably
and Women’s Hospital start recruitment. and below. all your efforts at contributing sites an
with 34Dunedin,
are: approved sites onand
Wellington, board, and
Whangarei greater
We also hoperepresentation in Queensland
to have Royal Darwin the growing interest in the registry. A
29 sites actively participating. Sites to will be possible when Royal Brisbane registry grows so has our team in the
L-R: Elizabeth Moore,
recently obtain approval to participate and Women’s Hospital start recruitment. below.Erica Wood, Laura Sellick,
are: Dunedin, Wellington, and Whangarei We also hope to have Royal Darwin Cameron Wellard,
Krystal Bergin, Neil Waters,
L-R: Elizabeth
Zoe McQuilten, Naomi Aoki, Moore
Samantha Francis-Pester,
Erica Wood, Laura S
Andrew Spencer.
Cameron Wellard,
Krystal Bergin, Neil W
Zoe McQuilten, Nao
Samantha Francis-P
MYELOMA 1000 PROJECT The Myeloma 1000 project involves will describe immunoglobulin use in Andrew Spencer.
multiple
collection of one blood sample from myeloma in Australia, including variation
Recruitment to the Myeloma 1000 project,
1000 newly diagnosed patients with in practice, cost and patient outcomes.
a blood biobank substudy of the registry,
multiple myeloma before treatment has Results will inform policy and clinical
has reached over 250 patients (see graph).
commenced, and 1000 with MGUS. The practice related to immunoglobulin therapy
Thanks to participating sites and patients
project
Theaims to establish a repository of in these patients.
MYELOMA 1000 PROJECT
for your collaboration. We have a couple of Myeloma 1000 project involves
blood specimens that will be available
will describe immunoglobulin use in m
new sites with Princess Alexandra Hospital collection of one blood sample from myeloma in Australia, including variat
Recruitment to the Myeloma 1000 project, for analysis and future assessment of
in Brisbane and Canberra Hospital joining MRDR: HOW CANcost YOUand BEpatient outcome
1000 newly diagnosed
circulating biomarkers that may better patients with in practice,
a blood biobank substudy of the registry,
recently; these are the first interstate sites, multiple myeloma before treatment hasINVOLVED? Results will inform policy and clinical
hasandreached over that
it is pleasing 250times
patients (see graph). predict treatment response, and individuals
to specimen
commenced,
at risk of developing and 1000orwith MGUS. The
myeloma practice
Ask your treating related
specialist to immunoglobulin
if your hospital th
Thanks to participating
reception sitesbeen
in Melbourne have and within
patients accelerated disease progression.
project aims to establish a repository of in these
contributes data to thepatients.
MRDR and if you
for the required
your range.
collaboration. We have a couple of
blood specimens that will be available are eligible to participate. You will receive a
new sites with Princess Alexandra Hospital
IMPROVE
for analysis and future assessment of patient information sheet about the registry
STUDY
in Brisbane and Canberra Hospital joining
circulatingstudybiomarkers that may
MRDR: HOW CAN YOU BE
including how to opt off if you change your
The IMPROVE (Immunoglobulins in bettermind.
recently; these are the first interstate sites,
predict
myeloma treatment
patients: researchresponse, and individuals
into outcomes, INVOLVED?
and it is pleasing that times to specimen variation in practice and epidemiology)
at risk of developing myeloma or Ask your treating specialist if your ho
reception in Melbourne have been within is a registry-based study funded
accelerated disease by the
progression.
TO CONTACT THE MRDR:
contributes data to the MRDR and if
the required range. National Blood Authority through to 2020. Phone: 1800 811 326
Blood cancers, including multiple myeloma
are eligible to participate. You will rec
Email: sphpm-myeloma@monash.edu
patient information sheet about the re
IMPROVE STUDY
are one of the most common indications Website: mrdr.net.au
including how to opt off if you chang
for immunoglobulin (Ig) use in Australia;
The IMPROVE
this practice studyand
is quite costly (Immunoglobulins
Ig use is in mind.
Myeloma 1000 project participant accrual
myeloma
increasing with patients:
a lot of research
variation in into
practice outcomes,
variation
and limited in practice
oversight. and epidemiology)
The IMPROVE study
is a registry-based study funded by the TO CONTACT THE MRDR:
National Blood Authority through to 2020. Phone: 1800 811 326
Blood cancers, including multiple myeloma Email: sphpm-myeloma@monas
are one of the most common indications Website: mrdr.net.au
for immunoglobulin (Ig) use in Australia;
this practice is quite costly and Ig use is
Myeloma 1000 project participant accrual increasing with a lot of variation in practice
CRICOS Provider: Monash University 00008C. TRSU417824
and limited oversight. The IMPROVE study
Support Line 1800 693 566 | MyeNews 9
President’s
My Myeloma Report
Journey
Michelle, a Myeloma Australia member in South of those who do. Insights like this are so valuable, for
Australia, wrote some prose in response to one empathetic support for each other and to those of us
who try to provide support.
of those feeling down days and posted it on a
Facebook support page. She says “I really am Reading this will likely resonate with many people, the
OK. Sometimes I get a bit down in the mouth response on Facebook has been impressive. Therefore,
we wanted to share her words more widely with the hope
(and write something like this), but then I pick
to normalise these feelings but also as an opportunity to
up pretty quickly afterwards.
Photo supplied and used with permission
remind everyone that there is help out there should these
down days become more frequent.
I sometimes feel guilty about having ‘down’ times, because
compared to a lot of others, I’ve got it pretty cruisy at the We wish to highlight the fact that it’s ok to have days like
moment. I guess it’s the unknown that gets to me, and I have these, but not every day. If you think a friendly chat would
to keep telling myself to live in the present and not worry help getting out of these down days, why not call the
about what’s coming up, because, really, no one ever knows Support Line for a listening ear from one of our nurses?
that do they (smiley face)”. 1800 693 566 Monday – Friday, 9am – 5pm AEST.
As a Myeloma Support Nurse, we aim to give support to We wish to thank Michelle for permission to share her
those affected by myeloma through our expert knowledge thoughts with all our members.
and learned experiences from people and their many
Jo Gardiner
different stories of myeloma. However, we can never really
know what it is like to live each day with this disease. This Senior Specialist Myeloma Nurse
poem beautifully opens a door to the everyday experience SA/NT
Telephone
Support Line
Feedback Project
At Myeloma Australia, we are continuously trying to improve how we support and assist people living with myeloma.
One of our key services is our 1800 toll free Telephone Support Line.
Myeloma Australia is currently evaluating the service we provide with our Telephone Support Line and we will
be inviting callers to participate by providing feedback on your recent call by completing a short survey. Your
participation is voluntary, and all responses are anonymous.
We encourage you to participate to help Myeloma Australia continue to improve this service and ensure its
effectiveness in meeting the needs of the myeloma community.
If you wish further information about this, please call Jo Gardiner, Senior Myeloma Nurse Specialist
and Project Leader on M: 0447 331 165 or email at jo.gardiner@myeloma.org.au
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.
10 MyeNews | www.myeloma.org.auWho is that person in the mirror.
You Look So Well That drawn face. Those black eyes.
That curly flippin’ hair.
“You look so well”. Haunted eyes look back at me.
Hi. Haven’t seen you for so long. Where did all those lines come from?
Heard you’ve been sick. Makeup is now my best friend.
Cancer someone said. Is that true? But gee. You look so well.
It’s been over a year. You must be better now.
You look so well. Been sitting for a while now.
Time to get up.
Keep active. Keep fit. Stay healthy. Feet feel like I’ve walked for days, but its only 10am.
Take the dog for a walk. Hips seized; Knees wont bend; Back hunched over.
Why is this hill so hard. It never used to be. I shuffle like an old lady until I loosen up again.
Pulse 180. Don’t think that’s good. But its ok. Because you look so well.
Stars twinkling in front of my eyes.
Still smile at the person walking past. Sore throat again.
You look so well. That’s the 4th this winter. And we’re only half way through.
So tired of feeling like crap.
Parents getting pretty old now. But I don’t want summer to get here.
They need more and more help. Because heat and I are no longer friends.
I need to go to the doctors; the bank; You look so well.
I’ve run out of milk they say.
So tired, I’ll just rest my eyes at this traffic light. So how much longer will I have.
What? Why are you tooting? Am I one that will last 20 years? Or will I be gone in 5?
Oh the lights going yellow again now. Do we spend all our money making memories now?
Geeze. You look so well. Or will that leave us with nothing if I survive a while?
Certainly can’t fall back on that insurance we thought we had.
So tired, fall to sleep as soon as head hits the pillow. But, oh, you look so well.
But then there’s that dreaded hour.
Without fail, you’re wide awake. What will the next treatment take from me.
And then the mind games begin. My mind?
If you’re lucky you’ll get back to sleep before My ability to drive?
the alarm goes for another day. My ability to walk?
Oh. You’re looking so well. My ability to wipe my own backside?
But that will all be ok. Because,
Its 2am and there’s a little whisper. You look so well.
Mum. I can’t sleep. Can I have a cuddle?
That’s every night for 2 weeks this time. I’m tired all the time. Every bone aches.
How much do they have to suffer? But ask me and I’ll say I’m fine
How can I ease their pain and reassure them? Work to be done; family to look after; house to run.
I can’t because I won’t lie to them. Things don’t stop just ‘cause you’re sick.
I don’t know what’s going to happen either. No one else to pick up the work
You look so well. You look so well.
Hot flushes, night sweats, kilos piling on. Hi. Haven’t seen you for so long.
Oh. Hello menopause. You decided to join the party too. Heard you’ve been sick.
Memory fails; Mind unable to focus on tasks; Cancer someone said. Is that true?
confidence waning. It’s been over a year. You must be better now.
Hey chemo. Anything else you want to take? You look so well.
Wow. You didn’t lose weight during your Well. I’m not.
treatment did you?!
You look so well.
Photo supplied and used with permission
Support Line 1800 693 566 | MyeNews 11Fundraising
Congratulations and well done to all those
who participated in Sydney’s City to Surf on
Sunday 12th August. It was the launch of
‘Team Myeloma’ in NSW with 25 runners. On
top of the successful running events in Perth
and Melbourne, the city2surf is now firmly on
our fundraising calendar.
I ran 14km and felt ok by the end. I finished
well but was feeling I could still run further…
It has been suggested that a marathon may
Team Myeloma
be next on the cards for Jacqui and I who felt
awesome at the end of the run.
There are many more events coming up in
Wants YOU in Sydney!!
NSW, feel free to contact me or one of the
Myeloma Australia team for more information.
Santosh Ojha
NSW Fundraiser
Team Myeloma makes its Sydney debut at the City2Surf event on
Sunday 12th August.
Will you gather some friends and run with us?
A social gathering of the myeloma community will be held following
the event.
Details can be found here: http://city2surf.com.au/
Any questions? Contact: matt.maudlin@myeloma.org.au
Santosh pictured centre with Team Myeloma Santosh with Jacqui Keogh (bottom left) and Team Myeloma
Photos supplied and used with permission
Santosh (far right) with Team Myeloma Jacqui Keogh with Team Myeloma
12 MyeNews | www.myeloma.org.auWhat’s
President’s
Happening
Report
Fundraising Australia practicalities render this impossible. Please do
understand that your awareness and community fundraising
The news from the community engagement and fundraising efforts are enormously appreciated and help us to continue
realm of Myeloma Australia is short and sweet for this edition to expand our nurse led services providing education,
only! But this is not to say that there is a lack of activity on support and advocacy to the myeloma community alongside
these fronts – quite the opposite in fact! our commitment to myeloma research through our Medical
and Scientific Advisory Group (MSAG).
Santosh Ojha is settling nicely into his role as our NSW
Fundraiser; having Sydney’s City2Surf event proved to be the The one awareness and fundraising idea I would like to
ideal opportunity for Santosh to really get into the swing of leave you with is this …. Bunnings BBQ. A few supporters
all things Myeloma Australia. in Perth made mention of such an event, and I wondered
if other people would like to explore with their networks
Team Myeloma debuted in Melbourne at Run Melbourne in the possibility of hosting a Bunnings BBQ (or similar) for
late July with over 70 participants representing the Team. Myeloma Australia. If this is something that interests you
Please keep an eye out for when Team Myeloma will be I would be happy to hear from you!
participating at an event in a city near you!!
And as I sign off, please remember that I am here to help!
There is one upcoming fundraising event that I would I love hearing of your awareness raising and fundraising ideas
particularly like to draw your attention to – this being – however great or small, madcap or sane, please let me hear
the Athens Marathon that will be undertaken by Pana about them and help you to bring them to fruition!
Karageorgiou in honour of his late father, Manny. Pana’s story
can be found here: Kind regards,
https://give.everydayhero.com/au/spartan-run Matt Maudlin,
Community Engagement & Fundraising Manager
As much as I would like to feature each and every fundraising
M: 0407 891 052
activity that occurs in the community on behalf of Myeloma
E: matt.maudlin@myeloma.org.au
Did you know that you can donate to us through your pay? Workplace giving streamlines our financial management of
It’s easy and quick, tax benefits are immediate and there’s no corporate donations and reduces our administration. Ninety
need to organise receipts at the end of June. It even has the nine per cent of all donations reach charities on the Platform,
possibility to double your donation to us! and 70 per cent of the companies match their employee
donations!
We’re listed on the Good2Give workplace giving Platform.
Scroll to the bottom of www.good2give.ngo and see if your You can even fundraise for us if your employer is listed on
employer is one of the 150 companies in the scroll bar. If Good2Give, and channel your donations through workplace
your company isn’t yet on Good2Give, direct your corporate giving, again, potentially doubling your result!
responsibility or payroll teams to www.good2give.ngo and
suggest they request a demo.
Any questions? Please contact Matt at Myeloma Australia:
matt.maudlin@myeloma.org.au
Support Line 1800 693 566 | MyeNews 13From
President’s
the Nurse
Report
Manager
I’m pleased to once again have many exciting things to Jo and Jacqui have been working on a survey to evaluate
report in this edition from the Nurse Manager chair. Nella and our toll-free 1800 MYELOMA (693 566) Support Line. We
I are so proud of the work our Myeloma Support Nurses are would really appreciate your honest feedback so that we can
doing on the ground in their states and know many of you continue to improve this invaluable service. If you utilise the
are seeing the benefits of a nurse in your area. The expansion Support Line you will be asked if you’re happy to receive the
project is far from complete so if we currently don’t have a survey. Participation is completely voluntary and certainly
nurse in your state, there may well be very soon. not a requirement to use the Support Line.
We have now appointed two nurses in Queensland, As a group, the nurses have been working hard to bring to
Tash Clarke and Megan McDowell. They both bring with you both updated and new information.
them a wealth of experience working with people with
We now have fact sheets about thalidomide, lenalidomide,
myeloma across many different settings and will commence
pomalidomide, bortezomib, carfilzomib, ixazomib,
employment soon. They are very keen to start engaging the
daratumumab, venetoclax and steroids available for
community and provide our services to those in QLD. We will
download on the website with associated quick reference
introduce them in the next edition of MyeNews. We are very
cards printed.
much looking forward to welcoming them to the team.
We also have resources to help you know how to ‘live well’
In Western Australia, Kerin and Narelle have moved into a
with myeloma. Speak with our Myeloma Support Nurses on
new office space within the Solaris Cancer Centre in Cottesloe
1800 693 566 if you would like to discuss which resources are
and are really enjoying the extra space and access to other
suitable for you.
like-minded organisations and wellness services within the
building. Stay tuned for their grand plans for WA in 2019. If you would like any of our resources from the website but
don’t have a printer you are most welcome to request a print
In NSW Geo Sobrio has joined Jacqui and Santosh in their
out from head office via support@myeloma.org.au .
new office space and has already hit the ground running…
literally, with all three staff members participating in the Did you know that the flu season can continue past winter
City2Surf fun run in August. You can read more about Geo in into spring? There is still time to get the flu vaccine if you
his profile in this edition of MyeNews. I’m sure you’ll all join haven’t done so already. Not only is it important for people
me in extending a warm welcome to Geo. with myeloma to have the flu vaccine due to having a
compromised immune system but it is also important for
Elli and Laura are now well and truly part of the furniture
family and friends to also be protected against the flu to
in Victoria and are managing to spread themselves far
reduce the risk of passing the virus on.
and wide. They too have grand plans to reach even further
in 2019. We hope that you have managed to get through the winter
unscathed and are now able to see a glimpse of spring on
South Australia have also managed to increase their services
the way.
without any extra staff members with the help of some
motivated local health professionals and our ever-faithful SA Hayley Beer
volunteer committee led by Jo Gardiner.
Myeloma Support Nurse Manager
TREATMENT FACT SHEET
TREATMENT FACT SHEET
SHEET
NT FACT
TREATME
Ixazomib (Ninlaro®
)
Carfilzomib (Kyprolis )
®
e® )
ib (Velcad
Bortezom
for use in What is ixazomib?
When is carfilzomib available al Benefits Like bortezomib (Velcade®) How is ixazomib given?
is carfilzomib? Australia on the Pharmaceutic
and carfilzomib (Kyprolis®),
What known as proteasome
belongs to a group of
drugs known as proteasome ixazomib Ixazomib can be given
for belongs to a group of drugs
Scheme (PBS)? inhibitors. on its own or in combination
ib available
Carfilzomib Ixazomib is the first
l as bortezomib (Velcade®) oral (by mouth) proteasome myeloma treatments. with other
which is the same family of drugs
maceutica
with a the PBS in combination It is usually taken on
bortezom
inhibitors developed, this means inhibitor to be
has been developed to target Carfilzomib is subsidised through a 28 day cycle. days 1, 8 and 15 of
When is ralia on the Phar
has it can be taken at home
and ixazomib (Ninlaro®). Carfilzomib bortezomib. This is thought to for patients whose myeloma being administered as a tablet instead of
to steroid medication, dexamethasone of treatment. in the hospital. Ixazomib is usually continued
a different part of the proteasome potentially cause fewer side
use in Aust (PBS)?
Scheme the PBS for people ed
who are newlysis, itcarfilzomib
make can more effective and returned after already having
one type
as part of a clinical trial in
signs of increasing. until the myeloma is
showing
ib? known as Benefits It is also possible to have carfilzomib doctor can advise when a How does ixazomib
bortezom s to a group of drugs
What is (Velcad as carfilzo
mib is subsidi
at diagno
sed on than bortezomib. effectss on
nt was prescribsubsidised depend if combination with other therapies.
The work?
e®) belong same family Bortezomib if another treatme r of cycles and Proteasomes are large
When is ixazomib available
or transplant clinical trial is appropriate. molecules which are
t of time. does carfilzomib work?
the
Bortezomib inhibitors. It is in diagnosed a later date. The numbe ous stem cell body. They are involved present
in the removal, breakdown in all cells in the
proteasome ib (Ninlaro
®).
be given
at
a plan for
an autolog a certain amoun How , the are present in all cells in the
of damaged proteins
or those that are no and recycling Australia on the Pharmace for use in
(Kyprolis®)
and ixazom there is
whether mib is proving effectiv
e after disease
stage of the Proteasomes
are large molecules which
removal, breakdown and recycling How to tell if carfilzomibsymptoms is working? cell. Proteasome inhibitors longer needed by the Scheme (PBS)? utical Benefits
ib work? during one work by binding to proteasomes
the the bortezo effective at relapse. body. They are involved in the the caused by the temporarily blocking
all cells in that are no longer needed by in the and
bortezom
their
present in recycling mib has been of damaged proteins or those Patients may observe a reduction doctor down unwanted proteins. function, which stops them from breaking The Australian Therapeutic
nt again by binding to proteasomes and improved quality of life. The
How does which are If bortezo Goods Administration
molecules own and se treatme cell. Proteasome inhibitors work myeloma associated with an become toxic, killing This causes proteins approved ixazomib (TGA) have
are large l, breakd by the PBS will subsidi ing stops them from breaking of each treatment cycle to monitor the cell.
to build up and as a safe and effective
blocking their function, which will also order tests at the start
ib is work
has not yet been listed treatment. However,
Proteasomes d in the remova longer needed and temporarily
causes proteins to build up and from patient to patient but generally Myeloma cells multiply more to be subsidised by is
that are no to proteasomes
if bortezom response. These tests may vary
are involve by the Benefits Scheme (PBS). the Pharmaceutical
body. They proteins or those g down unwanted proteins. This
caused
urine testing and occasional
x-rays or quickly than normal
symptoms The doctor toxic, killing the cell.
How to tell
from breakin rely more heavily on healthy cells and
ed by binding on in the include regular blood and/or proteasomes as they
of damag ome inhibitors work n, which stops them up and a reducti quality of
life. become r at a faster rate. Myeloma produce unwanted proteins It may be available via
s to build may observewith an improved cycle to monito than normal healthy cells and bone marrow biopsies. cells are therefore much clinical
clinical trial is an appropriate trials in some states. Ask the doctor
cell. Proteas blocking their functio Patients treatment Myeloma ly multiply more quickly
cells ixazomib than normal more sensitive to if a
causes protein associated the start of each but general produce unwanted proteins cells. option when new treatment
temporarily ed proteins. This and myeloma to patient relyx-rays
moreor heavily on proteasomes as they sensitive to is required.
at
cells are therefore much more effects? Myeloma cells appear
healthy cells order tests may vary from patient
What are the potential side
nal
down unwant killing the cell. s and occasio at a faster rate. Myeloma to be even more dependent
become toxic,
than normal e unwanted protein will also
These tests and/or urine testing carfilzomib than normal cells. They
proteasomes than other
types of cancer cells.
on the actions of How to tell if ixazomib
cells multipl y more quickly as they produc
more sensitiv e to response. blood
even more dependent on the actions of As with all drugs, carfilzomib has many potential side effects.
or
the need of the myeloma This may be due to Patients may observe
is working?
Myeloma proteasomes re much include regularbiopsies. Myeloma cells appear to be to patient and may be mild cells
(paraprotein) they produce. to dispose of the abnormal protein a reduction in the symptoms
heavily on a cells are therefo of cancer cells. This may be
due to can vary considerably from patient to lower the myeloma associated
rely more of bone marrow proteasomes than other types way to reduce side effects is with an improved quality caused by the
rate. Myelom on the actions cells to dispose of the abnormal protein more serious. Often the best on efficacy. As By blocking the function of the proteasome, will also order tests of life. The doctor
at a faster than normal cells. ent to the need of the myeloma do this without compromising at the start
more dependThis may be due dose. It is possible to tomyeloma cells from growing ixazomib prevents the response. These tests of each treatment cycle
bortezomib to be even (paraprotein) they produce. or managed, it is very important and multiplying. may vary from patient to monitor
cells.
cells appear types of cancer of the abnormal protein the side effects can usually be treated include regular blood to patient but generally
Myeloma proteasome, carfilzomib prevents them promptly to the doctor
or nurse. and/or urine testing
than other to dispose By blocking the function of the highlight bone marrow biopsies. and occasional x-rays
proteasomesthe myeloma cells ts myeloma cells from growing
and multiplying. or
the need
of e. mib preven
(paraprotein)
they produc ome, bortezo Heart problems
n of the proteas to cause heart problems or worsen
pre
How is carfilzomib given? intravenous (IV), into the
ying.
g the functio g and multipl Carfilzomib has been found
By blockin a cells from growin patients being treated with
to 30 minute existing heart conditions. Therefore, during treatment. Symptoms
the myelom Carfilzomib is given as an up height and carefully
be calculated on the patient’s carfilzomib will be monitored
given? aneous), vein infusion. The dose will blood pressure, shortness of
breath,
ezomib n under the skin (subcut
if
dose for the first cycle. Then of heart problems include high
weight and will begin as a smaller
How is bort
increased. lower limbs and/or hands.
an injectio an injection into the
vein of concerns, the dose will be chest pain and swelling in the
in there are no major side effects about any history of heart problems
is given as as e when used will be given prior to the It is important to tell the doctor
Bortezomib be given be most effectivas chemotherapy For the first cycle only, IV hydration to report any of the above side
effects
cases it can shown to before starting carfilzomib and
or in some It has been nts such carfilzomib infusion.
a treatme and 16 of a 28 day cycle. immediately once treatment
starts.
(intravenous).with other myelom 35 day Carfilzomib will be given on days 1, 2, 8, 9, 15
or to
combinations. 22 or a 28 of a 28 combination with other medications it
8, 15 and 8 and 11 Carfilzomib is often given in
and steroid on days 1, days 1, 4, until the myeloma shows signs
is often given given on increase the efficacy. It is continued if the side effects of treatment
Bortezomib cases it may be is beginning to become active
again or
some
cycle. In become intolerable.
day cycle.
The information in
this fact sheet is not
the treating team. intended to replace
advice of replace medical care or the
advice of A doctor should always medical care or the
advice of
care or the ment. fact sheet is not intended to
be consulted regarding
ce medical and treat The information in this regarding diagnosis and treatment.
diagnosis and treatment.
ded to repla ding diagnosis the treating team. A doctor
should always be consulted
is not inten lted regar
fact sheet be consu
ation in this d always
The inform team. A doctor shoul
ing
the treat
FACT SHE
ET
TREATMENT FACT SHEET
TREATMENT FACT SHEET Find our Treatment Fact Sheets
TREATMENT
ide (Revli
mid ) ®
Pomalidomide (Pomalyst )
®
Thalidomide (Thalomid®) under the resources tab of our website
Lenalidom
for
When is pomalidomide available
www.myeloma.org.au
What is Pomalidomide? use in Australia on the Pharmaceutical
belongs to a group of
Pomalidomide, also known as Pomalyst®,
drugs called immunomodulatory drugs (IMiD) which
work by Benefits Scheme (PBS)? What is thalidomide?
in is a collection on the PBS for patients where Thalidomide can also be used
able for usemodifying the immune system. The immune system In Australia pomalidomide is subsidised Thalidomide, also known as as maintenance therapy after
the body from infection at least two prior therapies Thalomid®, belongs to a group autologous stem cell transplant.
idomide avail fits
tissues and organs that help to protect their myeloma has progressed through called immunomodulatory drugs of drugs This is a continuous daily dose
Beneof
aceutical
as well as lenalidomide.
When is lenal
(IMiD) which work by modifying help consolidate the effects to
and against disease. and have progressed on bortezomib the immune system. The immune of the transplant.
on the Pharm similar chemical system is a collection of tissues
is a third generation IMiD and has a and organs that help to protect
Australia ?
Pomalidomide
nt such as thalidomide
if pomalidomide is working
the body from infection and against
lidomide? ®, belongs to a groupbyof to other immunomodulatory drugs,
transpla disease. First prescribed in the
Scheme (PBS) us stem cell structure How to tell 1950s for nausea and insomnia When is thalidomide available
What is Lena
is
for an autologowell, lenalidomide and lenalidomide which are also used to treat myeloma. pregnant women, thalidomide in
as Revlimid
also known which work (IMiD) n For people
who are eligible fit and
age of 70 and time of first, or subsequ
ent, Patients may observe a reduction in
the symptoms caused by the
quality of life. The doctor
when it was found to cause
was taken off the market in
the 1960s Australia on the Pharmaceutic for use in
Lenalidomide,
immunomodulat
ory drugs is a collectio
immune systemfrom infection (ASCT), ie.
Under the
PBS at the myeloma associated with an improved can be used to treat diseases
birth defects. Scientists then
discovered it
Scheme (PBS)? al Benefits
How does Pomalidomide work?
treatment cycle to monitor of the immune system such
drugs called immune system. The body through the will also order tests at the start of each as myeloma.
the protect the subsidised lenalidomide patient to patient but generally Thalidomide has a similar chemical structure to
modifying that help to le for ASCT, than conventional response. These tests may vary from other next generation In Australia thalidomide is subsidised
and organs l relapse. ed unsuitab in their disease which Pomalidomide is a more targeted therapy testing and occasional x-rays or immunomodulatory drugs, on the PBS at different stages
of tissues a similar chemica who are consider time and is thought to have several mechanisms
of action include regular blood and/or urine such as lenalidomide and pomalidomide during the course of the disease.
It may be prescribed at diagnosis,
disease. IMiD and has ide For people through the PBS at any or if these patients eligible
werechemotherapy of action
which are also used to treat
myeloma. at relapse or for maintenance
and against generation drugs, such as thalidom ed is for
be that affect myeloma cell survival. However, the mechanism bone marrow biopsies. therapy after an autologous
is a second
modulatory is subsidis time of initial diagnos diagnosis, they will cell transplant. If thalidomide stem
Lenalidomide myeloma. at cannot be tolerated, there are
other immunoare also used to treat can be at the medication is not fully understood.
How does thalidomide work? treatment options available. other
structure to
omide which prescrib ed a different date.
later Pomalidomide is thought to work in the following ways: What are the potential side effects?
and pomalid at a Thalidomide is a more targeted
? lenalidomide ing?
1. Directly killing or stopping the growth
of myeloma cells
As with all drugs, pomalidomide has
many potential side effects. therapy than conventional
lenal idomide work ional
lenal idom ide is work 2.by the the immune response against the myeloma
cells
They can vary considerably from patient
to patient and may be mild chemotherapy and is thought to have several
mechanisms of action
How to tell if thalidomide is
working?
How doesis a more targeted therapy
convent if Boosting is to lower that affect
How to tell a reduction in the
than action s caused to reduce side effects myeloma cell
mechanisms
of symptom messages involved in the or more serious. Often the best way survival. However, the mechanism Patients may observe a reduction
have several mechanism of action life. The doctor
3. Altering the production of chemical compromising on efficacy. Asis not fully understood. of action in the symptoms caused by
Lenalidomide and is thought to observe d quality of the dose. It is possible to do this without myeloma associated with an the
However,
the Patients may with an improve treatment cycle growth and survival of myeloma cells
to monitor managed, it is very important to Thalidomide is thought to work
improved quality of life. The
doctor
chemotherapy cell survival. associated generally supply the side effects can usually be treated or in the following ways: will also order tests at the start
of each treatment cycle to monitor
myeloma myeloma start of each patient but4. Blocking the growth of new blood vessels that or nurse.
that affect tests at the patient to x-rays or highlight them promptly to the doctor 1. Directly killing or stopping response. These tests may vary
from patient to patient but generally
understood. the followin
g ways: will also order tests may vary from occasional myeloma cells with oxygen and nutrition (anti-angiogenesis) the growth of myeloma cells include regular blood and/or
is not fully to work in These testing and 2. Boosting the immune response urine testing and occasional
is thought myeloma
cells response. and/or urine myeloma cells from sticking to the bone marrow. against the myeloma cells bone marrow biopsies. x-rays or
Lenalido mide the growth
of
a cells
blood
include regularbiopsies.
5. Preventing the Birth defects 3. Altering the production
killing or stopping the myelom pomalidomide are educated on growth of chemical messages involved
1. Directly response against in the bone marrow Both men and women who are taking and survival of myeloma cells in the
ts? asked strictly not to reproduce
2. Boosting
the immune
ion of chemica
l message
s involved
tial side effec HowThey is pomalidomide given? the risks to an unborn child and are has a pregnancy 4. Blocking the growth of new What are the potential side
effects?
the poten potential sidebe
effects. The tablets while taking pomalidomide. The manufacturer pomalidomide is
blood vessels that supply the
What are lenalidomide has many comes in tablet form and is taken orally.
the product myeloma cells mild or
myeloma cells with oxygen and As with all drugs, thalidomide
3. Altering survival of supply the and may
Pomalidomide be taken either with prevention programme in place to
ensure that nutrition (anti-angiogenesis) has many potential side effects.
growth and vessels that giogenesis) to patient to lower swallowed whole with water and can
be the taken safely. 5. Preventing the myeloma can vary considerably from patient They
of new blood (anti-an with all drugs, patient effects should
is any time of the day stored, prescribed, handled and cells from sticking to patient and may be
the growth nutrition As ably from side Asfood. Pomalidomide can be taken at to the bone marrow more serious. Often the best mild or
4. Blocking cells with oxygen and the bone marrow. can vary consider way to reduce or without
ising on efficacy. nt to the same time each day.
way to reduce side effects is
Often the best without comprom
to lower the
myeloma sticking to but it is best to take it at approximately dose. It is possible to do this
without
ng the myelom
a cells from more serious. do this
possible to be treated or manage
d, it is very
importa
days followed by a seven-day rest How is thalidomide given? side effects can usually be treated compromising on efficacy. As
5. Preventi dose. It is Pomalidomide usually taken for 21 or managed, it is very important
can usually to the doctor or nurse. Most people will continue this Thalidomide comes in tablet highlight them promptly to to
? side effects which completes the 28-day cycle. form and is taken orally; the the doctor or nurse.
idomide given
promptly response has been achieved or should be swallowed whole tablets
The tablets highlight them regime until it is thought that a deep at least an hour after food. Thalidomide
How is lenal form and is
comes in tabletwith water and can
taken orally. either with
be taken day but s
the myeloma
are educate
d onis showing signs of increasing.
can be taken at any time of the
feel drowsy. It is for this reason
day however it can cause patients
to
Birth defects
time of the lenalidomide Pomalidomide ce is often given in combination with a steroid tablet,
Birth defect
Both men and women who are
Lenalidomide whole taken at any who are taking not to reprodu taken in the evening just before
that it is often recommended
that it be taking thalidomide are educated
swallowed mide can be same time each day. asked strictly a pregnan bed. the risks to an unborn child on
should be Both men
and women
child and are
cy
dexamethasone. and are asked strictly not to
food. Lenalido ately the rest turer has Thalidomide is usually taken while taking thalidomide. The reproduce
or without a seven-day the risks to
an unborn The manufac lenalidomide
is stored, for 21 days followed by a seven manufacturer has a pregnancy
take it at approxim 21 days followed by this lenalidomide.place to ensure that which completes the 28 day day rest prevention programme in place
it is best to taken for will continue or while taking in
cycle. It is commonly given in
combination prescribed, handled to ensure that thalidomide is
usually Most people achieved program me with a chemotherapy tablet and stored,
Lenalidomide es the 28-day cycle. response has been and steroid tablet that are prescribed taken safely.
prevention taken safely. once per week during the 21
handled and day period of the cycle. Most
which completis thought that a deep prescribed, people will
it increasing. tablet, and
continue this regime until it
is thought that a deep response
regime until is showing signs of a steroid achieved or the myeloma is showing signs has been
a tion with
the myelom in combina of increasing.
is often given agents.
Lenalidomide with chemotherapy
also
sometimes
care or the advice of
is not intended to replace medical
The information in this fact sheet and treatment.
always be consulted regarding diagnosis
the treating team. A doctor should
The information in this fact
sheet is not intended to replace
advice of the treating team. A doctor medical care or the advice
care or the should always be consulted of
e medical treatment. regarding diagnosis and treatment.
ed to replac ing diagnosis and
is not intend regard
fact sheet consulted
ation in this r should always be
The inform docto
treati ng team. A
the
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