MyeV ic
Newsletter No 23
September 2005
Published quarterly. MyeVic is the membership newsletter of
Myeloma Victoria: A Division of Myeloma Foundation of Australia Inc
PO Box 2014 Mount Waverley, Victoria 3149 Ph 03 9807 9841
Editor's Report
Myeloma Victoria. More information on page 4 and
see the attached flier.
This year has really flown especially as we are now
We welcome Shaun Raby and the members of
promoting our November workshop. This workshop
Myeloma NSW to the Myeloma Foundation of
has over the past few years become a regular event.
Australia Inc. and invite them to send their stories to
Professor Miles Prince of the Peter MacCallum
be published in future issues. These stories always
Cancer Institute, will give our annual "New Therapies
provide an inspiration to others. Shaun's story is on
Presentation".
page 8.
This has in the past been a very well attended
Now we have finalised Tracy's contact details in
morning and well worth the effort to come. Associate
New South Wales we can provide support four days
Professor Prince is one of the top Australian
a week through our two Myeloma Support Nurses. If
Myeloma specialists. See the attached flier for full
you have any queries no matter how insignificant
details.
give one of them a call.
Starting in October, Kaye Hose, the Victorian
Even
though
Thalidomide
has
been
Myeloma Support Nurse, will be running our second
recommended to be included on the Pharmaceutical
course Living with Myeloma. This is the only
Benefits Scheme in Australia, the distributors are still
specific
cancer
Living
with
Cancer
Education
waiting for final approval by the Government.
Program run in Australia and is fully supported by
Hopefully it will not be too long to wait.
the Cancer Council Victoria. Bookings are essential
Brian Rosengarten
as numbers will be limited, so please contact Kaye
as soon as possible. This is a free program run by
Contacting the Nurses
Contact Details
Melbourne Based Nurse
Sydney Based Nurse
Kaye Hose
Tracy King
Residents of Australia
(other than metropolitan
Melbourne or Sydney)
Kaye Hose
Tracy King
Toll Free Telephone
Toll Free Telephone
Myeloma Support Nurses
1800 444 996
1800 051 532
Whatever your status in the Myeloma community, be
it patient, relative, carer or health professional, here
Residents of Melbourne
or Sydney
is a chance to discuss your myeloma related
problems or queries with either of our two friendly
(cost of a local call)
(cost of a local call)
and experienced support nurses. Both nurses are
(03) 9481 3329
(02) 9515 7310
employed by the Foundation and either may be
readily contacted Australia wide. If the nurses are
Email:
not directly available please leave a message and
khose@bigpond.com
tkuk@bigpond.net.au
your call will be returned as soon as possible.
Please note that either nurse is available for a
Contact days:
discussion, toll-free, from anywhere within Australia.
Thursdays & Fridays
Mondays & Tuesdays
Both Tracy and Kaye have a comprehensive
knowledge of myeloma and both will welcome, on
Website:
www.myeloma.org.au
their respective days on duty, talking with you in
absolute confidence on any myeloma related matter
of your choosing.
Travel insurance purchased through the internet
In this issue .....
page
may appear cheaper but it is not designed for people
Editor's Report
1
with pre-existing conditions and you may get better
Contacting the Nurses
1
cover through your Travel Agent.
Travel Insurance
2
Always read the fine print to make sure that you
Bone Marrow Biopsies
2
are fully aware of what is covered in the policy.
Dental Health during Cancer Treatment 2
Even if you have trouble obtaining Medical
Bone Disease
3
Cover for your existing medical condition, you should
MM Support Group Report
4
be able to get other forms of Travel Insurance such
as baggage protection.
Living with Myeloma Program
4
I was also told that the policy we purchased is being
(Flyer page 13)
updated over the next six months.
News Articles
4
Brian Rosengarten
News From the Foundation
7
November Workshop
Back page
Bone Marrow Biopsies
It is good to see techniques improve over a period of
time.
Travel Insurance
Previously my biopsies had been extremely
painful.
Recently I found however that a sedative
Since my early involvement with Myeloma Victoria, I
can be administered which made the procedure
have had many discussions with others, where we
"almost" enjoyable!
have spoken about the difficulty in obtaining Travel
This technique was used in a public hospital.
Insurance once someone in the family has cancer
Thought this might help those who are apprehensive
such as Myeloma. We have found that many
about the procedure.
insurance companies either make it very hard to get
Glenys Moran
cover
or
charge
excessively
higher
premiums
because of the pre-existing condition.
(Editor: For more information on Bone Marrow
So it was a great surprise when my wife and I
Biopsies read our Information Sheet 2b.)
booked our last holiday to far north Queensland,
when the travel agent offered us a policy if we
Dental Health during
purchased it at the time of making the bookings.
They told us for an existing medical condition "this
Cancer Treatment
exclusion will be waived". This policy only covers
travel by an Australian Resident within Australia. I
Enclosed in this edition of MyeVic is a brochure
completed the application form and filled in the
produced and supplied by Novartis Pharmaceuticals
relevant information about Ros and they accepted
Australia Pty Ltd. This is an excellent brochure which
our cover with no surcharges.
outlines good dental hygiene especially for cancer
This policy was through QBE Travel Insurance
patients who have or may have to use chemotherapy
and it could only be purchased through specific
agents.
Travel Agents, in our case the Queensland Travel
I would like to thank Novartis Pharmaceuticals
Centre.
Australia Pty Ltd for making these available to us.
I have since had a long discussion with a Travel
As most Myeloma patients use bisphosphonates,
Insurance company representative to be told some
it is important to be aware of Osteonecrosis of the
very interesting points.
jaw which is outlined in the brochure. For more
Travel Insurance for travel in Australia does not
information on osteonecrosis of the jaw read the
cover medical insurance as this is covered by
summary of Dr Brian Durie's presentation which he
Medicare and your private Medical Cover such as
gave at our seminar last April (page 3).
HBA, Medibank Private etc.
Brian Rosengarten
Travel insurance can be purchased for travel out
of Australia subject to a review of your medical
condition. Apart from your health, an important factor
to insurers is which country you want to visit.
Countries that insurers are more likely to decline are
North America and others where the medical costs
are so very high and countries (like Indonesia and
Fiji) where quality medical care is not readily
The information presented in MyeVic is not intended
available. Countries that you will find it easier to get
to take the place of medical care or the advice of a
cover for include New Zealand and Thailand where
doctor. Your doctor should always be consulted
there is good quality and less expensive medical
regarding diagnosis and treatment.
care.
MyeVic--2
Bone Disease
Investigations are very important: x-rays and
bone density tests are used to detect the fragility of
the spine. Positron Emission Tomography (PET)
scans are useful in the active stages of disease.
A summary of the lecture
Sestamibi scanning, imaging using a small amount
by Dr Brian Durie at the
of radioactive tracer, can be useful in detecting slow
April Myeloma in 2005
moving spots in the bone.
Seminar in Melbourne.
Radiotherapy is not usually the first treatment of
choice as this may limit bone healing. The preferred
option is to treat the actual myeloma with a treatment
re gim e
incl u d in g
VAD
or
Thalidomide/dexamethasone. Some patients may
require bone stabilisation surgery.
The
administration
of
bisphosphonates
is
Bone disease is a central aspect of living with
important
in
the
treatment
of
bone
disease.
Multiple Myeloma (MM).
Bisphosphonates are recommended in all patients
Eighty percent of patients with MM will have to
with bone destruction:
deal with bone disease while ten to twenty percent
Aredia should be administered over a period of
will never suffer from bone lesions. The spine and
2 4hours monthly dose 90mg or
skull are most frequently affected. The bone lesions
Zometa should be administered over a period of
located in the skull usually do not cause any
15 45 minutes monthly dose 4 mg.
problems,
however
sometimes
patients
may
If there are concerns about kidneys then the
experience tenderness and swelling in the area. The
bisphosphonate
may
be
administered--every
pelvic area, hips and lower-back are weight carrying
second month with a longer duration of infusion. The
bones and when affected usually cause pain and are
factors which may increase a patient's susceptibility
at risk of fracture.
to kidney problems include being female, over 60 yrs
The reason why bone disease is so common in
of age, diabetes and high blood pressure.
MM is because the myeloma cells interrupt the
Osteonecrosis of the jaw occurs when there are
equilibrium of bone breakdown and reformation
problems with the remodelling of the bone in the jaw,
which is important in the continual process of
usually under the teeth. A patient does not need to
remodelling bones. Osteoclasts are responsible for
have teeth in the region for this problem to occur.
the bone breakdown by producing chemicals which
Problems occur when little fragments of dead bone
dissolve the bone. Myeloma cells trigger these
splinters become exposed predisposing the jaw to
osteoclasts. The bone rebuilding cells (osteoblasts),
inflammation, infection, gingivitis (gum disease) and
that are responsible for remodelling and bone
abscess. Head and neck radiation can cause
reformation, are blocked by the myeloma cells. This
osteonecrosis of the jaw.
process causes thinning out of the bone and the
Osteonecrosis of the jaw may also be linked with
bone becomes fragile and susceptible to fracture.
bisphosphonate treatment. In a study conducted in
If the spine is affected the discs in the front of the
the USA, it was found that the most at risk (81% of
spine can herniate, that is the disc bulges out of its
the study group) had underlying problems with their
usual position between the vertebrae. This can lead
teeth. It is important to have a baseline dental check
to curvature of the spine and crushed vertebrae.
prior
to
commencing
treatment
and
it
is
There are two procedures which can help with pain
recommended
that
bisphosphonate
therapy
is
control by recovering shape and taking the pressure
ceased while dental work is being done and
off nerves:
bisphosphonate therapy recommenced on a lower
schedule. Teeth should be removed
with the
1. Vertebroplasty is an older technique where a
greatest
caution
when
patients
are
on
needle is used to inject a cement into the spine.
bisphosphonates.
2. Kyphoplasty - is a newer technique where a
Kaye Hose
needle is used (under local anaesthetic) to inflate a
balloon which is inserted into the collapsed vertebrae
to restore as much of its original height as possible.
Bone cement is then inserted via the needle into the
balloon to strengthen and assist with the recovery.
This procedure assists with regaining alignment of
the
spine
and
alleviating
crushed
vertebrae
Patients' Stories
symptoms. This procedure can be performed in an
We have always had a very good response from the
outpatient setting and is widely used in the USA.
patients' stories we have published. Please write out
Lytic
lesions
are
small
areas
of
bone
a short history of your experiences and forward it to
degradation and bone thinning. In severe cases,
us. It can be printed with your name and specific
calcium is released into the bloodstream which can
details omitted or changed if you prefer. Please limit
your story to about 800 words.
affect the kidneys.
Mye Vic--3
Multiple Myeloma Support
Thursday in November the topic of discussion will be
holiday preparations, and then early next year we
will have someone speak to us about the various
Group Report, 11 August
kinds of bone scans and x-rays that doctors can use
We all know that exercise is good for us but those
to get a picture of what is happening in the bones.
who attended the support group meeting at Kew
Anyone interested in joining us is very welcome to
recently learned quite a bit more. The group met as
come and make suggestions for future meetings.
usual on Thursday morning and shared a cup of tea
(Margaret Tyrrell)
and a chat before the speaker took the floor. We all
enjoy the opportunity to catch up with others and
Living with Myeloma
share stories and a few laughs. Being part of a
support group is recommended as a way to break
Program 2005
down the isolation that can occur when you have a
In this newsletter I would like to promote the next
life changing experience like getting a serious
Living
with
Myeloma
Program
commencing
illness. And I find it reassuring to meet others who
21 October 2005 (please see attached flyer). This is
are dealing with the same issues that I am facing. At
a 4 week program formulated to provide information
Kew our nurse Kaye Hose's young son Josh is
on Multiple Myeloma, treatments and how to live with
always good for a diversion.
the symptoms. The program is run in conjunction
Our speaker was Anya Traill, a physiotherapist
with the Cancer Council Victoria. It is for patients,
from the Peter Mac. She pointed out that recent
carers, friends and family members who would like
studies have shown that exercise has many direct
to have a greater understanding of living with
benefits for cancer patients like increased strength
Multiple Myeloma. It has also been designed to be
and
energy
levels,
reduced
fatigue,
improve
inclusive for newly diagnosed patients and also
depression and anxiety and overall quality of life and
patients who may have had Multiple Myeloma for a
physical appearance. The immune system also
number of years and would like more information.
benefits from stimulation of the production of vital
The feedback from the Living with Myeloma
cells like haemoglobin, neutrophils and platelets. It
Program in 2004 was very positive and some
can also lead to the reduction in the levels of cortisol
comments and feedback from last year's program
while boosting endorphins. Less of the bad and more
were:
of the good.
The speakers were well chosen and really
And it can be fun too if you do it in a group or with
informative. They have cleared up a lot of my
friends.
queries
She had a few warnings. Of course you must
It was great being able to meet other patients and
tailor any program to your individual state of health,
carers and share experiences
and it helps to have a clear idea of the condition of
A big plus was talking to other people who were
your bones. And then to understand that to gain
going through the same thing.
energy it is necessary to put out energy. It can take a
Please contact me if you are interested in attending
few weeks to feel the benefits. Because fatigue can
the 2005 Living with Myeloma Program.
be a factor at first it pays to start slowly and build up.
For more information see the attached flier.
She did say that a little regularly over time is better
Kaye Hose
than a big effort occasionally especially if the big
effort leaves you feeling very tired. And that the first
Spice Blocks Melanoma
five minutes is the hardest. That's where I find a
daily routine and a friend can be a great help.
Growth in Lab Tests
Anya recommended building in exercise and
movement even while in hospital and when having
Curcumin Studied
treatment because this stops the level of fitness
dropping so low that it is very hard to get going
Throughout World in
again. She also told us that night sleep is best for
both fitness and mood elevation.
Various Cancers
Gadgets that help some people are a pedometer
to measure how far you have walked and a band to
Journal of Cancer August 2005
show the impact on your heart rate. Some people
Curcumin, the pungent
yellow spice found
in
like to use an exercise bike. And I was surprised to
turmeric and curry powder, blocks a key biological
learn that sitting on a fit ball is very good for
pathway needed for development of melanoma and
improving balance. None of these have been shown
other cancers, M.D. Anderson Centre (Texas, USA)
to have any benefit unless actually used. Walking is
researchers say.
probably the cheapest and most accessible form of
The study, to be published in the Aug. 15 issue of
exercise. She suggested aiming for thirty minutes of
the journal Cancer, and now available online,
exercise to increase the heart rate each day. I found
demonstrates how curcumin stops laboratory strains
the session very helpful.
of melanoma from proliferating and pushes the
At the next group meeting on the second
cancer cells to commit suicide.
continued page 5
MyeVic--4
continued from page 4
NEW YORK (Reuters Health) Jul 12 - Thalidomide in
"The antioxidant, anti-inflammatory and anti-
combination with dexamethasone is more effective
carcinogenic properties of curcumin derived from
than *vincristine-doxorubicin-dexamethasone (VAD)
turmeric are undergoing intense research here and
in preparation for autologous transplantation in
at other places worldwide," says one of the study's
patients with multiple myeloma, according to a report
authors, Bharat Aggarwal, Ph.D., professor of cancer
in the July 1st Blood.
medicine
in
the
Department
of
Experimental
"After more than 3 decades without new drugs to
Therapeutics.
treat multiple myeloma, the future is bright," Dr
At M. D. Anderson, for example, dramatic results
Michele Cavo from University of Bologna, Italy told
from laboratory studies have led to two ongoing
Reuters Health. "Obviously, we must determine the
Phase I human clinical trials, testing the ability of
optimal sequence and combination of these agents."
daily capsules of curcumin to slow growth of
"A new phase III
study aimed at comparing
pancreatic cancer and multiple myeloma. Given that
th alid om id e- de xam e t ha so ne
v s.
V elca de
curcumin is non-toxic, future trials are expected to
(bortezomib, a proteasome inhibitor)-thalidomide-
begin in both animals and humans for other cancers,
dexamethasone
as
primary
therapy
and
as
Aggarwal says.
consolidation therapy for multiple myeloma patients
Ground from the root of the Curcuma longa plant,
who are candidates to receive double autologous
curcumin is a member of the ginger family. It has
transplantation will be started in Italy within the next
long been used in India and other Asian nations as
few months and will be chaired by the 'Sergnoli'
a:
Institute of Hematology in Bologna," Dr Cavo said.
Food preservative
"Revlimid (lenalidomide) also has the potential to be
Coloring agent for food and textiles
an important new agent for the treatment of multiple
Spice (2% to 5% of turmeric is curcumin)
myeloma," Dr Cavo added.
Folk medicine to:
"In the past 5 years, new classes of agents
Cleanse the body
targeting both the myeloma clone and the bone
Heal wounds
marrow microenvironment have been shown to have
Prevent wrinkles
significant activity in multiple myeloma and hold
Suppress inflammation
promise to offer extended survival and better quality
Knowledge
of
curcumin's
anti-inflammatory
of life to most of the patients suffering from this
properties and the growing realisation that cancer
devastating disease," Dr Cavo concluded.
can result from inflammation has spurred mounting
Blood 2005;106:35-39.
interest in the spice, Aggarwal says. Another fact
(*Editor:
Doxorubicin
is
the
drug
name
for
that
has
generated
further
excitement:
"The
Adriamycin which is a trade name)
incidence of the top four cancers in the United States
colon, breast, prostate and lung is as much as
FDA Approves IDT Facility
ten times lower in India," he says.
M. D. Anderson and other institutions previously
to Manufacture
found that curcumin inhibits tumor cell proliferation
and angiogenesis, the process by which new blood
Thalidomide for Celgene
vessels form from existing vessels.
An ability to suppress numerous biological routes
ASX Announcement of 7 June 2005 by IDT
to cancer development is important if an agent is to
Institute of Drug Technology Australia Ltd (IDT) has
be effective, Aggarwal says. "Cells look at everything
been granted approval by the US Food and Drug
in a global way, and inhibiting just one pathway will
Administration to supply commercial quantities of
not be effective."
THALOMID ® (thalidomide) to its client, Celgene
The study results are encouraging, Aggarwal
Corporation, a U.S. based global biopharmaceutical
says, yet he cautions that they are lab findings and
company. The approval will allow IDT to supply
much
study
needs
to
be
done
before
any
Celgene from its state-of-the-art containment facility
recommendations might be made regarding use of
at
its
Boronia
complex.
IDT
established
a
curcumin by the general public.
manufacturing and supply agreement with Celgene
in September, 2003.
"Both
the
FDA
and
Celgene
should
be
Thalidomide More Effective
commended for the expertise and diligence which it
took to ensure that the IDT facility would be licensed
Than Conventional
to
supply
product,"
commented
Dr
Graeme
Blackman, Chairman and Managing Director of
Chemotherapy for Multiple
Institute of Drug Technology Australia Ltd. "The FDA
approval was a significant win for the Australian
Myeloma
pharmaceutical industry and confirmed IDT as a
`world class' GMP manufacturer of highly potent or
Reuters Health Information 2005. © 2005 Reuters
cytotoxic drugs."
Ltd.
By Wil Boggs, MD
Mye Vic--5
Encouraging Frogs
A group of frogs were traveling through the woods, and two of them fell
into a deep pit. All the other frogs gathered around the pit. When they
saw how deep the pit was, they told the unfortunate frogs they would
never get out. The two frogs ignored the comments and tried to jump up
out of the pit. The other frogs kept telling them to stop, that they
were as good as dead. Finally, one of the frogs took heed to what the
other frogs were saying and simply gave up. He fell down and died. The
other frog continued to jump as hard as he could. Once again, the crowd
of frogs yel ed at him to stop the pain and suffering and just die. He
jumped even harder and finally made it out. When he got out, the other
frogs asked him, "Why did you continue jumping? Didn't you hear us?"
The frog explained to them that he was deaf. He thought they were
encouraging him the entire time. This story teaches two lessons:
1. There is power of life and death in the tongue. An encouraging word
to someone who is down can lift them up and help them make it through the day.
2. A destructive word to someone who is down can be what it takes to
kill him or her. Be careful of what you say. Speak life to those who
cross your path. The power of words ... it is sometimes hard to
understand that an encouraging word can go such a long way. Anyone can
speak words that tend to rob another of the spirit to continue in
difficult times.
Special is the individual who will take the time to encourage another.
(Anonymous)
MyeVic--6
NEWS FROM THE FOUNDATION
What's in the Business Plan
commitment of you as a carer forms a vital part in
supporting your relative or friend as they seek to
manage their chronic illness.
for 2005/2006 ?
In this study the Chronic Illness Alliance and
The Foundation's year ends 30th June so when we
researchers from La Trobe University, School of
refer to our plans for the year this means for the year
Public Health hope to better understand your
ended 30th June 2006.
practical situation as a carer, and the impact of
To summarise the major objectives approved by
caring on your health and well-being.
the Committee of Management in July, I thought it
Your input in providing information for the survey
best to list these by way of bullets. Explanations on
would be most appreciated and may be used in
some of the bulleted items appear elsewhere in this
future submissions made by the Chronic Illness
newsletter.
Alliance
to
relevant
government
departments
regarding carers' issues in caring for their relative or
A major Patient & Family seminar to be held in
friend with a chronic illness.
Sydney early 2006.
Knowing that your time is valuable, the survey, a
Implementation of a comprehensive nation-wide
written questionnaire, is expected to take about 25-
ready access freecall telephone system available to
35 minutes to complete. Areas explored are your
all who seek information about myeloma.
carer's role, your general health and wellbeing, and
a section that allows for self-reflection on your caring
Release of a video/DVD on "Multiple Myeloma".
role. Confidentiality and anonymity is assured.
Renewed efforts to improve the government
If you choose to participate in this study your
approval process for the latest life-saving drugs that
responses will form an important contribution in
target myeloma.
identifying carers' health status and informing the
Facilitating
the
formation
of
independent
health sector of carer supports and services
Myeloma Support Groups around the country.
needed.
To reflect the Foundation's national identity, the
To obtain a copy of this survey or further
newsletter "MyeVic" is to be renamed "MyeNews"
information please contact:
and to be reformatted so as to spread information
Sylvia Gajek on 9338 7787
evenly from and across all States in Australia.
Email: gajeksyl@hotmail.com (Masters Student in
Strengthening
ties
with
peak
international
Counselling Psychology)
myeloma bodies.
Sylvia is being supervised by Dr Greg Murphy,
La Trobe University, contact details: 9479 1745,
Alerting those interested in clinical trials being
Email: G.Murphy@Latrobe.edu.au.
conducted for myeloma patients in Australia.
The above are new initiatives. Such projects as
occasional half-day workshops, information sheets,
Volunteers Wanted
the "Living with Myeloma" programme,
the MERA
seminars in regional areas and maintenance of the
Care to do some voluntary work ?
web page will naturally continue.
At least two opportunities exist at Association
I believe the ten voluntary members of the
headquarters.
Committee together with our two Myeloma Support
Firstly
our
overworked
secretary
would
really
Nurses are to be congratulated not only on what they
appreciate someone prepared to take the minutes at
have achieved so far but for their enthusiastic
our bi-monthly meetings of the Committee of
support for this year's business plan.
Management. To this may be added a few other
Last year's plan was successfully implemented
secretarial duties - but these would not be onerous.
and I see no reason to doubt that the objectives set
If you feel you might be able to help please give
in this year's plan will again be met.
Irene Beattie a call on (03) 9807 9841.
Robert Moran
Secondly,
anyone
who
has
a
penchant
for
An Invitation for Victorian
communications hardware. We wish to consider
installing some form of video conferencing. A system
Carers to Participate in a
that would allow us to listen to, talk to and watch our
friends from interstate and even overseas. If you
Study Concerning Their
happen to be familiar with this type of technology
and would like to help please call Robert Moran on
Health and Well-being
(03) 9817 4331.
The Chronic Illness Alliance has worked steadily to
highlight the situation and needs of individuals and
families living with a Chronic Illness. The work and
Mye Vic--7
NEWS FROM THE FOUND ATION
Myeloma New South Wales
chemo, Dr H. sent me for a consult with Prof. Kerry
Atkinson with the view to having a stem cell
Welcome Shaun Raby
transplant. I underwent the stem cell collection at
St Vincent's and had my transplant at Liverpool (only
Myeloma New South Wales, formerly the Myeloma
the 3rd they had done) on the 12 of January 1994.
Awareness Group, officially joined the Foundation on
I was in hospital for about 12 days and I nagged the
21 July 2005. It has become a sub-committee of
nurses and doctors so much that they let me go
MFA operating along similar lines to Myeloma
home and just come back each day for blood tests.
Victoria.
The transplant put me into a great plateau phase
This represents a very significant move for MFA
and my paraprotein stabilised at about 25. We then
as it now has a base from which to expand in the two
tried to mobilise stem cells again with the view to
most populous States in the country. Expansion for
having a second transplant but unfortunately after 4
the sake of expansion is meaningless. However
attempts to collect stem cells we gave up. I started
where that expansion means an opportunity to reach
on Interferon injections 3 times per week. The good
out and offer support to more and more members of
side effect of the mobilisation attempts was that the
a very special community then the advantages are
four hits of Cyclophosphamide that lowered my
enormous. Our belief is that this new merger will be
paraprotein to around 12, which is where it stayed
hugely beneficial to all concerned.
until late 2002, then it slowly started to creep up. We
On 21 July Shaun Raby, the leader of Myeloma
watched the paraprotein until March 2004 when it
Awareness Group, was appointed Chairperson of
reached just over 22. Dr H. offered me Thalidomide
Myeloma NSW. We have asked him to provide a
and I started taking 50mg a day. My paraprotein is
thumbnail sketch about himself and his involvement
now down to 3.7, the lowest it has been since I was
with myeloma. Here is what he has to say:
diagnosed. I am now 44 and looking forward to
dancing with my granddaughter at her 21st birthday
My Story
party. (A far away event considering my daughter is
Hi, my name is Shaun Raby and I live in Liverpool
only 15)
NSW with my wife Linda and my two kids, Samantha
I was taught meditation by a Buddhist monk and
and Joel.
he said you need to set yourself long-range goals.
I have recently been invited to join the MFA
Linda and I have attended all of the International
national committee and attended my first meeting of
Myeloma Foundation's patient and carer seminars
the committee last month.
that they have held in Sydney. It was at one of these
I was diagnosed with MM on the 21 of July 1992.
in
1999
that
I
met
Laurie
Howell
(Myeloma
I was diagnosed after I had a severe sinus infection.
Australasia) and set about forming a support group
I had previously been to another GP about chronic
for the south west of Sydney. We called our group
back pain and he referred me to his brother, a
the Myeloma Awareness Group (MAG). About 10
Chiropractor, which was a waste of time. When I got
people who were all interested in meeting other MM
the sinus infection I decided to go to another GP and
patients attended the first meeting. Our database
he ran some blood tests and then referred me to a
grew steadily and MAG became more of an
haematologist. Linda and I went to the appointment,
information dispersal utility rather than a traditional
both naïve as to what exactly a haematologist did.
support group. Information was sent out via email
We sat in the waiting room with all these sickly
and snail mail to about 80 or so patients and carers
looking people, some without hair, and it still did not
on our mailing list. The Lioness club of Liverpool
twig with us. We had the appointment with Dr
financially supported us. Together we held a Trivia
Harvey. He took more blood and then said I would
Night and raised funds for us to pay for postage and
need a Bone Marrow Biopsy. That's when alarm
printing etc. During this time we kept in close contact
bells started ringing with us. (Linda's cousin had
with Myeloma Victoria and they even allowed us to
Leukaemia when she was 11 and so we knew that a
distribute their great newsletter to our list members.
bone marrow biopsy was a serious test). I had the
We further strengthened those ties this year and
biopsy (I hate those things) and had to wait 4 days
decided join MFA as the NSW committee. I am
for the results.
grateful to the MFA national committee for their
On the results day we were more aware of the
invitation to join them and look forward to being an
people in the waiting room and a tad apprehensive.
active member of the committee.
Dr Harvey gave us the news that I had Multiple
Shaun Raby
Myeloma. We had never heard of it and asked a little
more about it. The only information that Dr H. was
able to locate was from an old textbook and the
news shocked us, it was very dismal, not the sort of
news that I wanted to hear at 31 years of age.
Dr Harvey recommended a 12 month course of
chemotherapy (PCAB). About 6 months into the
MyeVic--8
NEWS FROM THE FOUNDATION
The Brian Adams Memorial
The names of all of these donors have been
recorded in the Honour Roll.
In the last issue we advised that the complete list
Honour Roll
of those entitled to an entry in the Honour Roll will be
The association maintains a special Honour Roll
published in MyeVic on an annual basis. As the
initiated by the family of the late Brian Adams of
association's year ends on 30th June, we are
Burnie Tasmania. The roll takes the form of an
displaying the names below of all who have made
attractively crafted Australian made album which is
donations up to 30th June and whose names have
proudly displayed at all association functions.
not yet been published.
Since the last report (MyeVic Issue No 22) a
As mentioned earlier if for any reason you would
further 61 individuals have donated $2,500, the
prefer not to have your name listed, please record
Department of Human Services $1,200 and the
this fact when making your donation or advise the
Rotary Club of Camberwell through the "Business of
Secretary.
winning" fundraiser a very impressive $14,057.
C M Adams
P Druitt
M Martin
R Standen
Robert Adams
Robert Dun
R Matthews
Malcolm Stanton
David Adams
R Egers
Joan McColl
L Sterzenbach
C & A Adams
A H Ekers
M McInerney
G Stuart
O Anlanger
P Ekers
J & A Michaelides
R Sutherland
Sharyn Arthur
Jenny Ellison
R Modystack
Charles Tegner
W Attwood
June Fagg
R Moloney
I Ternes
R&M - K&H Ball
G Fitzgibbon
O G Moore
H M Thiele
K Ball
Gerry Fourniotis
Terry Moore
Maureen Tilders
William Baxter
W Frost
V Moriarty
P Wallace
Joy Beattey
M Hare
Maree Morris
Yarra Valley Water
D & S Bessell
D K & R Harrison
Phillip Morris
P Waterfall
P Bone
B Heriot
Cathy Moustis
N & D Watson
Heather Borrman
David Hoyune
Sheila Mullard
G Watson
Ellen Bowen
Mardi Huggins
J & A Murphy
Rosemary Webster
Maurice Brackett
Nancy Jacobs
K Naismith
W Whitford
Victor Brand
Shann Jacobs
H C & D M Norris
J & R Willett
L Bruhn
R B Johnson
C Padnessa
Gordon Willett
H Buckingham
F & J Johnson
D Parkinson
David Williams
G Burnham
L Kann
D & W Parrington-Jones
C Williamson
John Cameron
Rick Kemp
H Patterson
G C Wise
Anne-Louise Cameron
S & A Galvin
M & R Pegler
R G & T Wraith
John Cameron
C G & L P Geldart
Barbara Pickett
J Wright-Smith
David Carthew
S & J Gladman
McKeown Plumbing
Barry Wythe
P Chalmers
Bill Goodall
Sandi Porter
Huiling Xu
J C & R Chandler
Helen Goodman
J & T Pyke
R Yallop
L M & J Chandler
B Griffin
RMIT
Neil Chasemore
Colin Gurner
Daniel Ranson
M Chenoweth
D A Kendall
Maureen Reidy
Ivan Ciran
N Keogh
Family Richardson
M & A Cordiano
Robyn Kere
Yvonne Roche
Gerry Cornish
J & G Kimberlin
Alison Rosamilia
Catherine Cotton
D & M Kipouridis
A & J Rosengarten
K Davidson
M Knobel
Camberwell Rotary Club
Jean Davidson
B Law
L D Sands
M Dealy
M Leathem
Lynette Schier
B Delaney
D R Legge
Leo Schoenmaskers
K & E Didenkowski
K & Lomas
E & G Semt
Pat Dobson
A & G Lyons
J & S Simmonds
H & D Dodds
M & R Macey
Lynn Simpson
Anne Doganieri
M MacKinnon
Yvonne Smith
M Donaghy
Mary MacKinnon
Sen Citizens St Stephens
Mye Vic--9
NEWS FROM THE FOUND ATION
Video on Myeloma
Myeloma Support Groups
In
cooperation
with
MFA,
the
Janssen-Cilag
The concept of the Myeloma Support Group (MSG)
organisation has sponsored an excellent Video/DVD
is based on a desire to ensure that all those affected
on Multiple Myeloma.
by myeloma have access to the support they need.
The video, which runs for 30 minutes,
was
From a patients' perspective this need is to talk to
produced by Chris Gerrans of CGTV. Chris has wide
people "who have what they have and feel what they
experience in producing videos such as this in the
feel". An MSG provides emotional support, friendship
television industry.
and relief from isolation.
The stars of the show, both myeloma patients,
Australia is huge and myeloma patients are
are Alan Lyons from Melbourne ( a former committee
spread in clusters from the smallest of rural
member of MFA) and Sally Evans from Echuca.
communities to the inner suburbs of the big cities. To
They have both done a wonderful job in this
satisfy the particular needs of these communities
presentation. The commentator is Professor Miles
there should be a number of strategically located
Prince from Peter MacCallum Cancer Institute and
venues where myeloma patients and their families
his lucid explanations help to make this one of the
can come together and meet and interact with others
best educational products around.
in similar situations. For patients in particular, these
There are two powerful stories presented by Alan
venues should be within a reasonable distance of
and Sally and their respective families portraying just
home. Excessive travel is a big issue for patients
what they have gone through and what the future
with myeloma.
holds for them. For those familiar with the ABC
The reasons for forming a support group are
programme "Australian Story", the format of the
many. They include a wish to raise funds for
video runs along very similar lines.
research, a desire for fellowship and friendship with
Janssen-Cilag has agreed to make a limited
those in their own ranks, the sharing of personal
number
of
these
videos
available
to
MFA.
experiences, and probably the most sought after, a
Recognising the importance of this production, MFA
hunger for information. The sort of information
has decided that it should be made available at no
generally relates to the nature of myeloma, the latest
cost to both its subscribers and other interested
treatment options and coping.
parties. A small charge applies for postage and
MFA is keen to help anyone interested in forming
handling.
a support group. There are of course considerations
The Video/DVD should become available during
such
as
the
reasons
for
forming
the
group,
September. If you wish to reserve a copy please fill
leadership, support from social workers or others,
in the application form below and send to Shaun
aims, costs, insurance and many other matters.
Raby, 27 Kennedy Street, Liverpool NSW 2170 and
MFA can provide guidance here in a number of
enclosing a cheque for $5.00 for postage and
ways. The important thing is to have an initial
handling. If you prefer you may send stamps to the
meeting.
value of $5.00 (fifty cent stamps preferred).
So far there are only a few MSG's around. In
Let Shaun know which version you would prefer
Victoria Myeloma Mates operates from Geelong
(video or DVD) and your address. It is expected that
under the leadership of Neil Chasemore. Myeloma
sufficient stocks will be available to meet the
Support Nurse Kaye Hose leads a group at Kew in
demand. However to be on the safe side it is best to
the eastern suburbs of Melbourne. A further group
make your reservation as early as possible.
operates from Port Macquarie while in Queensland
the
Leukaemia
Foundation
hosts
a
group
in
Brisbane. The ideal location for a Myeloma Support
Group is in a city which supports a population of at
cont page 11
Application for Multiple Myeloma Video/DVD
Please forward ____ number of copies of the Video /DVD at $5.00 each
$_________
(Please mark which media form required)
Cheque, money order
or stamps
Name:
Address:
Suburb:
State:
P/C:
Please post to
Shaun Raby
27 Kennedy Street, Liverpool, NSW 2170
M y e V i c -- 10
NEWS FROM THE FOUNDATION
continued from page 10
treatment to recovery.
least 60,000 people. For example cities such as
Free services include counselling and support,
Wollongong, Newcastle, Albury, Ballarat, Darwin or
`home away from home' accommodation close to
Canberra would be ideal locations for a group to be
treatment centres, patient transport and practical
formed. Such a support group should be well able to
assistance.
attract from 20 to 50 members. As myeloma is a
We also hold education seminars such as our
relatively rare condition cities of this size would be
luncheon seminars `Myeloma--New treatments and
required to get enough patients in the same area.
trends' held around Victoria.
A Myeloma Support Group has so much to offer.
The Foundation also has a range of information
This is partly due to the fact that many people and
booklets including Understanding Multiple Myeloma
organisations are prepared to help in running it.
and Information for people living with leukaemias,
Among those are local health authorities, social
lymphomas or myeloma.
workers, organisations such as the Leukaemia
Working closely with Kaye in Victoria services are
Foundation and of course the members of the
provided by a team of trained haematology/oncology
committee of Myeloma Foundation of Australia.
nurses
and
allied
health
professionals
across
If anyone would like to consider setting up an
metropolitan and regional Australia.
MSG all that is required is a phone call and help is at
As well as patient support, the Foundation funds
hand. For Victorians please call Brian Rosengarten
ground breaking research into better treatments,
on (03) 9578 6363 or Kaye Hose on (03) 9486 1520.
diagnosis and cures for leukaemias, lymphomas and
For those is states other than Victoria call Robert
myeloma through its National Research Program.
Moran (03) 9817 4331.
Across Australia, the Foundation has invested
millions into important research initiatives such as
The Strengthening of Ties
the Leukaemia and Lymphoma Tissue Bank and the
Leukaemia Foundation Research Unit at QIMR. The
Major structural changes have occurred at the
Research Unit was established to find a cure for
Leukaemia Foundation. Whereas the various States
haematological malignancies and related disorders
have in the past worked more or less on an
and deliver the benefits of new discoveries to
autonomous basis, now it is understood that a form
patients as quickly as possible. The research funds
of
consolidation
has
taken
place
and
the
have also provided a wide range of research grants,
organisation is now identified throughout the country
fellowships and scholarships, as well as clinical
as the Leukaemia Foundation of Australia.
trials.
Beth Everleigh, Manager Support Services, has
In 2005, the Foundation is funding the following
supplied the following article. In reading this one can
myeloma research projects:
appreciate the magnitude of its operations insofar as
Jennifer Freeman, PhD Scholar
it applies to all blood cancer conditions and the
Further definition of the tumour antigen targets for
importance of MFA and LFA continuing to work
DC based immunotherapy in multiple myeloma.
closely together.
Dr Graeme Suthers and Associate Professor
Richard D'Andrea
Support
for
Australian
Familial
Haematological
Cancer Study 2005 (to include Multiple Myeloma
patients).
Associate Professor H G Schneider and Dr John
W Sentry
Leukaemia Foundation
Primary cultures of human myeloma cells to identify
genes involved in bone marrow survival of myeloma.
Supporting the Myeloma
Dr D Honemann and Associate Professor H M
Community
Prince
The blood group related to antigen LewisY as a
As some of you may already know The Leukaemia
target structure for immunotherapeutic strategies for
Foundation is a national not-for-profit organisation
the treatment of multiple myeloma.
dedicated to the care and cure of people living with
If you'd like more details about the Myeloma
haematological cancers such as myeloma. We at the
research funded by the Leukaemia Foundation just
Foundation work closely with Bob, Brian, Kaye,
ring us at the Foundation.
Tracy and the team at the Myeloma Foundation to
The Foundation celebrates its 30th year in 2005
provide the best possible services to the Myeloma
and is looking forward to working closely with the
community.
Myeloma Foundation across Australia to the benefit
The Foundation offers a range of personalised
of everyone in the Myeloma community.
and practical services to assist people with a blood
Beth Eveleigh Manager Support Services and
cancer
such
as
Myeloma
and
their
families
Chris Browne CEO Leukaemia Foundation (Victoria).
throughout their journey from diagnosis and
Tel : 1800 555 021.
M y e V i c -- 11
Coffeeholic the drip of life
Smart Quote
"You work your whole life to try to be the best you can, even if it's for only one day or one week."
Lindsay Davenport,
tennis player
"Some people have a negative attitude, and that's their disability."
Marla Runyan,
Olympic runner who is legally blind
Cheap Dial Up Internet
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It has come to our notice that TADAust Connect
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sively for people who possess a Disability Service
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Local Call anywhere in Australia
For more information contact TADAust Connect on
Flexible Contract period
www.tadaustconnect.org.au
There is only one Plan for TADAust Connect and
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Myeloma Calendar
Living with Myeloma course of 4 sessions
Friday 21 October
1.30pm
Friday 28 October
1.30pm
Friday 4 November
1.30pm
Friday 11 November
1.30pm
November Workshop--New Therapies
Saturday 19 November
9.30am
Geelong Seminar to be confirmed
February 2006
Shepparton Seminar to be confirmed
June 2006
M y e V i c -- 12
Myeloma Victoria, in conjunction with the
Cancer Council of Victoria is hosting a free 4 week
Living with Myeloma Program 2005
Partners, family and friends are invited to attend
This 4 session program will address:
Myeloma--What is it?
Treatment Options
Communication and relationships
Coping with Symptoms
Dates:
1.30pm--3.30pm, Friday 21 October
1.30pm--3.30pm, Friday 28 October
1.30pm--3.30pm, Friday 4 November
1.30pm--3.30pm, Friday 11 November
Note:
Registration and coffee between 1.00pm--1.30pm
for all sessions
Venue:
Kew Library
Corner Charles Street and Cotham Road
Melway reference: Map 45, D6
Parking:
Free behind library or metered street parking
RSVP:
The program is designed for attendance at ALL 4 sessions.
Booking is essential as places are limited
Prior to Friday 14 October 2005
Kaye Hose (Myeloma Support Nurse)
9481 3329
kayehose@bigpond.com
NOVEMBER MYELOMA
WORKSHOP
New Treatments in Myeloma
Guest Speaker:
Associate Professor Miles Prince
The Head of Haematology Unit
Peter MacCallum Cancer Centre
Date:
Saturday 19 November 2005
Time:
Register 9.30am
10.00am--12 noon
Venue:
John Scott Meeting Room
La Trobe University, Bundoora Campus
Melways Map 573 G6
Ample free parking in car park 7
RSVP by 12 November 2005 to Brian Rosengarten
(B) 9578 6363
(H) 9557 6683
Myeloma Victoria Inc.
Postage Paid
Australia
PO Box 2014 Mount Waverley, Victoria 3149