MDS NEWS
FOR PEOPLE WITH
MYELODYSPLASTIC
SYNDROME (MDS)
& THEIR FAMILIES
June 2015
AUSSIE BROADENS MDS RESEARCH EXPERIENCE IN
United States
Australian haematologist and MDS researcher, Andrew
Guirguis, is now working alongside world leader in MDS
research, Associate Professor Benjamin Ebert, in his lab
in Boston, Massachusetts (U.S.).
“This is a once in a lifetime opportunity,” said Dr Guirguis, as he
was preparing to leave Australia last month.
“I’m so excited about working with someone so renowned in the
field. It’s an amazing chance to see how research is done in another
country and to be surrounded by people with a passion for MDS.”
In 2011, Dr Guirguis was awarded a three-year clinical PhD
scholarship by the Leukaemia Foundation to investigate
the mechanism of cell death in early-stage MDS. His paper,
reporting on this research, is currently under review.
“Our understanding of the biology of MDS is only at its early
stages – so that’s a gap we have at the moment. And the way
the limited number of drugs used to treat MDS actually work is
poorly understood, and are associated with a number of sideeffects,” said Dr Guirguis.
“MDS cells die more easily than other cells. By targeting
a number of genes associated with cell death, I’ve
looked at ways to stop them dying with the aim of
increasing a person’s blood counts so they
don’t get anaemic. Unexpectedly,
under particular
circumstances,
this has also
been associated
with reduced
transformation
to AML.”
Dr Guirguis’ research has focused on the expression of PUMA1
in low-grade MDS and whether inhibitors of PUMA may be
useful in improving people’s blood counts.
“We’re trying to understand how cell death contributes to the
disease becoming more aggressive.
“It may be that an inhibitor of PUMA would be a useful treatment
in particular cases.
“Often we give people chemotherapy and this encourages cell
death, which may not be the best option for people with MDS;
and yet it is the prime form of treatment at present.
“This (research) has raised caution in giving patients chemo
and is challenging that idea. It might actually be a negative
thing and it may be doing more damage than good.”
Dr Guirguis first met Assoc. Prof. Ebert at the annual
conference of the American Society of Hematology in New
Orleans (U.S.) in December 2013 and then again at the
Leukaemia Foundation-hosted meeting – New Directions in
Leukaemia Research – at Noosa in March 2014.
“Ben has done a lot of work in MDS studying ribosomal
dysfunction and p53 activation in MDS particularly in the 5qsyndrome (a subtype of MDS). More recently, his lab has been
responsible for describing a number of key mutations that
associate with MDS,” Dr Guirguis said.
“I have long held a specific interest in the treatment and
management of MDS. By travelling to the U.S., I hope to strengthen
my understanding of the basic biology of MDS. Ultimately, I would
like to bring this knowledge back to Australia and drive translational
research and clinical trials based on the ongoing findings and
techniques developed. I hope to have a specific MDS clinic in
Melbourne that ultimately leads research at the bench and uses
the findings to drive clinical research and trials based on the
biology – a particular aspect which is currently lacking.”
“The biology underlying these disorders has only recently become
apparent. The available therapies therefore need to catch up with
this. It’s a bit of a delayed process,” he said.
1
p53 upregulated modulator of apoptosis.
IN THIS ISSUE
Dr Andrew Guirguis.
1800
620- 420
MDS
News
Februarywww.leukaemia.org.au
2015
My Journey: Malcolm Coombe .............................2 & 6
National MDS Day ...................................................... 3
Q & A with Professor Fenaux ...................................4-5
Cancer related fatigue ................................................ 7
Diary Dates ................................................................ 8
1
My Journey
DESPITE GVHD MALCOLM HAS NO REGRETS ABOUT
TRANSPLANT DECISION
Malcolm Coombe, 70, and his wife Carol had bought a
new caravan and 4WD and were planning to travel around
Australia when he was diagnosed with MDS four years ago.
This changed the course of their lives and their ability to get
away. Malcolm had an allogeneic stem cell transplant and
although he struggles with graft versus host disease (GVHD),
he leads a productive and fulfilling life and is optimistic about
the future. Here’s his personal account with MDS.
“In August 2010, Carol and I were one day into a short holiday in
our caravan to the Flinders Ranges when we received a phone
call from the doctor recalling us. I had been very tired and
lethargic and the results of blood tests were concerning to the
doctor. He made an appointment for me to see a haematologist
three weeks later. Rather than waiting around at home, we
decided to take off again on our little holiday anyway. At this
time I had given up work because of my lack of energy, but
Carol was still working.
“I was diagnosed with low grade MDS in September 2010. I had
never heard of MDS. The haematologist suggested all I needed to
do at that stage was have regular blood tests, with transfusions if
and when required. In the meantime, however, I was hospitalised
for a subdural haematoma* and golden staph infection. I was in
hospital for three months and my wife had to give up working.
“In August 2011, I progressed to high grade MDS RAEB1 which
required blood and platelet transfusions three times per week,
each time being a
180 km round trip to
Adelaide from our
home at Encounter
Bay. I was given
information on the
azacitidine trial
and bone marrow
transplantation. After
due consideration,
I decided to explore
the possibility of a
transplant.
“After all the testing
and in consultation
with the transplant
Malcolm and Carol Coombe at Port Elliot
doctor we decided to
not far from their home “on the beautiful
proceed. To me this
Fleurieu Peninsula” in South Australia.
was the best option,
as managing the clinical trial from where we live would have been
awkward. Luckily, one of my four siblings was a good match – my
younger brother, Geoffrey. He’s the only male in my family with a
full head of hair, so I asked the haematologist if that meant my hair
would grow back after the transplant! But unfortunately he said ‘no’!
* a bleed inside a sac that surrounds the brain.
Continued on page 6...
BLOOD BUDDIES SUPPORT OTHERS
Surveys by the Leukaemia Foundation revealed the largest
unmet need of people with blood cancer was their desire
to talk to others who had first-hand experience living with a
blood cancer.
“People who are referred to this service are matched according
to several key indicators with a trained volunteer who is known
as a ‘Buddy’.”
To help meet this need, the Foundation has established Blood
Buddies, which adds another arm to its
extensive peer support program.
•Improve outcomes for those diagnosed with blood cancer by
connecting them with a trained volunteer who
has survived blood cancer and who can offer
short-term one-to-one emotional support.
Blood Buddies is a phone-based peer
support program that matches and connects
those diagnosed with blood cancer (or those
caring for a person with blood cancer) with a
trained volunteer who has had blood cancer
(or cared for somebody with blood cancer).
Coping with a difficult life experience
becomes a little easier for many people
after they talk to someone who has
already been through a similar experience.
National Blood Buddies coordinator, Dr Melissa Oxlad said
Blood Buddies volunteers* offer non-judgmental reassurance,
support, encouragement and hope.
“You can feel less alone and more able to manage your health
simply by talking to someone else who has already been there
and done that,” Melissa explained.
“Blood Buddies volunteers are in a unique position – one that is
quite different from health professionals and support agencies,
in the sort of support and assistance they can provide to others.
2
The aim of this program is to:
•Support and empower families and friends
through these connections.
•Offer hope and encouragement by
speaking to a person who has survived
similar diseases, treatments and situations.
• Reduce barriers that prevent people physically attending peer support events or groups, such as the risk of infection or
geographic location.
• Increase the support options offered by the Foundation.
• Provide training and ongoing support to Blood Buddies volunteers
to safeguard their physical and emotional well-being while they are
contributing to the program.
For more information and to register your interest in
becoming a Buddy, email: [email protected]
or call 1800 007 343.
* No aspect of the Blood Buddies program is intended to guide medical
treatment decision-making.
Leukaemia Foundation MDS News - June 2015
Living Well
NATIONAL MDS DAY – JULY 14
MDS - New Horizons is the focus of
National MDS Day and two international
MDS experts will present the latest
information on MDS research and
clinical trials.
Dr Lewis Silverman, who leads the
Myelodysplastic Syndrome (MDS) program
at Mount Sinai School of Medicine in New
York (U.S.) and the program’s associate
director, Erin Demakos, are both guest
speakers at MDS Day events in Sydney,
Melbourne and Adelaide. One of these events
will be webcast across Australia to other capital cities and regional
centres, so people can view the event from the comfort of their
own homes if they choose.
Providing information on current treatment approaches, new
and future therapies for MDS is the overall objective of MDS
Day, according to the Leukaemia Foundation’s national MDS
coordinator, Samantha Soggee.
“As well, our aim is to improve the physical and psychosocial
quality of life of those living with this rare form of blood cancer,”
she said.
Other aims of this special day – on Tuesday July 14 – are to:
• improve treatment outcomes through side-effects management;
•increase awareness of the services the Leukaemia Foundation
provides to the MDS community; and
•provide opportunities for people with MDS and their families to
interact, form peer support networks and access support.
This year a ‘closed’ MDS Facebook page will be launched as
part of MDS Day and as an outcome following the DiseaseSpecific Facebook Forums Evaluation Survey. Conducted
in November 2014 to assess interest and participation in LFestablished disease-specific Facebook Groups, the feedback
was overwhelmingly in favour of such an initiative.
The Leukaemia Foundation
has a calendar of MDS
Day events (see page 5)
so you can see what is
happening in your region
and we encourage you to
get involved. People with
MDS use the majority of
blood donated to the Red
Cross Blood Service
and this year the
Foundation is
collaborating with
the Red Cross for
National Blood
Donor Week
International guest speaker, Dr Lewis Silverman.
(16-21 July).
How you can get involved in National MDS Day
1. Promote MDS awareness in your community and
recognise National MDS Day by buying a commemorative
‘MDS Aware’ badge for $5 or our ‘MDS’ ribbons for a gold
donation. These can be worn by people with MDS, as well as
their family and friends, and are available from the Leukaemia
Foundation office in your state. Proceeds from badge sales and
ribbon donations support services provided at no cost to people
with MDS.
2. Meet and support others with MDS by attending a
National MDS Day event during July. These
patient-focused activities are held to empower people with
MDS and their families with knowledge and enable them to
connect with others. People affected by CMML also are invited
to attend these events.
3. Increase other people’s general
knowledge and understanding about MDS. Tell at least one person, and possibly
more, about this rare blood cancer during the month of July.
To join the Leukaemia Foundation in promoting and
recognising National MDS Day – by hosting your own event or
speaking at a Foundation event – please contact Samantha
Soggee: [email protected].
The number of Australians living with myelodysplastic
syndrome (MDS) in Australia each year is increasing.
Please take a few minutes to learn about this rare blood cancer.
What is MDS?
How is it treated?
MDS affects the normal production of blood cells
in the bone marrow, leading to a lower number
of blood cells throughout the body. The cause
remains unknown.
Treatments are aimed at slowing the development of
MDS and managing the symptoms. Blood transfusions
are one of the most common treatment therapies.
Who does it affect?
More than 1400 Australians are diagnosed with
MDS each year, equivalent to 30 people every
week. While MDS can be diagnosed at any age, it
is more common in people aged over 60.
What are the
symptoms?
MDS can affect a person in several different ways.
Symptoms are usually related to the lower number
of blood cells in the body, such as red cells (oxygen
carrying cells), platelets (blood clotting cells) and
white cells (infection fighting cells). Common
symptoms are fatigue or lack of energy, shortness
of breath, unexplained bruising and infections.
Other treatments include a ‘watch and wait’
approach, chemotherapy and stem cell
transplantation. Improving the outcomes for
people living with this rare blood cancer has been
the aim of clinical trials into new therapies, as well
as health and supportive care programs.
If you, or someone you know
has MDS, please call
1800 620 420 or visit
www.leukaemia.org.au/mds
WR¿QGRXWDERXWWKHVHUYLFHV
available to support you.
A Leukaemia Foundation initiative for National MDS Day 2015.
The Leukaemia Foundation funds MDS research and provides services at no cost to support people with MDS.
Download this MDS poster from www.leukaemia.org.au.
1800 620 420
www.leukaemia.org.au
About Dr Lewis Silverman and Erin Demakos
The Myelodysplastic Syndrome (MDS) Program at Mount
Sinai School of Medicine in New York (U.S.) is led by Dr Lewis
Silverman who has served as the Principal Investigator for
several national clinical trials exploring treatments for people with
MDS. He also brought forward for FDA approval, the first drug
(azacitidine) that is effective in treating MDS.
Erin Demakos RN, CCRC is the Associate Director of the
Myelodysplastic Syndrome and Myeloproliferative Disease
Program at Mount Sinai School of Medicine. She began
working with Dr James Holland and Dr Lewis Silverman in
1987 and has been in practice since that time in the field of
MDS. She was the lead clinical nurse coordinator on several
National Cancer and Leukemia Group B trials for 5-azacitidine
in patients with MDS (CALGB Study #’s 8421, 8921 and 9221).
3
Research Matters
Q & A: Professor Pierre Fenaux
Dr Pierre Fenaux is Professor of Hematology at the Hôpital
St. Louis in Paris (France) where he opened a new section
for myeloid malignancies in the elderly. He is involved
in clinical and laboratory research in the field of MDS
and acute myeloid leukaemia (AML) and is founder and
chairman of the French-speaking MDS group.
1. How would you describe your role working with
people with MDS?
As a physician, I try to treat patients with the best treatments,
either approved treatments or new treatments we obtain with
clinical trials. The strategy in the French-speaking MDS group
is to work closely with the patient support group which attends
all our scientific meetings. This is important because they can
ask questions about treatments.
2. Do you consider MDS a blood cancer?
MDS is a blood cancer, from a biological viewpoint, because it
can evolve into acute leukaemia, so, in many cases, there is this
risk. On the other hand, there are some low-risk forms, which
rarely evolve into acute leukaemia. There is pressure from some
countries to call it a cancer because if it isn’t, reimbursement of
drugs is more difficult, so we have to balance that. I don’t tell my
patients they have a cancer, I tell them they have MDS and that
there is a potential risk for progression to AML.
3. What are the mechanisms in the bone marrow that
lead to MDS?
We know MDS comes from gene mutations in a certain number
of stem cells and that this leads to a clone (a population of
genetically identical cells arising from a single parent cell) that
progressively overwhelms the rest of haematopoiesis (the
formation of blood cells).
First there are successive
mutations, then the stem
cell clone modifies the
environment, in particular
the immune system and
the vasculature (blood
circulatory system), which
may lead to an immune reaction that may destroy the blood
cells leading to cytopenia (low blood cell counts). With more
mutations and other changes within the cells, there may be
progression to more aggressive forms of MDS and AML.
when chelation
therapy should start.
Generally, I would
say not before 50
transfusions.
5. What are the
main challenges
to curing MDS in
the future?
Currently, the
only cure is
allogeneic stem
cell transplantation with its risks, particularly of transplantrelated mortality and relapse. In addition, not everyone has a
donor and, practically, it is difficult to perform transplantation
beyond age of 70. The hypo methylating agents, in particular
azacitidine, have improved patient survival. In some highrisk patients responses are very long-term and azacitidine
may revert the disease to low-risk MDS – we try to identify
these patients. Other patients have a short response and
unfortunately we have no second-line treatments.
6. There are varied approaches to treating MDS based
on the IPSS classification. What is this and how does it
affect treatment options?
The International Prognostic Scoring System is fundamental
for our management of patients and is also used by health
agencies for their approval of drugs. This scoring system is
based on parameters that can be obtained by conventional
tests, which include blood count and bone marrow examination.
You obtain four prognostic groups: high risk, intermediate-2
risk, intermediate-1 risk
and low risk. High and
intermediate-2 risk are
generally grouped as
higher-risk, and low and
intermediate-1 as lowerrisk. For patients with
higher-risk MDS, we tend to
apply treatments that can have an impact on disease course,
like transplant, chemotherapy and hypo methylating agents.
In lower-risk MDS, we tend to apply treatments that improve
cytopenias, in particular anaemia (low red cell count).
The risk with transfusions is no
longer viral or bacterial infections,
the problem is mainly iron overload.
4. What are the risks of multiple blood transfusions and
how are the symptoms treated?
Blood transfusions are a treatment for anaemia and, whenever
possible, we try to avoid transfusions by using drugs. A
drug is capable of maintaining permanently normal levels of
haemoglobin, whereas transfusions can only increase the
haemoglobin level for a short time, and is associated with
fatigue and reduced physical capacity. In some patients,
unfortunately, drugs don’t work, so they need recurrent
transfusions. The risk with transfusions is no longer viral or
bacterial infections, the problem is mainly iron overload. The
harmful effects are mainly on the heart and generally they
start after 50-60 transfusions. There is discussion as to what
treatment should be performed to prevent iron overload and
4
7. Can you explain more about MDS treatments and
how they work, and how long someone would be on the
treatment and why?
For higher-risk MDS probably the best treatment is allogeneic
stem cell transplantation but not everyone can receive it (e.g.,
patients older than 70, those with comorbidities, or without a
donor). An option in patients without a donor is chemotherapy,
but it doesn’t work well in MDS, so isn’t used much. The
emerging treatments are the hypo methylating agents –
decitabine and azacitidine. Azacitidine showed a significant
improvement of patient survival in clinical trials and is capable
of reverting the disease to an earlier stage, from high-risk MDS
to low-risk MDS. Azacitidine works slowly so you need to be
patient, and prolonged treatment is necessary – two years or
Leukaemia Foundation MDS News - June 2015
perhaps more. In lower-risk MDS patients, the main issue is
anaemia. The drugs available are erythropoietin1 (EPO) and
derivatives. They work in at least half of cases for 2-3 years
or more and are very well tolerated. Patients with deletion
5q do not benefit much from EPO, so we use lenalidomide.
EPO works by stimulating the production of red cells.
Lenalidomide works by reducing the size of the clone that is
the origin of MDS, allowing normal haematopoiesis to recover.
Unfortunately, many patients relapse and become transfusiondependent and there you have the second-line treatments. The
hypo methylating agents, like azacitidine, can improve anaemia
but prolonged treatment is needed. Another second-line
treatment is lenalidomide. In patients in whom stimulation of the
immune system contributes to cytopenia, immunosuppressive
agents can improve cytopenias, in particular anaemia.
8. Is EPO approved for use in MDS in France?
EPO is not approved for MDS in any country to my knowledge.
It is frequently used because it is more or less allowed by
health authorities and reimbursed by insurances. Very often
patients can be treated if they meet some criteria, in particular
very low endogenous serum EPO levels. Two companies
are conducting clinical trials and these will be important to
formalise the approval of EPO, allow reimbursement, and
combination with other drugs.
9. What are the most promising clinical trials underway
at the moment?
What we have to do is to combine hypo methylating agents,
especially azacitidine, with new drugs. It is difficult to say what
is promising. So far we have no drug that has clearly been
shown to be as promising as the hypo methylating agents in
higher-risk MDS. Many are being tested and currently we are
testing several combinations in parallel with azacitidine alone,
but so far no combination has emerged as clearly better. In
patients who don’t respond to EPO and second-line treatments,
the drugs that target the TGF-beta pathway are promising.
Azacitidine and lenalidomide is an interesting combination
being tested in higher-risk MDS, and combining chemotherapy
and lenalidomide may be promising in high-risk MDS with 5q
deletion.
10. What is the controversy, if any, of using GCSF2
therapy for people with low white blood cell counts who
are at risk of infection?
Neutropenia (low counts of a type of white blood cell called
neutrophils) is associated with infections, especially because
in MDS there can be a neutrophil function defect in addition
to the low counts that increases the risk of infection. Patients
who have low-risk MDS and neutropenia rarely have severe
infections, but if they have infections GCSF can be discussed.
The problem with GCSF is the potential increase in the risk of
AML. By contrast, high-risk MDS patients with neutropenia are
at a high risk of infections. Those patients are never treated
just with GCSF because you need other treatments in high-risk
MDS. The question is if we should use GCSF with azacitidine
for instance. It is unclear whether you can reduce the infection
risk or if you can potentially increase the risk of progression to
AML.
1800 620 420
www.leukaemia.org.au
11. When would you offer someone with MDS a bone
marrow transplant and why?
Studies show that in patients who have higher-risk MDS,
there is a clear benefit of transplanting, especially in younger
patients. The risk of transplant-related mortality is outweighed
by the possibility of cure. It could also be useful in patients who
have severe thrombocytopenia (low blood platelet counts) or in
young patients who are heavily transfused in red cells with no
other possible treatments.
12. What are the major issues faced by people with MDS
and how can they live well after diagnosis?
The main issue is the risk of progression to AML, which
should be prevented by adequate treatments like transplant.
In lower-risk MDS, the issue is more that of cytopenias and
how to prevent them, especially anaemia, as it is associated
with poor quality of life. You can live well by having a treatment
that improves your cytopenia or makes the disease regress
to an earlier stage (e.g. azacitidine). The other aspects are
psychological. If your impression is that you have a cancer,
a chronic disease, it is distressing - another argument not to
always say to patients they have a cancer because for many
MDS evolves quite slowly. This explains the importance of
patient support groups and we encourage patients to participate.
Erythropoietin is the hormone that acts in the bone marrow to increase
the production of red blood cells.
1
Granulocyte colony stimulating factor – stimulates the bone marrow
to produce granulocytes and stem cells and release them into the blood
stream.
2
NATIONAL MDS DAY 2015 EVENTS
NEW SOUTH WALES & AUSTRALIAN CAPITAL TERRITORY
14 Jul 10am- MDS Day seminar, Mayfield
12pm (Vicki Emmeriks 0412 706 784)
16 Jul
MDS Day seminar, Sydney. Speakers:
Dr Lewis Silverman, Erin Damakos
(Sally Nicholson 02 9902 2207)
30 Jul
MDS Day seminar, Coffs Harbour
(Chris Hobson 02 6659 2011)
VICTORIA
14 Jul
MDS Day seminar, Melbourne. Speakers:
Dr Lewis Silverman, Erin Damakos
(Philippa Ransom [email protected])
WESTERN AUSTRALIA
14 Jul 11am- MDS Day seminar, Perth
2pm
(Tanya Harris [email protected])
SOUTH AUSTRALIA
15 Jul 10am- MDS Day seminar, Adelaide. Speakers:
2pm
Dr Lewis Silverman, Erin Damakos
(Andrew Read [email protected])
Northern Territory
15 Jul 11am- MDS Day seminar, Darwin
2pm
(Matthew Eby [email protected])
TELEPHONE FORUM 8 Jul Clinical psychologist,
Lynda Katona: The uncertainty of living with a chronic blood
cancer & management/coping strategies.
(Samantha Soggee: [email protected])
For the most up-to-date list of National MDS Day events, visit
www.leukaemia.org.au.
5
My Journey
Continued from page 2
“I have never regretted my decision to have the transplant and
am so grateful to the fantastic team of doctors who made it
happen. Because the decision to have the transplant was mine,
I was determined not to let down all the wonderful people who
supported me in my decision.
“I suffer from GVHD in my eyes, so Carol does most of the driving. My
quality of life has greatly improved with the help of an optician who
has an interest in extreme
dry eye. I wear scleral lenses
which have been totally life
changing. They prevent my
eyes from drying out so I
can now watch some TV and
read a little. I have serum tears made up for me from my own blood
and they’ve made quite a difference too. I also have mouth ulcers
and suffer from a dry mouth and continue with ongoing monitoring
to keep the GVHD under control.
your health care professionals. I draw inspiration from my wife
who is such a positive person. Sometimes, when I am down,
she picks me up and together we get on with it.
“Words people have said that are the least helpful are: ‘I know
how you feel’. No, they don’t know how I feel. But at the coffee
sessions run by the Leukaemia Foundation we are all in the
same boat, we understand each other and there’s a nice
camaraderie and a warm
and friendly atmosphere.
Last week I heard I’m in remission...
it’s a good feeling.
“In September 2013 I was planning to celebrate my two years
post transplant anniversary but ended up in hospital for a
month with two viruses – the flu and pneumonia. My breathing
has not been the same since then. I am limited as to what I can
do and it doesn’t take too much for me to run out of puff. While
I don’t have the same energy as I had before, and find this
somewhat frustrating, I am stronger each day.
“What really helps is being told – ‘you’re looking good, keep up
the good work’. My advice to others is to stay positive, surround
yourself with positive people, and have a good relationship with
“I go regularly to the coffee
meetings in Adelaide and
to another blood cancer
group at Strathalbyn. These
have really helped me with my self-esteem and confidence. It is
nice to be able to talk to people who, while not having the same
condition, have had similar experiences. Our thanks go to the
Foundation’s blood cancer coordinator, Andrew Read, for being
such a great support to us. A couple of years ago, my daughter,
Kelly, participated in the World’s Greatest Shave and raised quite
a bit of money for the Foundation.
“I’ve just celebrated my 70th birthday. Life is still a challenge,
but definitely worth living. My blood tests and medical
appointments are now down to every six weeks, so in between
these, we can get away.
“I love the outdoors and being in the bush and would like to
be able to get away for short breaks more often and do some
more fishing! We’ve started getting out again and, having sold
our van and 4WD, we now stay in cabins or rent a house. Our
golden retriever, Bella, travels with us as much as possible.
She has been such a comfort for both of us.
“Right now what I am looking forward to is good health and
enjoying each day as it comes. And I hope to take some art
classes and participate in the local Men’s Shed.
Last week, I heard from the haematologist that I’m in remission.
Evidently this has probably been the case for a while, but it was
the first time I’ve heard him say it – it’s a good feeling.”
At Rawnsley Park Station in the Flinders Ranges where Malcolm waited for his first haematologist appointment – “I told the doctor that I
may as well wait up there as on the sofa at home!”
6
Leukaemia Foundation MDS News - June 2015
Living Well
CANCER RELATED FATIGUE
By Dale Ischia
ESSA accredited Exercise Physiologist and ACSM cancer
exercise trainer
The most common and perhaps most debilitating of all
the blood cancer treatment side-effects is cancer related
fatigue (CRF).
Management tools for CRF
You can use various tools to help
manage CRF.
•Relaxation/distress management.
Join a support group. Practise
daily relaxation/meditation.
This daily lack of energy and whole-body fatigue is not relieved
with sleep, nor is it the result of over exertion. This fatigue
makes it difficult to cope with the normal demands of daily
living due to a total lack of energy. CRF is not to be confused
with tiredness that is often felt at the end of a long day, where
energy is restored after a good sleep.
•Pacing/energy conservation.
Schedule your day/week to
work out how much energy you
can ‘spend’. Ensure a balance
between energy conservation,
restoration and expenditure.
CRF typically displays the following characteristics:
•Plan a rest period during the day.
• generalised weakness or feelings of heaviness;
•reduced ability to concentrate and perceived lack of short-term
memory;
• reduced motivation or interest in engaging in usual activities;
• difficultly sleeping;
•Keep a diary for a week
recording fatigue levels,
activity, rest and energy
expenditure.
• fatigue that is not relieved by sleep; and
•Eliminate any activities that
are causing you to ‘crash’ the most.
• difficulty completing normal daily tasks due to fatigue.
• Distraction. Listen to music, watch a funny movie, laugh.
This form of fatigue usually diminishes one year after treatment
finishes, however, 20-30% of people with CRF experience
persistent fatigue that lasts five years or longer1.
•Perform physical activity that is consistent and sustainable.
A graded exercise program is the best management for
fatigue disorders.
There are many possible causes of fatigue that should be
assessed by your treating practitioner, such as:
•Nutrition. Eat a healthy, balanced diet that regulates blood sugar
levels, so you are not experiencing extreme highs and lows.
• blood levels, e.g., anaemia;
•Sleep hygiene. Go to bed and wake at the same times each
day, reduce/limit daytime naps, consume caffeine only
before 11am, no screens one hour before bed.
• various causes of anaemia, such as nutritional deficits;
•hypothyroidism (an underactive thyroid) – a common postradiation treatment to lymph nodes in the neck;
• the cancer itself, especially if it causes anaemia;
• cancer treatments:
i.chemotherapy – experience varies, but fatigue can last
a couple of days and can extend beyond completion of
treatment
ii.radiation – has a cumulative effect, usually lasting 3-4 weeks
after treatment ends
iii. hormone treatment – can cause fatigue while on treatment
iv. bone marrow transplant – fatigue can last up to 12 months
•medications, such as antihistamines, antidepressants, narcotics,
and anti-nausea;
•depression and feelings of helplessness – it is common to
confuse fatigue and depression, and it can be difficult to
distinguish these conditions;
• depression can further exacerbate fatigue;
• pain;
• Adequate pain control.
•Get out into nature. Go for a walk in the morning sun. Enjoy
morning sun on your face for 20 minutes. This will improve
your mood and regulate your circadian rhythm.
The fatigue cycle
Too much rest causes your muscles to reduce in size and strength,
which makes it harder for you to move. As a result, you become less
active which causes more deconditioning, fatigue and weakness.
The cycle of deconditioning can be reversed – by exercise, which
is the best way to cope with fatigue. It is something you can control
and there are no bad side-effects. Exercise will have positive effects
on your physical and psychological self.
Exercise
Exercise is now recommended as a part of every cancer
treatment plan. Research has found it has no harmful effects
on patients with cancer and has shown that those who exercise
regularly experience less CRF.
Useful link
• anxiety/stress;
http://my.clevelandclinic.org/health/diseases_conditions/
hic_Cancer_Overview/hic_Cancer-Related_Fatigue
• sleep disturbance;
• deconditioning;
• inflammation.
Bower JE. Cancer-related fatigue-mechanisms, risk factors, and
treatments. Nature reviews Clinical oncology. 2014;11(10):597-609.
The good news is that deconditioning, depression, pain,
inflammation, anxiety and sleep disturbance can all be helped
by exercise.
In the next issue of MDS News, Dale Ischia
(www.movingbeyondcancer.com.au) explains how exercise
can be used to reduce CRF.
1800 620 420
1
www.leukaemia.org.au
7
diary dates
Education & Support
NEW SOUTH WALES & AUSTRALIAN CAPITAL TERRITORY
Sydney Metro
4 Jun
2-4pm
12 Jun 10am-12pm
10am-12pm
24 Jun 2-4pm
29 Jun 10-11.30am
21 Jul 10am-12pm
New England
1 Jun
2-3.30pm
3 Jun
2-4.30pm
Hunter
2 Jun
10am-12pm
9 Jun
10-11.30am
Penrith Blood Cancer Information & Support Group (also 6 Aug,
1 Oct)
Concord Blood Cancer Education & Support Group
Liverpool Blood Cancer Education & Support Group
Randwick Blood Cancer Education & Support Group (also 29 Jul)
Kogarah Blood Cancer Education & Support
Artarmon Blood Cancer Education & Support Group
3 Jun 11am-12.30pm Frankston Carers Support Group
4 Jun 2-3.30pm
MDS Support Group, Preston
17 Jun 10.30am-12pm Eastern Suburbs Blood Cancer Support Group, Croydon
(also 16 Sep)
19 Aug 10.30-12pm
Brighton Blood Cancer Support Group
5 Sep 9.45am-5pm
Annual Blood Cancer Conference
15 Oct 10.15-11.45am Bone Marrow & Stem Cell Transplant Support Group, Hawthorn
Armidale Blood Cancer Information & Support Group (also 6 Jul,
3 Aug, 7 Sep, 2 Nov)
Tamworth Blood Cancer Education & Support Group (also 1 Jul,
5 Aug, 2 Sep, 7 Oct, 4 Nov)
16 Jun 3.30-5pm
Geelong Blood Cancer Support Group (also 14 Jul 5.30-7pm)
29 Jul 10.30am-12pm Mornington Blood Cancer Support Group
11 Jun 11am-12pm
Newcastle Blood Cancer Education & Support Group (also 7 Jul,
4 Aug, 1 Sep, 6 Oct, 3 Nov)
Port Stephens Blood Cancer Education & Support Group
(also 11 Aug, 13 Oct)
Mudgee Blood Cancer Information & Support Group
2 Jun 10am-12pm
16 Jun 10am-12pm
Wollongong Blood Cancer Education & Support Group
Bowral Blood Cancer Education & Support Group
Illawarra & Shoalhaven
Northern Rivers
18 Jun 10am-12.30pm Tweed Heads Blood Cancer Education & Support Group (also 20 Aug)
27 Jun 10am-12.30pm Lismore Blood Cancer Education & Support Group (also 27 Jul)
Mid North Coast
15 Jun 1-3pm
Port Macquarie Blood Cancer Education & Support Group
25 Jun 10.30am-12.30pm Coffs Harbour Blood Cancer Education & Support Group
21 Jul 11.30am-1pm Taree Blood Cancer Information & Support Group (also 22 Sep, 17 Nov)
Central Coast
10 Jun 11am-12pm
25 Jun 10-11.30am
VICTORIA
Melbourne Metro
Cowra Cancer Education & Support Group (also 23 Sep, 28 Oct)
Gosford Blood Cancer Education & Support Group (also 30 Jul,
27 Aug, 24 Sep, 29 Oct, 26 Nov)
Mornington
Barwon South West
7 Jul
2.30-3.30pm
8 Jul
1.30-3pm
26 Aug 1.30-3pm
Grampians
2 Jul
21 Jul
10-11.30am
10-11.30am
10am-12pm
15 Jun 1.30-3.30pm
Hume
Perth Metro
9 Jun 10am-12pm
15 Jun 1-3pm
1 Jun
Peel
9 Jun 10am-12pm
17 Jun 10.30am12.30pm
15 Jul 10.30am12.30pm
Central West & Far West
2 Jun 1.30-3pm
Cobar Blood Cancer Education & Support Group (also 1 Sep)
3 Jun 10.30am-12pm Dubbo Blood Cancer Education & Support Group
4 Jun 10.30-12pm
Orange Blood Cancer Education & Support
10 Jun 10.30-12pm
Bathurst Blood Cancer Education & Support Group
9 Jul
11am-12pm
Parkes Blood Cancer Education & Support Group (also 10 Sep)
SOUTH AUSTRALIA
9 Jun 10am-12pm
MDS Support Group, Northfield (also 10 Aug, 12 Oct)
11 Jun 10.30amSouthern Support Group, Old Reynella (also 9 Jul, 13 Aug, 10 Sep,
12.30pm
8 Oct,12 Nov)
17 Jun 11am-1pm
Strathalbyn Support Group (also 15 Jul, 19 Aug, 16 Sep, 21 Oct,
18 Nov)
23 Jun 10-11am
Barossa Support Group (also 28 Jul, 25 Aug, 22 Sep, 27 Oct,
24 Nov)
28 Jul 10am-12pm
Men’s Support Group, Northfield (also 29 Sep, 24 Nov)
northern territory
4 Jun 10-11.30am
Darwin Support Group, Coconut Grove (also 2 Jul, 6 Aug, 3 Sep, 1 Oct)
25 Jun 10-11.30am
Alice Springs Support Group (also 30 Jul, 27 Aug, 24 Sep, 29 Oct,
26 Nov)
21 Jul 6-8pm
Social Cinema Night & Support Group, Palmerston (also 15 Sep)
Tasmania
9 Jun 10.30am-12pm Northern Tasmania Blood Cancer Support Group,
Launceston (also 11 Aug, 13 Oct)
10 Jun 11am-12pm
Southern Tasmania Late Effects of Blood Cancer Treatment
Bendigo Blood Cancer Support Group (also 10 Aug, 14 Sep,
12 Oct)
Navigating the Health System, Mildura
9 Jun 10-11.30am
Hume Blood Cancer Support Group, Echuca
WESTERN AUSTRALIA
ACT & Southern NSW
Goulburn Blood Cancer Information & Support Group (also 13 Jul,
10 Aug, 14 Sep, 12 Oct, 9 Nov)
Canberra Blood Cancer Education & Support (also 14 Jul)
Batemans Bay Blood Cancer Education & Support Group
(also 19 Aug, 21 Oct)
Moruya Blood Cancer Education & Support Group (also 16 Sep,
18 Nov)
Ballarat Carers Support Group
Ballarat Mancave (also 17 Nov)
Lodden/Mallee
13 Jul
27 Jul 4.30-6pm
Aug
TBA
26 Oct 4.30-6pm
11am-1pm
Hamilton Blood Cancer Support Group (also 22 Sep)
Warrnambool Blood Cancer Support Group (also 23 Sep)
Colac Support Group
Perth education session: Cooking for chemo
Perth Metro Blood Cancer Support Network (also 20 Jul, 17
Aug, 21 Sep, 19 Oct)
Bassendean Accommodation Support Group (also 24 Aug)
Conference for People Living with a Blood Cancer, Perth
Regional People Living in LF Accommodation Support Group
18 Jun 10.30am-12pm Mandurah Blood Cancer Support Network (also 16 Jul, 20
Aug, 17 Sep, 15 Oct)
19 Jun 1-2.30pm
Port Kennedy Blood Cancer Support Network (also 28 Aug,
23 Oct)
Bunbury
17 Jun 10.30am-12pm Bunbury Regional Support Network (also 19 Aug, 16 Sep, 21 Oct)
Great Southern
10 Jun 10am-12pm
Queensland
Albany Blood Cancer Education Session
Brisbane Metro
18 Jun 10am
4 Aug
TBA
5 Sep
TBA
Caring for the Carer, The Role of the Carer (also 25 Jun, 2
Jul, 9 Jul), Dutton Park
Nuts and Bolds of Allogeneic (Donor) Transplants, Dr James
Morton, Dutton Park
It’s All About Me (Part 1), Dutton Park (also 12 Sep, Part 2)
Regional
12 Jun 2-4pm
Coffee cake and chat, Gold Coast (also 14 Aug; 9 Oct; 11 Nov)
NATIONAL TELEPHONE FORUMS
MDS Telephone Forums are held regularly for patients in regional and
remote areas, and metropolitan patients who have difficulty accessing the
Leukaemia Foundation’s regular education activities. Contact Samantha
Soggee on 03 9949 5824 or [email protected] for the dates, to find
out more, and to register.
Visit www.leukaemia.org.au for our latest Education and Support
Program Event Calendar. To register for an education or support event,
freecall 1800 620 420 or email [email protected].
OUR VISION TO CURE AND MISSION TO CARE for you
The Leukaemia Foundation is the peak body for blood cancer in Australia,
funding research and providing free services to support people with
leukaemia, lymphoma, myeloma and related blood disorders.
Our free services include emotional support, accommodation,
transportation and practical assistance. We also fund research into
cures and better treatments.
We receive no ongoing government funding and rely on the continuous
support of individuals and corporate partners to provide our services
and to fund our National Research Program.
8
To find out more about how we can help you:
Freecall 1800 620 420
Email: [email protected]
Mail: GPO Box 9954 in your capital city
Website: www.leukaemia.org.au
Leukaemia Foundation MDS News - June 2015
Disclaimer: No person should rely on the contents of this publication without first obtaining advice from their treating specialist.