Download ALL NEWS - Leukaemia Foundation

ALL NEWS
FOR PEOPLE WITH
ACUTE LYMPHOBLASTIC
LEUKAEMIA (ALL)
& THEIR FAMILIES
JANUARY 2015
TAYLOR AND JASMINE SHARE A SPECIAL BOND
Four year-old Taylor Garrett is insistent – she never wants
to have her hair cut again. In fact, she wants to grow it as
long as Rapunzel’s!
And yet, back in July, when her friend, Jasmine Robinson, 7, had
her head shaved by her dad, Taylor had him shave her hair off too.
At the time, the two girls’ hair was falling out for the first time
during treatment for ALL.
Taylor and Jasmine were diagnosed in May. They met after
both were airlifted to Sydney for treatment at the same hospital
and have remained firm friends since, despite their age
difference and their homes being far away from each other.
Taylor and her mum, Rachelle Mintern, are from Woolgoolga,
north of Coffs Harbour, and Jasmine’s parents, Vanessa and
Matt, and brother Blake, live in Canberra.
Taylor and Jasmine spent more than five months together in
Sydney undergoing the same intensive treatment regimen and
staying at the same accommodation centre.
“They just hit it off,” explained Jasmine’s mum, Vanessa.
“Jasmine enjoys mothering Taylor and looking after her. They
have a special bond because they are going through the same
thing, with the normality of having a friend.
“They play like normal kids, but they play doctors a lot and
role play all the things that happen to them during the day, like
putting in cannulas,” Vanessa said.
The girls, who are only two weeks apart in their treatment regimen,
now spend four days in Sydney followed by 10 days at home.
“Now we’re coming and going from home, sometimes we’ll go to
Sydney half a day earlier, so Taylor and Jasmine can catch up,”
said Taylor’s mum, Rachelle.
“Their friendship is a distraction and helps them forget what’s
happening. They comfort each other and don’t feel like it’s only
them going through this.
Continued on page 6...
IN THIS ISSUE
Study shows dramatic results ................ 2
What causes ALL? ................................... 2
Eleven Qs: Dr Gökbuget.......................... 3
Dylan’s dream ........................................ 4/5
Readership survey ................................... 7
Eight Seasons book................................. 8
Both diagnosed in May 2014, Jasmine Robinson and Taylor Garrett have a special bond from going through the same experiences together.
1800 620 420
www.leukaemia.org.au
1
ALL STUDY SHOWS DRAMATIC RESULTS
An investigational immunotherapy, CTL019 – a
type of chimeric antigen receptor (CAR) therapy,
genetically engineers patients’ immune T-cells
and reintroduces them into the body to kill
cancer cells.
Willcox, director of the Cancer Immunology and
Immunotherapy Centre in Birmingham, UK.
“It’s not clear whether this represents a ‘true’ cure,
or a bridge to other potential cures such as stem cell
transplants,” Professor Willcox said.
A study published recently in the New England Journal
of Medicine showed that 90% of children and adults
with ALL achieved complete remission after receiving
this experimental, personalised cellular therapy.
Researchers at the Perelman School of Medicine at
the University of Pennsylvania, led by Dr Carl June*,
and the Children’s Hospital of Philadelphia (CHOP),
led by Dr Stephan Grupp, reported that 27 of the first
30 people on the study achieved complete remission Dr Carl June.
after being treated with genetically engineered T-cells.
Dr Grupp said the results were “unprecedented”.
“The patients who participated in these trials had relapsed
as many as four times, including 60% whose cancers came
back even after stem cell transplants. Their cancers were so
aggressive they had no treatment options left,” he said.
However, although the findings were “dramatic”, the therapy
was complex to perform, had serious side-effects and raised
several unanswered questions according to Professor Ben
The treatment involves taking T-cells from patients and
genetically engineering them to produce a modified
protein known as a chimeric antigen receptor.
This receptor is designed to bind to a second
protein, known as CD19, found on the surface of
immune cells called B-cells, out of which several
types of leukaemia can develop.
Once the modified T-cells are infused back into the patient they
rapidly multiply, producing an army of tumour-killing cells that
set about attacking the cancer.
The U.S. Food and Drug Administration has granted
Breakthrough Therapy designation for clinical trials of this
approach to treat paediatric and adult ALL patients who have
not responded to, or who have relapsed after, treatment with
conventional therapies.
* Dr June was an international speaker at the Leukaemia Foundationsponsored new Directions in Leukaemia Research 2014 meeting on the
Sunshine Coast.
WHAT CAUSES ALL?
ALL, which makes up around 10% of all leukaemias, is a
rare cancer and the causes of ALL remain unknown.
A national epidemiological study, called The Forgotten Cancers
Project, is being conducted by the Cancer Council of Victoria to
understand the roles of genes, lifestyle and early life environment
as causes of less commonly occurring cancers, such as ALL.
The study is collecting a broad range of health and lifestyle
information from people diagnosed with ALL and the other blood
cancers. The same sort of information also will be collected
from a family member of each participant.
It is a case-control study because information from people
diagnosed with ALL who take part will be compared with
information from people who are not affected by this disease.
The aim being to identify any differences between the people
with ALL and the people without, to see whether the differences
may be associated with development of cancer.
The study is seeking a total of 30,000 participants (15,000
people with cancer + 15,000 people without cancer). People who
were 18 years or older when diagnosed can register to take part
in the research.
The Leukaemia Foundation supports this research project and
encourages people with ALL to take part.
According to the Foundation’s Head of Support Services,
Anthony Steele, it is important for blood cancers to be well
represented in the study.
“If we can learn the risk factors of ALL, either genetic or
lifestyle, we may be able to prevent it occurring in future
generations,” Anthony said.
“We believe it is in the best interests of those with ALL to take
part in this study. The more people who take part, the stronger
the research will be.”
To take part in the study, phone 1800 068 289,
email [email protected] or visit
www.forgottencancers.com.au.
CANCER FOLLOW-UP MISSED
Many childhood cancer survivors miss out on critical
follow-up care as adults.
The recent Clinical Oncology Society of Australia’s annual
scientific meeting was told 40% of young adults didn’t attend
surveillance medical appointments and 60% didn’t understand
the risks of being treated for cancer as a child.
Assoc. Professor Richard Cohn, director of the survivorship
program at the Kids Cancer Centre (Sydney’s Children’s Hospital),
2
said a survey of 270 survivors found barriers to accessing followup care included hidden financial costs of childcare or missing
work. Others were unaware of late-effects clinics.
He said it was possible to identify patients who should
receive intense follow-up screening, based on a higher risk
of secondary cancers after radiation, and infertility or cardiac
problems based on the medication they received.
Read more about late-effects on page 8.
Leukaemia Foundation ALL News – January 2015
Research Matters
ELEVEN QUESTIONS: DR NICOLA GÖKBUGET
Dr Nicola Gökbuget (pictured) was an international speaker
at the New Directions in Leukaemia Research 2014 meeting
on the Sunshine Coast earlier this year, which was hosted
by the Leukaemia Foundation. Dr Gökbuget is head of
the Study Center of the Department for Internal Medicine
II, Hematology/Oncology at the University Hospital in
Frankfurt, Germany. For more than 20 years she
has served as Coordinator of the German
Multicenter Study Group for Adult Acute
Lymphoblastic Leukemia (GMALL). Her
scientific interest focuses on clinical
research in adult ALL including
diagnosis, therapy, risk stratified
treatment, late effects, quality of
life, management of relapsed/
resistant disease and
evaluation of new drugs.
1. What is the GMALL?
This is a national study
group in Germany with
140 participating hospitals.
Founded 30 years ago, the
GMALL’s aim is optimising the
treatment of ALL. The Group
has conducted many clinical
trials for adult ALL and has
the world’s largest database
of adult ALL patients, having
collected data from more than
6000 patients. ALL is a rare
disease and many hospitals
treat very few patients. The
Group has educational study
group meetings, provides
treatment protocols, is in
close contact with all the
hospitals and is available
to answer questions about
treatment or complicated
patients. The Group
also learns from these
problems and further
develops our protocols.
2. Why hasn’t the
improvement in survival
rates for people with adult
ALL kept pace with those
for paediatric ALL?
The outcome of ALL is
strictly age dependent, probably because ALL is cured mainly by
intensive chemotherapy, which is not as easily tolerated in adult
patients who have more complications and treatment delays,
etc. The dose intensity that can be achieved in children is not
similar in adults and it decreases with age. More adult patients
cannot receive the treatment and there is more mortality during
chemotherapy. As well, with increasing age, some prognostic
factors increase, further contributing to the poor outcome of older
patients. Most adult study groups, like ours, use paediatric-based
protocols, with modifications to make them tolerable which has
significantly improved the outcome.
3. In Australia, cancer registries report on cancer incidence
and cancer deaths. Explain your experience working with the
cancer registry in Germany?
We don’t have a really good National Cancer Registry in
Germany. Each German state has a registry but the cancer
information collected is superficial and doesn’t fit with the
data you need to know for leukaemia, so you cannot
really analyse this information, which is why our group
created our own registry. We try to register all adult
ALL patients in our participating hospitals. Of
course, we have no information on patients who
do not reach these hospitals.
4. How has working with more
comprehensive cancer data improved
your ability to research blood cancers?
We started our registry four years ago
and what is important is the information
we are building up on patients who do
not fulfil the entry criteria for clinical
trials. Patients with a previous
cancer or co-morbidities are
not eligible for trials, but all
the entry criteria
information is
included on the
registry. Very
interesting data
on subgroups
will arise from
it, e.g., ALL as a
secondary cancer,
after breast cancer,
is increasing.
5. Is having a
comprehensive
cancer registry vital
for any country
seriously dedicated
to curing blood
cancers?
Of course the
cancer registry
is important – to
have an overview
on the whole
healthcare system
in a country. But blood cancers are not considered in enough
detail in many of these registries. I recommend haematologists
collaborate closely with the people defining the cancer
registries, particularly the documentation. In the state of Hesse,
where I live, the documentation used for the cancer registry
was found unsuitable for ALL. So, one has to work with the
registry to get appropriate information for the different diseases
because each cancer is very different, and only if we modify
the registries in this way, will they be helpful for us.
Continued on page 7...
1800 620 420
www.leukaemia.org.au
3
My Journey
DYLAN’S DREAM – TO PLAY COMPETITIVE HOCKEY AGAIN A
My name is Dylan Turner and I am a 15 year-old boy living
with cancer.
I was diagnosed with high-risk ALL in May 2013, when I had to
stop going to school every day, move 200km from Bunbury to
Perth and endure more medical procedures than most people
have to in a lifetime. Before I got sick I was an aspiring athlete
who was chosen to represent Western Australia. After I was
diagnosed all that changed.
I started playing field hockey with the Marist Hockey Club in
2011. After one training session I loved it. During my first season
I met Tristan Clemons, a goalkeeper for the Australian men’s
hockey team, the Kookaburras, and later learnt a lot from him in
a goalkeeping coaching clinic session he taught in Bunbury.
By 2012, my second season, I was asked to play in the men’s A
grade competition. After playing in the WA State Championships
I was invited to try out for
the WA State Under 13
Boy’s Hockey squad. Not
only was I thrilled to be
selected, I was excited to
begin my dream of being
a state-level hockey
goalkeeper. In October
2012, our squad of 20
players went to Nowra
(NSW) to compete in
the Australian National
Hockey Championships.
cracking jokes and using me as friendly punching bag was now
giving me hugs and repeatedly asking me how I was feeling. He
looked worried. I remember my sister looked like she had been
crying. My sister-in-law was also there with us. Both my parents
were busy signing papers with the doctors and the nurses.
The reality of my situation hit hard when I was told I had to be
close to PMH at all times because I was a high-risk (of infection)
patient. That meant we had to live in Perth in a temporary home
for the next 10 months and I spent many weeks in hospital.
My mum gave up work as a full-time teacher to be my carer.
One of the hardest things was that my dad had to continue
working in Bunbury and could only come to Perth on the
weekends. I hated when he had to leave because I really
missed him. We would spend lots of time on the phone talking
to him. After six months in Perth the doctors let me go home to
Bunbury for two nights only.
Cancer is very
scary because I
could die and I had
never thought of
that before. I was
only 13 when I was
diagnosed and I
also developed
diabetes, so had
to learn to live
with that too. In
the first month, I
came very close
to dying when my
body couldn’t fight
a bacterium. The
head doctor at
PMH told me all
this nine months
later and I was
stunned.
When I got diagnosed I
didn’t know what cancer
was, but then I saw mum
and dad’s reaction and
I knew it wasn’t good.
They were shocked and
upset. The paediatric
doctor at the Emergency
Department at the
Bunbury hospital told
I often ask my
us blood tests showed I
mum why did I
had ALL. We didn’t know An action shot of Dylan Turner in 2012, prior to his diagnosis with ALL.
get cancer? She
what it was. The doctor
doesn’t have the
told us to drive straight to the Princess Margaret Hospital (PMH)
answer. I don’t know why I got it but I won’t let it get in the way
in Perth.
of my dream. I want to beat this and get fit enough to play
hockey and one day play for Australia.
Driving back to our house to pack, I asked my mum what ALL
was. She hesitated before she told me it was cancer. I didn’t
The chemotherapy puts poison in my body and it’s hard
really know what cancer was and I didn’t believe the doctor, but I
to imagine how anything could be worse than throwing up
knew I felt too unwell to argue. I had been sick for over a week.
everything you eat, having constant headaches, losing the
ability to taste my food, being in the unlucky percentage of
I asked Mum how long we were going to be staying in Perth and
people who develop steroid induced diabetes and having up to
she said to pack for a week, so that’s all I packed for. It was a
six insulin shots day and night. But the worst of all was when my
very quiet trip to Perth. When Dad, Mum and I arrived at PMH
hair started to fall out. I couldn’t hide it any longer, I was sick. I
we sat in silence waiting for my older brother and sister to come
used to wear a beanie all the time or a hat.
and meet us in the waiting room. It was close to midnight when
the staff took us straight to the oncology ward so the specialist
I lost my confidence the more I got sick. I didn’t want to see
doctors could see me.
my friends because I was sure they would stare at me and be
different around me. They had a normal life and I didn’t any
Being in that hospital room was surreal. Everything was unfamiliar
more. I did lose some of my friends because being so far away
and I could tell this was serious. My brother, who is usually
4
Leukaemia Foundation ALL News – January 2015
N AND ONE DAY PLAY FOR AUSTRALIA
they couldn’t just drop in to visit and most of the time I only
wanted my family to be with me. My older brother,
sister and sister-in-law always made hospital a
happy, fun time filled with jokes, playing Monopoly
and many other games.
would drive up to stay with us on the weekend. I
missed my home but with most of my family in
Perth, that is where my home was to me.
In March 2014, my oncologist gave me permission
to move back to Bunbury and continue my oral
chemotherapy treatment and steroids at
home. It made me extremely happy to
finally go home. For so long, this was
the day I had been waiting for. I am in
long-term maintenance now and still
have 21 months of treatment to go.
The side-effects of having cancer continued with
the doctors deciding to put a feeding tube
down my throat because I had lost over
20% of my original body weight. I couldn’t
hide this one with a hat or beanie, I just
had to put on a brave face and get used
to people staring at me. I was very
pale from the constant chemotherapy,
steroids, painkillers and the many
blood transfusions, platelets and
haemoglobins. In between all this
I had an operation to have my port
inserted in my chest to help access my
veins and for intravenous treatments. I’ve
had numerous lumbar punctures and a few
bone marrow aspirations (biopsies) too.
Every 28 days we travel back
to PMH to have intravenous
chemotherapy, lumbar punctures,
physical examinations and any other
treatment that needs to happen
according to the protocol and I’ve
had an intravenous immunoglobulin
transfusion to boost my immunity. As long as
I’m not neutropenic, or sore from the steroids,
I can go to school, but I have to be careful I’m
not in contact with people who are unwell or
sick because my immunity is low. I also have to
stay out of the sun because I can easily get skin
cancer. I can’t swim in the river and I can’t go
near pets or animals.
I couldn’t go to (my) school anymore, I
didn’t want to be involved in the school on
the ward because I didn’t feel well and I
didn’t want to be tutored or do my schooling
through Schools of Isolated and Distance
Dylan, just after his diagnosis,
Education like my family encouraged me to
with Kookaburras’ goalie and
My mum helps to tutor me at home and I have
do. Tristan Clemons contacted my parents
mentor, Tristan Clemons.
managed to keep up with most of my set
and offered to tutor me. When I was well
homework assignments.
enough he would sometimes do some light training with me. I
My oncologist is very supportive of my dream to eventually play
appreciated these times but I just wanted to go back to how my
hockey competitively again. I haven’t played a game of hockey
life was before and I wanted to be with my mates again. I was
since I was diagnosed, but I really want to.
often depressed and afraid.
We lived in a Leukaemia Foundation unit in Bassendean for 10
months. My dad tried to work in Bunbury during the week and
I now realise, I am a survivor after all I have been through.
No one knows what my future holds or what I am capable of,
but I have my dream of regaining my fitness, being a
goalkeeper again, playing for WA and ultimately the
Kookaburras.
DYLAN DESCRIBES OUR PATIENT
AND FAMILY ACCOMMODATION
Excerpt from a piece of Dylan’s school assessment
Dylan, second from the right, with his family, from left, sister-in-law, Lisa, Fran his
mum, brother Aaron, sister Jerrilee, and dad, Glenn at Broome in September 2014.
1800 620 420
www.leukaemia.org.au
“I am sitting in a wheelchair at the dining room table
in my temporary home in Perth. My new home is a
unit in Bassendean, 30 minutes from the hospital. The
units are neat and tidy with well maintained gardens.
It’s surprisingly quiet living here in this part of the city.
My unit is surprisingly comfortable. It has an open
plan kitchen, dining and lounge area looking out to an
enclosed patio and outdoor living area. Fortunately, it
has a good size TV that I can also play my games on.
Mum brought her favourite Aztec carpets from
Bunbury and they cover quite a bit of the floor. She
also brought up a lot of board games and jigsaw
puzzles. Most of my family is in Perth and wherever
my family are is home to me.”
5
My Journey
Continued from page 1
“They have become good friends and play really well together.
Jasmine is the older sister role,” said Rachelle.
“When we started making trips home, that’s when Taylor started
worrying about her hair – asking ‘will my hair grow back?’ and
‘will it fall out again?’. She gets self conscious when she’s back
in normal society.
“But when she’s at the hospital, her hair doesn’t worry her so
much. All the kids look the same, with puffy cheeks from steroids
and no hair.”
Jasmine, who’s in year one, hasn’t attended school much since
her diagnosis but her teacher has sent her work and visited her
twice at the hospital in Sydney.
“She’s not behind but she’s not top of the class,” Vanessa
explained.
“I just want to get her better, and at the moment it’s hard with the
steroids. Her emotions are all over the place.
“But we’ve been pretty lucky with her treatment. She’s followed
the textbook and other than four admissions for chemo, she
spent three weeks in hospital when she got a lung infection,
which was a bit of a setback.
“She has amazed me. She is a headstrong little girl who has
taken it all in her stride.”
Soon after returning to Canberra, the Robinsons took part in the
Light the Night walk and fundraised for the Leukaemia Foundation.
Rachelle said Taylor had grown up a lot since her diagnosis.
“What she takes in about others around her is more like an adult
than a kid. She doesn’t open up as much to me as she does to
my best friend Ashley – they have a close relationship.
“Ashley had only just got to the U.S. when Taylor got sick. She
cut short her planned two-year trip, moved back to Sydney and
lives a five-minute walk from the hospital. She’s my support
person, she’s always there,” said Rachelle.
Jasmine Robinson at Light the Night in Canberra with her brother
Blake, dad, Matt, and Vanessa, her mum.
In early-2015, the girls move on to the maintenance stage of
treatment, which is oral chemo and means they will only go to
Sydney every three months for tests.
Taylor is keen to go back to daycare and also to getting their
dog, Indy Girl back home.
“She’s just over 12 months old and we haven’t seen her since
she went to stay at my mum’s at Wagga Wagga, but we’ve seen
lots of photos and videos,” Rachelle said.
She is looking forward to Taylor being healthy, to not seeing her
upset and in pain, and to her having a normal childhood, going
to the beach and to the park in the afternoons.
Jasmine can’t wait to go back to jazz and hip hop dancing
and swimming, which she used to do, and to taking up
touch football which she was about to start before getting
ALL.
“I try not to look too far ahead and take one day at a
time,” said Vanessa.
“Looking back at the first few weeks, I can hardly
remember them. I don’t know if I’ve had time to sit
down and process it all and I probably won’t until
maintenance starts at the end of January.”
Vanessa said that when the girls are back at their respective
homes, they message each other regularly to see how the
other is going, talk on the phone and share photos.
“We just get settled in, then we have to get up and go back
to Sydney. Jasmine is tiring of the travel back and forth and I
coax her by saying, ‘we’ll see Taylor’.” Vanessa said.
Taylor Garrett at the beach with her mum, Rachelle Mintern.
6
Leukaemia Foundation ALL News – January 2015
Research Matters
Continued from page 3
6. Explain the importance of a country having its own blood
cancer bio-bank* and how this helps progress ALL research?
Tissue banking is absolutely essential – it is the basis for any
research. It is also important to have the fitting clinical data,
e.g., diagnosis and follow-up information for the tissue that is
banked. The best way is to combine the tissue bank and the
clinical cancer registry. This is what our group is doing. We have
a tissue bank and the registry, so we can identify subgroups of
patients for research and create research programs.
7. You have been involved in
the development of the German
Consortium for Translational
Cancer Research. What is
translational research and why
is it important?
Translational research means
actually passing on information
more quickly from basic research
into clinical research for the direct
benefit of the patient. This is very
important. Information on the
biology of cancers is increasing
tremendously and getting more
complicated. An aim of this network
is to find ways to better combine
this data and get clinicians and
basic researchers in closer
collaboration, to close this gap
between basic research and the
clinical application of the results.
A very good example of how this
may work is in ALL, which has been
biologically identified. Now ideas
are coming up from the biology as
to which treatment may be active in
a patient. This consortium stands
for all cancers and is based on biobanking clinical data.
8. How well funded is translational
research compared to other forms
of cancer research, and is this
proportion of funding appropriate?
Funding is never enough, and of
course, it depends on the country.
In Germany, we have a really
large program now, so funding for
translational research is quite good.
What I would like to see is more
funding for clinical research because
clinical trials are tremendously
expensive these days due to the
bureaucracy and the rules, which
need to be reviewed.
For example, bone necrosis, which increases with more
intensive chemotherapy and can lead
to the need for artificial hips, can be a
big problem, especially in young adults.
Another problem is the development
of secondary cancers in leukaemia
survivors. We really need to follow-up
patients on a regular basis for QOL and
for late-effects, combined with a program
to detect these late effects.
To ensure our range of disease-specific
ALL NEWSLETTER
READERSHIP
SURVEY
newsletters, including ALL News, continues
to meet the needs of people with blood
cancer, the Leukaemia Foundation is
conducting a national survey.
We are seeking your feedback and
encourage you to take part in the
readership survey:
http://surveymonkey.com/s/Newsletter_
Readership_Survey.
ACUTE
LYMPHOBLASTIC
LEUKAEMIA NEWS
CARING
FOR PEOPLE
WITH ACUTE
LYMPHOBLASTIC
LEUKAEMIA AND
THEIR FAMILIES
JULY 2014
LEUKAEMIA HURDLES NOW IN THE PAST FOR KATE
Kate McLennan got a bike for her 8th birthday that she
never learnt to ride.
previously been in a room up a flight of stairs, was relocated to
ground level.
Not long after her birthday, Kate, now 19, started feeling tired
and cranky. Her parents, Bronte and Tim, initially thought she
had a virus, but she didn’t improve and she started bruising
easily. After several trips to the GP she distinctly remembers the
ambulance ride she had to a Brisbane hospital.
“I didn’t enjoy going to school because I stood out, but I had no
choice,” said Kate, who was in a wheelchair and still hooked to a
nasal gastric tube.
Blood tests showed Kate had ALL and she began treatment.
She spent the first three weeks after her diagnosis in hospital,
and over the next three years, her resilience and fortitude saw
her overcome several major hurdles; the worst being a rare
fungal infection.
“It was everywhere, in my lungs and in my joints – shoulders,
legs and elbows. I had to stop treatment and had lots of surgery
to remove the fungal infection which was washed out of my
joints,” explained Kate.
“I was off school for quite a while.”
During the six months Kate spent in hospital fighting this
infection, her grade three teacher brought in a bucket of
tadpoles to show her how a school project was progressing.
And when Kate returned to school, her class, which had
IN THIS ISSUE
Young Bloods program ..................... 2
Finding new treatments .................... 3
Eleven Qs: Prof. Mullighan............ 4-5
Tobi’s an inspiration .......................... 7
Diary Dates ........................................ 8
“I had to learn to walk again and I had to learn to eat again too,
because I was totally not interested in food.
“Socialising was pretty difficult. One of my best friends before
the illness was very sporty. Afterwards, I made a new group of
friends who were the quieter kids.
“In grades three to seven I was sick and recovering. I had to
learn to deal with not being able to participate. During sports
class, I’d sit and watch or go to the library.
“The easiest transition was to high school, when I wasn’t
visually sick.”
Kate completed her course of treatment in 2005. The following
year she had pins put in her left leg, which was shorter and
bowing inwards, and her mum (a nurse) would lengthen the
screws every night.
Continued on page 6...
10. What are the most common late
effects for people treated for ALL?
Osteonecrosis is a problem. We also found
fatigue in patients even five years after the
diagnosis. We found a very limited number
of secondary cancers, which is good
news. Infertility and hormonal disturbances
are a problem. There is a syndrome
that patients complain about – a lack of
concentration and cognitive problems –
and the problem is that we don’t have a
good test to measure it. There are very
complicated and lengthy neurological tests
but these are not done in daily practice. A
test called DemTect, which was developed
for the detection of dementia, is far too
rough to identify a very limited restriction in
cognition. That’s what we want to evaluate,
but it is difficult to find an adequate test.
11. Is there consensus in Europe, or
within Germany, on a best practice
survivorship plan to monitor people
for late effects and QOL after ALL
treatment?
There is certainly no consensus in Europe.
In Germany, since everything done by
our group is on ALL, of course there is a
consensus. We want to follow up patients
after one, two, and if possible, five years.
But there is a problem of funding because
identifying these patients is a lot of work and
1
there’s a logistical problem identifying their
doctors who may move into private practice.
What we also do, based on our previous
projects, is set up internet-based information for our patients. Our
study group has developed a patient card, which a patient can
get at the end of their intensive treatment. This very small booklet
compiles information on their treatment and issues, which can be
referred to later by private practitioners, e.g., gynaecologists. The
card is provided to all 140 hospitals to give to their patients.
Kate McLennan with brother, Patrick, and her parents, Bronte and Tim, while holidaying together in late-2012.
1800 620 420
www.leukaemia.org.au
9. Based on your experience researching quality of life (QOL)
in adults with ALL, what are their greatest unmet needs and
are these needs consistent across the western world?
Quality of life research can only be done in the context of
national or large study groups, and due to the structure of
our group, we could do this research. The result basically
1800 620 420
was that most of the patients – long-term survivors – had
an overall quality of life similar to the normal population. Of
course, the views of a cancer patient towards life are different
to a person who has never had cancer, i.e., they don’t see so
many problems in normal things as other people. I think QOL
research, which is a more theoretical topic, has to be combined
with the evaluation of late effects of therapy and disease
because this is an increasing problem with ALL management.
www.leukaemia.org.au
* Australia has the Australasian Leukaemia & Lymphoma Tissue Bank.
7
Living Well
TWO NEW CHAPTERS ENHANCE ‘EIGHT SEASONS’
Psychologist, Sandra Evans, wrote about her family’s
journey with childhood leukaemia after her eldest daughter,
Tahlia, was diagnosed with ALL in 2006, aged four.
The book’s title, Eight Seasons, was chosen to reflect the two
years Tahlia underwent treatment in Brisbane, and was published
in 2010. Now Sandra has produced a second edition with two
extra chapters that reflect issues that arise after treatment ends.
“I felt the new chapters – 11 and 12 – were really important to
include; to see that the journey does not just end when treatment
stops,” Sandra said.
“We were in survival mode when I wrote the first 10 chapters, and
at the time we didn’t think about the late side-effects of chemo.
“I wanted to talk about the importance of good follow-up and
aftercare for children who have been treated for leukaemia.
“It seems a lot of people drop out of the system when
treatment finishes, the portacath is removed, and the
danger period is over,” she said.
“When the scheduled appointments reduce to
annual reviews, many don’t go back to see an
oncologist, to follow up their child’s development
and to look out for signs of late side-effects.
“From our experience with Tahlia, it seems
best to deal with these early rather than
ignoring them or hoping they’ll go away.”
Tahlia is now 12 and eight years post
treatment. She starts high school this
year (2015) and “is doing beautifully”
says Sandra. The family of four, including
husband, Randall, and their other
daughter, Lauren, lives in northern New
South Wales.
“We’re in a really good place now and Tahlia is becoming more
confident in areas she found difficult. She’s gained not only
academic confidence but also increased social confidence as a
result of having her areas of difficulty supported.”
Sandra also talks about the long-lasting effects that having a
child with cancer has on parents, and that these continue well
after treatment stops.
“I talk about trauma and how much is unspoken by parents about
this topic because the focus is on the child,” she explained.
“We can put high anxiety symptoms down to being tired or
overwhelmed, but as parents come out of survival mode and the
dust starts to settle, trauma can bubble to the surface.
“It’s important to recognise that any intense worry or anxiety is
likely to be linked to the trauma of watching our children being
exposed to extremely invasive and serious treatments.
My message is not to pathologise such reactions, but to
normalise them and to encourage parents to seek help
and to share the experience with others.
“Some parents become overprotective and worry about
the safety of their children, and this can be even
worse in fathers because men often are not as
open to seeking help and talking about these
issues.
“I wrote Eight Seasons to normalise these
feelings for other parents who are trying
to make sense of some very intense
emotions and the difficult reactions to
what is essentially an abnormal event
– a child with a life-threatening illness,”
said Sandra.
“I’ve had some beautiful responses to
the book and get emails from parents who
say ‘it’s like you’re describing my exact
experience’.
“Drugs like methotrexate have the
Psychologist and author, Sandra Evans, with her
daughter, Tahlia.
potential to cause difficulties with
learning and we felt we needed to
Eight Seasons is available free from the Leukaemia Foundation.
provide opportunities for Tahlia to overcome learning difficulties
Call 1800 620 420 to order a copy.
at school,” Sandra explained.
Read more about Tahlia’s journey in the Spring 2011 issue
“For several years we have sought tutoring and in-class support
of ALL News which can be downloaded from the Leukaemia
for Tahlia, and we’ve made the teaching staff aware that there are
Foundation’s website: www.leukaemia.org.au.
difficulties so they understand that she tires easily and that this is
not laziness but related to her treatment.
Some of the medications have affected Tahlia’s mathematics
ability, visual and spatial awareness, and attention span. She has
physical concerns too, that until recently affected her ability to
play sport. Tahlia has avascular necrosis (bone death) – a result
of high dose steroids. A piece of dead bone in her ankle has
needed surgery, physio and follow-up.
EDUCATION AND SUPPORT – DIARY DATES
The 2015 program of education and support sessions was
being finalised as this issue went to print. For the latest
information, call 1800 620 420 or refer to the Education and
Support Program Calendar at www.leukaemia.org.au.
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.
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
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.
Disclaimer: No person should rely on the contents of this publication without first obtaining advice from their treating specialist.