PDF - Leukaemia Foundation

ALL news.
For people with ALL & their families
July 2016 | www.leukaemia.org.au | 1800 620 420
Contents
Personal experiences with
blinatumomab2
First CAR T-cell study in ALL
Q & A: Dr Kathryn Roberts
3
4-5
Relationships after diagnosis
7
What’s on near you
8
Lauren Krelshem with the 20,000 cranes she
received on her 21st birthday last year.
Immunotherapy gave Lauren a third chance on the
aged 13, as she was completing
being rundown. After having a blood test
road to an Oscar Then,
year seven, she relapsed. This time her
she was told to go to the emergency
Lauren Krelshem, 21 of Adelaide, was
the first Australian to receive her own
genetically modified T-cells to treat
her refractory ALL in a clinical trial in
Melbourne in February.
A month later, she was told all traces of
her leukaemia had gone!
“It was a surreal moment,” said Lauren.
Prior to the immunotherapy trial, Lauren
had been told her only option was
palliative care.
“I’m really glad I’ve been given this third
opportunity to experience life.”
The budding actor has been dealing with
ALL since she was first diagnosed as a
seven year old in 2007, just as she was
about to start her second year of school.
Her two years of chemo she described
as “textbook”. She kept up with her
schoolwork and became a “semi-normal
kid again”.
treatment was an unrelated bone marrow
transplant for which she, her parents and
younger brother and sister moved to
Sydney. They were there for three months
as the procedure was delayed due to
complications – a lung infection and
bowel obstruction, and graft versus host
disease after the transplant.
“I got through all that and we were pretty
certain everything would be fine,” said
Lauren.
“When I passed the five-year post
transplant date in July 2013, I thought ‘oh
yeah, that’s it.”
“...I’ve been given this third
opportunity to experience life.”
In early-2015, when Lauren was in her
final year of an acting course at Adelaide
College of the Arts, she went to her
doctor after having a major nosebleed.
She was busy at the time and admits to
department as soon as possible.
“It wasn’t until I was wheeled into the ward
and saw the Leukaemia Foundation’s
pamphlets displayed on the wall that I
realised ‘ok, that’s what’s going on’.”
She was 20, the leukaemia had returned
again, and it was likely she’d need
another transplant, but first she had to
gain remission.
In a bid to access the new drug,
blinatumomab, Lauren went on a
randomised clinical trial*. Blinatumomab was
being tested against the standard protocol
– chemotherapy – however, Lauren was
assigned to the chemo arm of the trial.
“These days they have a minimal residual
disease test (MRD). It showed the chemo
hadn’t worked enough for me to proceed
to transplant.
“So, it was – ‘what do we do now’?’”
Story continued on page 3.
Treatment
2
Personal experiences with blinatumomab support
They responded to this therapy quickly,
Overall, the effect of this drug is well
PBS listing
achieved a good remission and this
summarised by the following quote.
The July meeting* of the
Pharmaceutical Benefits Advisory
Committee considered a major
resubmission for listing blinatumomab**
on the PBS for the treatment of ALL.
“Amazing, very little impact on my
daily life, less hospital stay, more of an
outpatient than inpatient. I felt good, l was
home with my family, my mental health
was much more positive, which meant my
overall health was better.”
Prior to the meeting, the Leukaemia
Foundation surveyed a small number
of people with ALL who had received
blinotumomab as a therapy for their ALL
and agreed to participate. The Foundation
was seeking feedback on their personal
experiences with this drug, to inform its
submission to the PBAC to encourage the
listing of this medication.
The Foundation’s Head of Research
& Advocacy, Dr Anna Williamson said
people who responded to blinatumomab
were given a second chance at life.
The information collected indicated that,
in some people, blinatumomab increased
survival, improved quality of life, and
reduced side-effects.
The Foundation actively advocates for
access to new and promising treatment
options for blood cancer, such as
blinatumomab, that are not yet funded by
the PBS.
“All those who were treated with
blinatumomab stated that they had
expected to die, sometimes within days, if
they hadn’t received this treatment,” said
Dr Williamson.
“Patients told us in the survey...
blinatumomab gave them a new life when
they expected to die from their ALL.”
Of the small sample of people with ALL who
took part in the survey, all reported that
ALL had a major and enduring impact on all
aspects of their lives. Those in employment
or education (23%) had to stop these
activities and most had not been able to
return to their previous work or education.
“In supporting adults with ALL, we see
patients and their families experience
long and gruelling treatments, sometimes
achieving remission/s, but often
they have a poor quality of
life. This blood cancer has
a significant detrimental
impact on all aspects of
their lives and they live
with the constant fear
of relapse.
For the vast majority (84%), their lives had
completely changed since their diagnosis.
They had experienced debilitating
chemotherapy treatments, a loss of physical
and cognitive ability, and their emotional
wellbeing and mental health was negatively
affected. They also had great financial
stress and reported stress on their families
and relationships. Some young women said
they were not ever able to have children.
“Although the tyrosine
kinase inhibitors have
helped treat some
Ph+ ALLs, this blood
cancer in adults
is long overdue
for a significant
improvement in
treatment and
outcomes,” she said.
Their quality of life was affected or
significantly reduced by their blood
cancer and the previous treatments they
had received, and they had made social
changes to manage the risk of infection
to the extent that one person said: “I have
no life anymore”.
“From our limited
exposure to blinatumomab,
it appears to be an effective
treatment without the
heavy burden of side-effects
associated with existing
therapies.
Not all patients achieved a durable
remission with standard chemotherapy.
“As patients told us
in the survey,
blinatumomab
gave them
a new life
when they
expected
to die
from
their
ALL.
“...this blood cancer in adults is long
overdue for a significant improvement
in treatment and outcomes”
Those survey participants who had
experienced blinatumomab in a clinical
trial reported significant benefits from this
treatment compared to chemotherapy.
Their response to the drug was quick and
durable and enabled them to recover from
the side-effects of chemotherapy prior to
having a transplant and then to continue
to have a relatively normal lifestyle.
enabled a successful transplant,” said Dr
Williamson.
Other comments from survey participants:
“So much easier! I was free to go about
day to day activities without the danger
of infection and illness that is a risk with
chemo.”
“It made me much more confident that I
could beat ALL.”
“It (blinatumomab) put me into remission
quickly and my quality of life continued to
be good and I was ever so grateful to get
access to it. Compared to the standard
treatment, it is a game changer.”
“Blinatumomab will give people the
opportunity to continue living a relatively
normal life whilst fighting their ALL. It
is less risky and has less impact than
chemotherapy which will not only decrease
the impact to the individual but to the
health system too. Not only that, imagine
how less traumatic it will be for individuals
and families with a less invasive, more
effective treatment than chemo.”
* The PBAC’s decision
regarding blinatumomab is
pending and is expected
to be announced in
the next couple of
months.
** This drug does
not work for
everyone and
is part of a
treatment
solution for
some people
with ALL.
Clinical Trials
3
93% of advanced ALL patients in remission after
gathered data that may help them predict
trial was designed to evaluate the
immunotherapy This
serious side-effects in the future.
safety of administering the engineered
A small, early phase trial of engineered
immune cells saw 27 of the 29* trial
participants with advanced B-cell ALL
go into remission.
cells and to lay the groundwork for future
improvements. It enrolled only adult patients
with advanced disease that had relapsed or
would not respond to other therapies.
This extraordinary result came when the
patients, who were resistant to multiple
other forms of therapy, had their T-cells
(disease-fighting immune cells) genetically
engineered to fight their cancers.
After patients’ T-cells were extracted from
their bodies, a specialised virus delivered
the DNA instructions for making the
CAR into the cells. Then, the cells were
multiplied to the billions in the lab. After
chemotherapy, the reengineered cells
were infused back into the patients they
came from about two weeks after they
were first extracted.
The study was the first CAR T-cell trial
to infuse patients with an even mixture
of two types of T-cells (helper and killer
cells, which work together to kill cancer).
They received the cells in Seattle (U.S.)
through the Fred Hutchinson/University of
Washington Cancer Consortium.
When their responses were evaluated
a few weeks after the infusion, a highsensitivity test could detect no trace of
their cancer in the bone marrow in 27 of
29 participants.
This experimental therapy harnesses
the power of the immune system to
fight cancers by genetically engineering
patients’ T-cells with a synthetic receptor
molecule called a CAR (chimeric antigen
receptor) that empowers the T-cells to
recognise and kill cancer cells that bear a
specific marker, called CD19.
Not all patients stayed in complete
remission. Some relapsed and were
treated again with CAR T-cells, and two
relapsed with leukaemias that were
immune to the CAR T-cells.
“This experimental therapy harnesses
the power of the immune system to
fight cancers”
Researchers said it was too early to know
what the long-term outcomes would be
of the cell therapy. They learned how to
revise their strategy to lower the risks of
serious side-effects and prevent rejection
of the engineered cells. They also
Study leader, Dr Cameron Turtle, said
patients who come onto the trial have
really limited options for treatment.
“They have refractory, acute leukemia, so
the fact that we’re getting so many into
remission is giving these people a way
forward,” Dr Turtle said.
“This is just the beginning. It sounds fantastic
to say that we get over 90% remissions, but
there’s so much more work to do to make
sure they’re durable remissions, to work out
who’s going to benefit the most, and extend
this work to other diseases.”
The Leukaemia Foundation is cautiously
optimistic about the use of CAR T-cells
in the treatment of ALL. There have
been some issues leading to poor
outcomes in some clinical trials that
need to be fully explored. This therapy
is complex and should not be seen as
the cure-all for all patients at this stage,
however, we are excited about the
advances being made in this field.
* Of the two participants who did not go into
complete remission, one eventually reenrolled in
the trial and went into complete remission after
receiving a higher dose of cells.
Continued: Immunotherapy gave Lauren a third chance
“I wasn’t given any options other than
palliative care,” said Lauren.
“My dad was really angry. He’s good at
researching and is politically savvy. He
got some MPs and senators involved, and
discovered trials in the U.S. and Germany
for inotuzumab that was starting to be
used to get you to a negative MRD, so
you could proceed to transplant.”
As a result, Lauren got compassionate
access to the experimental drug, inotuzumab
ozogamicin from the U.S. This was
administered to her in hospital in Adelaide.
Despite grave concerns about the drug’s
potential to cause toxicity in the liver,
and given how much chemo Lauren had
already had, her body took the drug well.
“The results from it were amazing. It got
my bone marrow into negative MRD but
it didn’t work so well in the lymph nodes
and I got a few swollen lymph nodes with
leukaemia in them.”
Call what happened next coincidence or
fate – a trial for CAR T-cell therapy opened
in Melbourne and the timing was perfect.
“My haematologist found out about it. We
hadn’t heard about CAR T-cells and I had
no other options, except going to the U.S.
or Germany for blinatumomab**.”
It was a paediatric trial and although
Lauren had just turned 21, they let her
in. But there was a complication; the
eligibility criteria included having at least
5% leukaemia cells in the bone marrow.
“The inotuzumab had worked so well,
we had to wait a good month for the
leukaemia to grow back in my bone
marrow,” Lauren explained.
“I had my immune system cells
harvested here (in Australia) and they
were genetically modified in the U.S. to
recognise my specific type of leukaemia.”
Lauren went to Melbourne for the
treatment which had been delayed for
several weeks as she had a severe staph
infection in her leg. This infection had
developed from an injury because she
was immune suppressed and it had to be
surgically removed, and drained.
On February 15, she received the CAR
T-cells by infusion.
Story continued on page 6.
Research Matters
4
Eleven Questions – Dr Kathryn Roberts
Dr Kathryn Roberts was an
international speaker at the New
Directions in Leukaemia Research
(NDLR) meeting at Noosa in March. It
was her fifth NDLR; she first attended
as a grad student 10 years ago. After
receiving her PhD at the University
of Newcastle, she moved to St
Jude Children’s Research Hospital
(Memphis, U.S.) where she works
with Professor Charles Mullighan. Her
research involves genomic profiling
and experimental modeling of highrisk ALL with a focus on Philadelphia
chromosome-like ALL.
Describe your role in researching ALL.
I study a subtype of ALL in children
that is very high-risk. Children usually
have excellent treatment outcomes with
current chemotherapy agents used in
ALL, but we noticed a group of children
who did poorly with traditional therapies.
We performed genomic screening and
identified that these patients had a gene
expression similar to patients who harbor
the Philadelphia (Ph) chromosome. The
Ph chromosome encodes an overactive
kinase fusion, BCR-ABL1, that leads
to uncontrolled proliferation (a rapid
increase) of leukaemia cells. These new
patients lack the BCR-ABL1 translocation,
indicating they may harbor other kinase
alterations. The new subtype was termed
Ph chromosome like (Ph-like ALL). We
have performed extensive genomic
sequencing of patients with Ph-like
ALL, and identified a large number of
additional kinase alterations that can be
targeted with specific tyrosine kinase
inhibitors (TKIs). Hence, we think TKIs
are a logical treatment option for these
patients.
“I’m very interested in understanding
the genetics of cancer.”
Why did you choose to focus on
this particular blood cancer?
I’m very interested in understanding the
genetics of cancer. When I started my
research career, the first wave of genetic
studies were in leukaemia. I thought
it was fascinating that a single point
mutation or alteration of a single gene
could contribute to leukaemic disease or
drug resistance. I always felt an affinity
for haematological malignancies after my
graduate studies, and wanted to move
into more advanced genomic techniques.
These were being pioneered in ALL at St
Jude’s Children’s Research Hospital, so
it was a natural fit for me to continue my
work on that.
How do you see the work you are
doing in the U.S. helping Australians
with ALL?
Does ALL in adults and children
differ genetically – is this why they have
very different treatment outcomes?
It’s helping them in a number of ways.
Firstly, we collaborate with a group at
the South Australian Health & Medical
Research Institute (SAHMRI) that is rapidly
becoming a centre for ALL genomics
research. They are performing genomic
screening on a large number of ALL
patients and plan to implement diagnostic
tests for patients with Ph-like ALL. We
helped them set up these diagnostic
assays – how to identify patients with Phlike ALL – to identify if they also have a
poor outcome in the Australia population,
then helped them to identify the genetic
lesions and establish cell models so they
can implement clinical trials for treating
these patients in the future. Secondly,
through the Children’s Oncology Group,
we are involved in designing clinical trials
for testing TKI therapy in Ph-like ALL
patients. These trials are available at a
number of hospitals in Australia.
Yes and no. We see similar kinds of
genetic alterations in children and adults
but the frequencies vary. Approximately
50% of childhood ALL is comprised of
genetic subtypes that are associated with
good outcomes. The frequency of these
‘good outcome subtypes’ decreases
dramatically in adult ALL. Conversely,
subtypes that have a high risk or poor
outcome in childhood ALL increase in
adult ALL, e.g., BCR-ABL ALL in children
accounts for 2-5% of children but is
25% of adult ALL. The breakthrough our
group has provided in the last two years
How is Professor Mullighan’s team
regarded worldwide for its current
research and contributions to furthering
an understanding of ALL?
Dr Mullighan is a world expert in the
genomics of ALL, his group is among the
first to report new genomic alterations
in ALL, and his research has direct
influence worldwide. Many international
co-operative groups such as those in
Italy, The Netherlands, Germany and the
UK are also adopting the identification of
Ph-like ALL and establishing TKI therapy
trials.
Much of the improvement in
survival rates in the last 20 years in ALL
has been in children. What were the
strategies used by the paediatric sector
to achieve such good outcomes, and
have these strategies been applied in
the adult sector?
There are several reasons why children
with leukaemia have superior treatment
outcomes compared to adults. Children
can tolerate much harsher chemotherapy
regimens than adults, and they also
bounce back better from transplants.
Even though we don’t provide adults with
as much chemo, they still have increased
toxicity-related deaths from chemo and
transplantation. We understand the
genetics of childhood leukaemia better
and we’re starting to understand the
genetics of adult leukaemia and how they
may differ. The types of therapies we give
to children we may need to adjust and
modify for adults. Because ALL is much
more common in children, that is a natural
place to start.
Research Matters
is to show that the frequency of Ph-like
ALL increases from 10-15% in children to
account for more than 25% in adult ALL.
Why that is, we don’t really know. So in
adults you have the combination of – they
don’t respond to therapy as well and they
have more of these high-risk genetic
subtypes.
Are there any potential
breakthroughs in the treatment of ALL
on the horizon that may impact patients
within the next five years?
We will see further efficacy of
immunotherapy. There’s a molecule on
the surface of the ALL cells called CD19
and researchers are developing ways to
5
“...the South Australian Health &
Medical Research Institute (SAHMRI)
is rapidly becoming a centre for ALL
genomics research.”
utilise the expression of this molecule.
They’re engineering and enhancing
a person’s own immune system to
recognise and attack the ALL cells. This
has been extremely efficacious in CD19+
ALL – it’s really the poster child for
immunotherapies. This is done by either
engineering T-cells within a person’s
immune system to recognise the CD19
cells or they have monoclonal antibodies
that brings together a person’s T-cells
and ALL cells so the T-cells can recognise
the ALL cells. Importantly, this works in
different genetic subtypes. It’s not reliant
on the underlying mutation in a person’s
ALL cells, they just need to have CD19
expressed. And it is broadly applicable,
especially in the relapse/refractory ALL
setting. For people with Ph+ and Ph-like
ALL, a breakthrough therapy is that we
can try TKIs on these patients, but for
patients without a targetable mutation
and if we don’t have a drug that already
exists that is a logical treatment choice,
immunotherapy is really going to advance
the choices we have for these patients.
Some of your research focuses on
the genomics of high-risk ALL. What
is high risk ALL and what have you
learned from this that will help people
with high-risk ALL into the future?
Overall survival for childhood ALL is
excellent but there are clear subtypes
(i.e., Ph+ and Ph-like ALL) where
the overall five-year survival is just
unacceptable. High-risk ALL is defined
by people who have a poor outcome;
they have a high risk of their disease
coming back. After high dose induction
chemotherapy, those patients who still
have evidence of leukaemia in their bone
marrow we know will have a high risk of
developing relapse.
Will you use your findings about
a previously unknown mechanism for
leukaemia to develop new therapies or
will you be using existing therapies?
For children, an important factor when
you’re looking at new therapies is that
they respond well to chemotherapy (and
can tolerate higher doses of treatment)
but there is a big concern about toxicity.
In the foreseeable future, therapies will
have a chemotherapy backbone. With
Ph-like ALL we add TKI therapy to existing
chemotherapy. With new therapies, there
is a real concern for toxicity with two
combined regimens, whatever the second
regimen may be. There has to be a lot of
work in Phase I safety trials if you’re testing
a completely new therapy. The appeal of
treating Ph-like ALL patients with known
TKIs is that we know the combination of
some of these TKIs and chemotherapy is
safe in children. For Ph-like ALL, based on
the genomics, we have the option to use
a second generation ABL1 TKI (dasatinib)
or the JAK inhibitor, ruxolitinib, which
hasn’t been tested with chemotherapy in
children. Clinical trials testing ruxolitinib
with chemotherapy in children are being
developed in the U.S. now.
What clinical trials do you have
planned to commence in the next 24
months? What therapies will be tested and
how widely available will the trials be – will
there be any trial sites in Australia?
We are part of the Children’s Oncology
Group (COG) in the U.S. – an umbrella
institute that develops trials that are
implemented at over 100 institutes
including Australia and NZ. We have
worked with COG for the last few years,
developing diagnostic tests and going
through the amendments to establish a
clinical trial for Ph-like ALL, adding dasatinib
to a chemotherapy backbone. A second,
separate trial is being developed, looking
at patients with JAK2 rearrangements,
adding the JAK inhibitor, ruxolitinib. At the
MD Anderson Cancer Center, a trial that’s
been open for 10 months (as at July 2016)
using the same agents but in adult ALL
patients, and St Jude’s Children’s Research
Hospital is also adding these agents to
their next frontline trial that opens next
January (2017). Australians should have
access to these trials at centres that are
involved with COG.
“We will see further efficacy of
immunotherapy...this has been
extremely efficacious in CD19+ ALL.”
What are the most promising
studies underway in the world that are
seeking to cure ALL?
There are two aspects of leukaemia –
cells that grow uncontrollably (proliferate),
and their ability to duplicate themselves.
We understand and have a lot of studies
for the proliferation aspect, but studies
looking at how the cells self renew
(continuously produce new leukaemia
cells) are very important, and this is
a little bit harder to target. There’s a
theory that when we treat leukaemia,
sometimes we don’t eradicate the most
immature leukaemia cell and that cell
can stay in the bone marrow dormant.
Once the therapy is removed, it can
start repopulating again. So, the most
promising studies are those that identify
how we can eradicate those particular
cells that are resistant to the current
therapies.
My Journey
6
Continued: Immunotherapy gave Lauren a third chance
“It was surreal. I was the first person (to
have them in Australia). There were plenty
of people in the room watching. There
was a chance I’d have to go to ICU. It was
quite funny, because nothing happened!
“I was nervous and worried that I may have
a reaction, but to be honest I was more
thankful that we were trying something.
“It was exciting at the same time, to be
almost like a guinea pig trying this new
treatment in the hope that it might work.
A month after the T-cell infusion, Lauren
returned to Melbourne for a bone marrow
biopsy.
“It showed no cancer cells. My MRD was
negative. I was basically told it had worked.
“My lymph nodes came down and
completely disappeared. It was really weird.
“I was a bit overwhelmed. It was such a
hard road for quite a long time so when
I got the sheet of paper that said ‘you’re
cancer-free’, I was a bit gob smacked.”
“Unlike a transplant there was no ‘100
days***’, so basically I could go home
with close monitoring of my bloods. Every
month, I go to Melbourne for tests and a
bone marrow biopsy, which I don’t mind.
“It’s an opportunity to catch up with friends
and to explore Melbourne. One day I
hope to live there.”
Now Lauren’s sights are firmly focused
on her dream of becoming a paid actor.
She’s looking at further study options, has
several auditions lined up and is planning
to move to Melbourne next year.
exercise dude there has been helping me
improve my strength and flexibility which
has helped me walk again. And the fact
that I don’t have to pay for it is another
stress I don’t have to worry about.
“Health is everything and life is so short.
If I can’t do what I love, what’s the point
of fighting so hard to get my life back on
track? I’m onto it.”
“Having someone to talk to about options
and treatment was extremely helpful. If I
had any questions, I could always go to
Dr Pete (Peter Diamond, Blood Cancer
Support Manager in South Australia) and
he’d pass on any research he found about
inotuzumab.”
Lauren says the Leukaemia Foundation has
been indispensible, providing transport,
accommodation and information.
“In a way, I’m glad I’ve experienced
leukaemia as a child, a teenager and a young
adult. Each time has been so different.”
“Lauren is hopeful that one day she’ll
win an Oscar.”
“I remember reading Joe has Leukaemia
when I was seven and when I was 13
we used the ‘leukaemia cars’ in Sydney
during my transplant.
Lauren started making paper cranes
when she was in hospital after her relapse
last year after hearing of the Japanese
fable about how, if you make 1000
cranes, you get a wish. Lauren’s wish
was to find a drug that gave her another
treatment option. Then a friend heard
about what she was doing and set up a
secret Facebook page. It snowballed and
random people from all over the world
including famous actors, musicians and
sports people contributed to the crane
making effort without Lauren knowing.
“It’s an amazing service, especially this
time, when I took charge of my journey.
“Being a young adult with leukaemia, your
independence is taken away from you. I
couldn’t drive because of the drugs and
couldn’t take public transport because of
low immunity. The leukaemia cars became
a godsend especially when I got home
from Melbourne and had to go to hospital
for checkups two or three times a week.
“When my cells were harvested, we stayed
in the Leukaemia Foundation apartments in
Melbourne which was such a relief.
“And the leukaemia village in Adelaide
has this awesome little gym set up and the
On her 21st birthday, she came home
from having breakfast with girlfriends to
a surprise – her living room was decked
out with 20,000 cranes, along with a
television crew. The event got national
and international media coverage.
“I’ve had my 15 minutes of fame,” said
Lauren, who at the moment has all 21,000
origami cranes in her garage at home.
Next year, she plans to celebrate her
23rd birthday by burning them all in a big
bonfire at a ‘Burning Cranes Festival’ and
hopes the event will help achieve her goal
of raising $10,000 to support research.
“This is a way of giving all the support and
love I’ve received back to the universe and
to those who didn’t get to where I am.”
Lauren ended up making the full 1000
cranes herself, and she directed the
additional 20 wishes she had towards
getting better so she can pursue her goals
and aspirations in life.
Making 1000 cranes also meant ticking this
item off the 64 things she has so far on her
bucket list which she started after reading
the book ‘100 Things’ by Sebastian Terry;
things you’d like to do in your lifetime.
Along with going to the Bahamas, doing a
yoga retreat and swimming with dolphins,
Lauren is hopeful that one day she’ll win
an Oscar.
* Looking back on this clinical trial, Lauren said that
while being initially disappointed at missing out on
being on the blinatumomab arm of the trial, it turned
out to be in her best interest. Having ‘blin’ would
have made her ineligible for the CAR T-cell trial
and, in the event of a future relapse, she still has the
option of having blinatumomab down the track.
** At a cost of $100,000 for the drug alone, plus
flights and accommodation, etc.
*** The average time people stay close to their
treatment centre after having a transplant.
Living Well
7
Relationships after diagnosis
Serious illness within a family can
be challenging for relationships with
partners, family, and friends.
Diagnosis with a blood cancer, like ALL,
can be very confrontational to the person
diagnosed as well as to those people
who love them, and can result in changes
to relationships. How relationships with
others change depends largely on each
person’s way of coping with problems.
Friends and family may internalise the
diagnosis differently. Some will be very
practical, wanting to get on with whatever
has to be done to get you better, while
others will tackle concepts around your
mortality and your being more physically
fragile than they had imagined.
As well as dealing with the threat of losing
a loved one, treatments and medical
appointments are demanding on loved
ones’ time and emotional resources.
Unfortunately, some relationships
occasionally break down under the strain,
especially if serious problems existed prior
to the diagnosis. However, many other
people become closer and experience a
strengthening of their relationships through
facing a difficult time together.
A changed attitude to life, often involving
different priorities and a heightened
appreciation of everyday family life and
close relationships, also is common.
For those who have a partner, as this
person is often your main support, this
relationship can be more greatly affected
than others. The impact will vary from
couple to couple and may include the
need to vary roles and responsibilities,
intimacy, and plans for the future.
During treatment many people are too busy
to focus on their relationship, which means
problems often don’t arise until the end of
treatment. This post-treatment period can
be a sensitive time when you need to deal
with issues within your relationship.
How friends and family respond to you
after diagnosis may not be what you
expected. People you felt close to before
your diagnosis may seem distant and less
interested in seeing you, and sometimes
former acquaintances step up and show
a real dedication to supporting you
and your family. The range of people’s
experiences in this regard varies widely.
Facing reactions that seem insensitive to
your needs, as people try to play down
your ALL experience or seem to be
avoiding you, can be hard. Some people
may try to take over and tell you what
you should and shouldn’t be doing to get
better. This may be a coping mechanism
for them, as they don’t know what to say
or how to help you in your situation. They
may have their own difficulties coping
with the changes in your life and how
these may affect their normal interactions
with you. How they interact with you may
change and could include contacting
or visiting you less often or not inviting
you to events, which could be due to not
wanting to upset you, or perceiving that
you don’t want visitors or are too unwell to
go out and socialise. It doesn’t necessarily
mean they don’t care about you.
You may chose to be proactive in
maintaining your friendships after a
diagnosis, rather than waiting for friends
to approach you. To allay their uneasiness
about your change in circumstance, you
may like to approach them and assure
them that they are important to you and
you value them in your life. Be honest with
them and focus on understanding their
various reactions to your situation.
There may be times when friendships and
relationships are lost after a diagnosis.
This can be painful and can leave you
feeling uncertain as to what went wrong.
You may feel abandoned by loved ones
at the time when you feel you need them
the most and this can leave you feeling
Many people benefit from receiving
support from someone outside the
family who can help them deal with
issues that the illness has raised
within their relationship and family.
Caption to come
a sense of great injustice. This is not
uncommon when a person experiences a
significant change in their life that affects
usual activities and ways of interacting
with others.
Helpful suggestions
•Acknowledge that when someone
is diagnosed with a serious illness,
everyone is grieving and will take some
time to adjust. This is normal.
•Having some understanding that
individuals cope differently in relation
to serious illness can be helpful. Just
because people may cope differently to
you or in ways you don’t expect does
not mean they don’t care.
•Effective communication with family and
friends is essential. Being clear with
others about what you want and need
allows people to be of greater support
and to work together as a team to solve
problems.
•Be specific with people about ways
in which they can help you. People
often want to help but don’t know
how. Let them know the topics you
want to discuss and those you don’t.
Consider letting them help by attending
appointments with you, visiting, assisting
with household tasks, or taking your
mind off things by doing or talking about
fun things that are not related to cancer.
•Make time to focus on your relationship
with your partner. Try to limit the amount
of time spent talking about cancer and
reconnect with each other talking about
and doing things that remind you of life
before cancer.
•Identify those things in life that are
meaningful to you and focus on how
grateful you are for these things. •Maintain a sense of humour and
perspective on life.
•Many treatment centres have a
counsellor, psychologist, social worker
and pastoral care workers who can
assist you and your family to cope
better with the practical and emotional
difficulties you may be experiencing.
They can also identify strategies
to help you and your family cope,
during and after treatment.
What’s on near you
8
NEW SOUTH WALES & AUSTRALIAN CAPITAL TERRITORY
Sydney Metro
18 Jul
10am-12pm
20 Jul
2-4pm
25 Jul
10-11.30am
29 Jul
10am-12pm
12 Aug
10am-12pm
31 Aug
11am-1pm
Liverpool Blood Cancer Information & Support Group
(also 15 Aug, 19 Sep)
Randwick Blood Cancer Education & Support Group
(also 17 Aug, 21 Sep, 19 Oct, 16 Nov, 14 Dec)
St George Blood Cancer Education & Support Group
(also 29 Aug, 26 Sep, 31 Oct, 28 Nov, 19 Dec)
Sydney & North Sydney Blood Cancer Education & Support
Group (also 26 Aug)
Concord Blood Cancer Information & Support Group
(also 9 Sep, 14 Oct, 11 Nov, 9 Dec)
Westmead Blood Cancer Education & Support Group
(also 28 Sep, 26 Oct, 30 Nov, 14 Dec)
ACT & Southern NSW
20 Jul
8 Aug
10.30am12.30pm
11am-1.30pm
Eurobodalla Shire Blood Cancer Education & Support
Group, Moruya (also 17 Aug, 21 Sep, 19 Oct, 16 Nov, 21 Dec)
Goulburn & Surrounds Blood Cancer Coffee Group (also 12 Sep,
10 Oct, 14 Nov, 12 Dec)
Central Coast
26 Jul
2-3.30pm
28 Jul
10-11.30am
Wyong Blood Cancer Education & Support Group (also 30 Aug,
27 Sep, 25 Oct, 29 Nov)
Gosford Blood Cancer Education & Support Group (also 25 Aug,
29 Sep, 27 Oct, 24 Nov)
TASMANIA
27 Jul
2 Aug
24 Aug
26 Oct
9 Nov
15 Nov
30 Nov
6 Dec
11am-1pm
11am-2pm
11am-1pm
11am-12.30pm
11am-1pm
10.45am-2pm
11am-2pm
12-2pm
VICTORIA
Melbourne Metro
26 Jul
6.30-8.30pm
Emotional Well Being Forum, Melbourne
28 Jul
5 Aug
18 Aug
10am
10-11.30am
10.15-11.45am
25 Aug
26 Aug
1 Sep
10-11.30am
12-3.30pm
10-11.30am
Eastern Suburbs Support Group, Croydon
Man Cave (also 7 Oct)
Bone Marrow and Stem Cell Transplant Support Group,
Hawthorn (also 10 Nov)
Northern Suburbs Blood Cancer Support Group, Preston
Forum: Financial & Physical Wellbeing, Melbourne
Brighton Blood Cancer Support Group
Barwon South West
Central West & Far West
24 Aug
27 Oct
23 Nov
3 Aug
10.30am-12pm
Gippsland
4 Aug
10-11.30am
11 Aug
11am-12pm
Dubbo Blood Cancer Education & Support Group (also 7 Sep,
5 Oct, 2 Nov, 7 Dec)
Orange Cancer Education & Support Group (also 1 Sep, 6 Oct,
3 Nov, 1 Dec)
Mudgee Blood Cancer Education & Support Group (also 8 Dec)
Hunter
2 Aug
10am-12pm
16 Aug
10.30am-12pm
Newcastle Blood Cancer Education & Support Group
(also 4 Oct, 13 Dec)
Taree Blood Cancer Education & Support Group (also 15 Nov)
Illawarra & Shoalhaven
27 Jul
10 Aug
10am-12pm
Mid North Coast
18 Jul
1-3pm
28 Jul
11.30am-1pm
Port Macquarie Blood Cancer Information & Support Group
(also 15 Aug, 19 Sep, 17 Oct, 21 Nov, 19 Dec)
Coffs Harbour Blood Cancer Information & Support Group
(also 25 Aug, 22 Sep, 27 Oct, 24 Nov, 22 Dec)
New England
16 Aug
2-4pm
17 Aug
2-3.30pm
Tamworth Blood Cancer Education & Support Group
(also 18 Oct, 18 Dec)
Armidale Blood Cancer Information & Support Group
(also 19 Oct, 21 Dec)
Northern Rivers
17 Aug
10am-12pm
18 Aug
10am-12pm
Tweed Heads Blood Disorder Support & Morning Tea
(also 21 Sep, 19 Oct, 23 Nov)
Grafton Blood Disorder Support & Morning Tea Group
(also 15 Sep, 20 Oct, 17 Nov, 15 Dec)
NORTHERN TERRITORY
28 Jul
10-11.30am
Alice Springs Support Group (also 25 Aug, 29 Sep, 27 Oct,
24 Nov, 15 Dec)
SOUTH AUSTRALIA
20 Jul
26 Jul
4 Aug
9 Aug
11 Aug
16 Aug
29 Aug
21 Jul
10 Aug
18 Aug
16 Sep
10 Oct
18 Oct
20 Oct
10 Nov
9am-5pm
10am-12pm
10am-1pm
Forum: Emotional Wellbeing, Geelong
Barwon South West Region Blood Cancer Support Group
Navigating the Healthcare System, Warrnambool
1.30-3pm
1.30-3pm
1.30-3pm
1.30-3pm
1.30-3pm
10-11.30am
10.30am-2.30pm
11am-3pm
Leongatha Blood Cancer Education & Support Group
Education forum: Legal Matters, Traralgon
Warragul Support Group
Bairnsdale Blood Cancer Education & Support Group (also 25 Nov)
Traralgon Blood Cancer Support Group
Carers Morning Tea, Berwick
Living with Blood Cancer Education Program, Warragul
Education forum: Legal Matters, Koo Wee Rup
9.30-11am
Ballarat Blood Cancer Support Group (also 3 Nov)
10am-12pm
10am-12pm
10-11.30am
10am-12pm
Wangaratta Blood Cancer Support Group
Echuca Blood Cancer Support Group
Cancer Survivorship Morning Tea with guest speaker, Shepparton
Hume Blood Cancer Support Group, Shepparton
Grampians
Southern Highlands Blood Cancer & Support Program,
Bowral (also 28 Sep, 23 Nov)
Wollongong Blood Cancer Education & Support Group,
Figtree (also 14 Sep, 12 Oct, 9 Nov, 14 Dec)
10.30am12.30pm
Hobart Blood Cancer Support Group (also 12 Oct)
Understanding the Role of Transportation, Launceston
Understanding Blood Cancer Forum, Hobart
Hobart Man Cave
Clinical Trials, Hobart
Caring for the Carers, Launceston
Southern Tasmanian Christmas Party, Hobart
Blood Cancer Christmas BBQ, Launceston
18 Aug
Hume
26 Jul
16 Aug
14 Sep
23 Nov
Loddon/Mallee
15 Aug
1.30-3.30pm
Mildura Blood Cancer Support Group (also 17 Oct)
WESTERN AUSTRALIA
Perth Metro
18 Jul
30 Jul
9 Aug
1-3pm
8am-12pm
10am-12pm
Perth Central Blood Cancer Support Network (also 15 Aug)
Blood Cancer Education Session, Bentley
Perth Blood Cancer Education Session (also 19 Sep, 17 Oct, 21 Nov)
10.30am-12pm
Bunbury Regional Blood Cancer Network (also 1 Sep, 3 Nov, 1 Dec)
Bunbury
4 Aug
Great Southern
10 Aug
10am-12pm
Great Southern Albany Blood Cancer Network (also 12 Oct)
21 Jul
10.30am-12pm
22 Jul
1-2.30pm
Peel Region Blood Cancer Network (also 18 Aug, 20 Oct,
17 Nov, 8 Dec)
Port Kennedy Blood Cancer Support Network (also 19 Aug,
16 Sep, 21 Oct, 18 Nov)
Peel
11am-1pm
Strathalbyn Support Group (also 17 Aug, 21 Sep, 19 Oct, 16 Nov)
10.30am-12.30pm Men’s Support Group, Northfield (also 27 Sep, 29 Nov)
10am-12pm
Women’s Support Group, Henley Beach (also 1 Sep, 6 Oct,
3 Nov, 1 Dec)
10am-12pm
Port Lincoln Support Group (also 11 Oct)
10am-12pm
Southern Adelaide Support Group, Noarlunga Downs
(also 8 Sep, 13 Oct, 10 Nov)
10am-12pm
Northern Adelaide Support Group, Evanston
5.30-6.30pm
Mt Gambier Support Group (also 31 Oct)
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]
Contact us
GPO Box 9954, IN YOUR CAPITAL CITY
www.leukaemia.org.au
1800 620 420
LeukaemiaFoundation
[email protected]
LeukaemiaAus
LeukaemiaFoundation
Disclaimer: No person should rely on the contents of this publication without first obtaining advice from their treating specialist.