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Blood cancer doesn’t stop: Ari’s story

Blood cancer doesn’t stop: Ari’s story

Baczynski Family at a Leukaemia Foundation accommodation unit
The Baczynski family are still facing up to life with blood cancer despite coronavirus

Ari Baczynski, aged 4, was diagnosed with blood cancer last year. She must still travel across Queensland to hospital each month for life-saving treatment, but now her family must face the added challenges brought about by COVID-19.

Ari’s mum, Bonnie, spoke to us about the ways the family is protecting itself and the impact the virus is having on their lives.

Our biggest concern is if there will be a bed for Ari should the hospitals become too full

Self-isolation and social distancing

Last week the hospital sent an information sheet to oncology patients, including us, and their recommendation is to avoid sending  young people who are being treated for cancer to school, kindy or daycare, and to avoid taking them to shopping centres. Basically, they recommended we self-isolate as much as possible and they’re trying to limit traffic through hospitals as well.

My husband, Elliot, still needs to work running our small business and my six-year-old son, Oren, is still attending his tiny primary school of only 21 kids.

Elliot is taking extra precautions and works from home as much as he can. I feel confident the school is taking all measures possible to keep the kids safe as there are already a few high-risk children at the school.

Essential services

We’re currently trying to apply for online grocery orders; the supermarket will now only do them for senior citizens and immune-compromised people. We’re still waiting for our application to be approved and to provide proof of Ari’s special case. Luckily, we get our fruit and vegetables delivered by a local business, so we are ok for a while.

We’ve also put a sign up at the front gate for any deliveries to be left on the veranda in boxes.

The problem is a lot of people are now travelling out to the regional areas to get supplies, so our local stores are also running out of essential items.

Practicing good hygiene

Because of Ari’s treatment last year we’re all pretty used to having to isolate ourselves and constantly making sure we’re washing our hands. Ari has her own sink and the whole family has the nail brushes handy for a proper scrub.

Access to treatment

Once a month Ari is still travelling to the city for treatment. Because of COVID-19, the children’s hospital is only letting one parent come for out-patient appointments, so my husband has been going with her while I stay and look after our other children.

Preparing for an emergency

We have a local ambulance and hospital protocol should Ari catch a fever, and a direct line to our regional case manager and to the oncology department at the hospital should we need to speak to anyone.

The oncologist has said to us that if Ari caught the virus it wouldn’t be too bad. She had  Rous sarcoma virus (RSV)  when she was first diagnosed and her immune levels were much lower then. It shouldn’t be too different to that.

Our biggest concern is, if the hospitals become too full, there will not be a bed for Ari should she become ill. If she needs care, what does that look like? The extra demand on the hospital system seems to be the biggest concern of the government as well. It’s the people with the existing conditions, like Ari, that will find it hard.

Words to live by

Everybody needs to come to terms with the fact that we are in for the long haul. I realise this is a big shock for people. I guess those living with blood cancer know what it’s like to be told you must adjust to a new way of life. I think people need to get used to the fact that we are all going to need to make sacrifices for the greater good.

#yourstorycounts

Share your story of living with blood cancer in the COVID-19 crisis.

Tell us how the outbreak has impacted your every-day life and how the Australian community can best support you through this uncertain time.

Also share your message of support for other blood cancer families and advice for keeping safe during the outbreak.

We may then share on this page for our blood cancer community.

Email storyhub@www.leukaemia.org.au with your story.

Leukaemia Foundation invests $2.6m+ in innovative myeloma research

Leukaemia Foundation invests $2.6m+ in innovative myeloma research

Better understanding and treating myeloma is the focus of eight research projects that are part of the Leukaemia Foundation’s National Research Program.

This $2.62 million investment into myeloma research at some of Australia’s leading research centres is aimed at developing better diagnostics including genetic testing and monitoring myeloma, developing a range of new and targeted therapies, and improving quality of life.

Strategic Ecosystem Research Partnerships (SERP)

Of the Leukaemia Foundation’s nine current Strategic Ecosystem Research Partnership projects, four are focused on myeloma.

The development and approval of several new myeloma drugs over the last five years has resulted in positive treatment outcomes for many people living with myeloma. Despite all these new drugs, it is understood that many people living with myeloma will, at some stage, stop responding to therapy and relapse. It is thought that a population of dormant, or ‘sleep-like’, myeloma cells hidden in discrete bone marrow niches survive current therapy and reactivate, or ‘wake up’, leading to relapse. To cure myeloma, it is essential to kill these rare, therapy-resistant dormant cells.

The Leukaemia Foundation is supporting a research consortium headed by professors Andrew Zannettino (South Australian Health and Medical Research Institute, Adelaide), Peter Croucher (Garvan Institute of Medical Research, Sydney) and Mark Smyth (Queensland Institute of Medical Research, Brisbane). This project combines their expertise in cancer cell dormancy, the role of the immune system in cancer control, and how the cancer cell environment of the bone marrow contributes to cancer growth to examine The role of the bone marrow microenvironment in myeloma development.

This research, due for completion in July 2022, will identify new markers of myeloma cancer cell dormancy that will be used to specify which types of treatments are likely to have the most favourable clinical outcomes for myeloma patients, and to develop a diagnostic test to identify the indolent stages of myeloma, called monoclonal gammopathy of undetermined significance (MGUS), and smoldering myeloma (SM).

Jake Shortt
Associate Professor Jake Shortt

Associate Professor Jake Shortt and his team at Monash University (Melbourne) received a two-year SERP, funded to July 2021, for research titled, Characterisation of a novel DCAF factor as a blood cancer therapy. Prof. Shortt has identified a new class of small ‘drug-like’ molecules that preliminary lab-based tests show can kill myeloma cells that are inherently resistant to existing treatments. This project will develop lead drug candidates in a series of experiments designed to accelerate progression to human trials and will be tested in combination with existing myeloma therapies.​

Dr Daniel Gray’s lab at the Walter and Eliza Hall Institute of Medical Research (Melbourne) has identified a way to study how blood cancers develop resistance to therapy using a technology called mass cytometry CyTOF. This project, Deep profiling of ALL and myeloma for targeted therapies, will identify relevant disease pathways at the single-cell level for a better understanding of the mechanism by which blood cancer cells acquire treatment resistance and determining the impact of directed combination targeted therapy on treatment resistant blood cancer cell populations. The two-year deep profiling study, funded to August 2021, will analyse samples from patients taken before, during and after therapy. The aim is to apply the preliminary results observed in myeloma to acute lymphoblastic leukaemia, which could lead to the design of better treatments and outcomes for these patients.

Daniel Gray
Dr Daniel Gray

Genomic medicine has the potential to transform the delivery of healthcare today and into the future but the widespread use of genomics in clinical practise is not yet a reality for blood cancer patients. The SA Genomics Health Alliance, Haematological Malignancies Node, headed by Dr Anna Brown at the University of South Australia (Adelaide), is developing state-of-the art molecular genetic testing in cancer diagnosis and monitoring, enabling the provision of precision medicine and improved patient outcomes.

Anna Brown
Dr Anna Brown

This includes a single test cancer specific diagnostic gene panel which can identify mutations in more than  60 clinically relevant genes at the same time in myeloma, MPNMDS, Primary and Secondary AMLAn article on this research, due to be completed in November, was featured in the April 2019 issue of Myeloma News.

Translational Research Program (TRP)

The Leukaemia Foundation’s Translational Research Program is co-funded with the Leukemia & Lymphoma Society (U.S.) and Snowdome Foundation. One of the five current TRP projects is for myeloma, which remains incurable, despite the advances in treatments.

 

Dr Stephen Nutt
Dr Stephen Nutt

Dr Stephen Nutt of the Walter and Eliza Hall Institute (Melbourne) received a three-year TRP grant. His project, Therapeutic targeting of IRF4 to treat multiple myeloma, will use a new approach to identify and test drugs that can block the growth of myeloma cells. A factor called IRF4 is essential for the survival of myeloma and therefore represents an excellent potential drug target.​ This project seeks to develop a small molecule inhibitor of IRF4 to directly inhibit IRF4 function or promote its degradation.

PhD scholarships

The Leukaemia Foundation is helping the brightest medical and science graduates pursue a research career in blood cancer by collaborating with the Haematology Society of Australia and New Zealand (HSANZ) to co-fund PhD scholarships.

Over the last two years we have been proud to award six scholarships through our PhD Scholarship Program.

PBAC reconsidered plitidepsin for myeloma 

PBAC reconsidered plitidepsin for myeloma 

The Pharmaceutical Benefits Advisory Committee (PBAC) considered four blood cancer treatments at its March 2020 meeting including a drug for myeloma – plitidepsin (Aplidin®).

Plitidepsin was given a subsequent decision not to recommend. This is the second time the drug was not recommended for listing on the Pharmaceutical Benefits Scheme (PBS) for this particular indication, having been previously considered by the PBAC at its July 2019 meeting.

The submission from Specialised Therapeutics was for plitidepsin in combination with dexamethasone for people with relapsed or refractory myeloma who have had three prior treatment regimens*.

Summary clinical trial information indicated that plitidepsin, which is administered in hospital as an IV therapy, was well tolerated and may reduce the risk of disease progression and death.

However, in its decision not to recommend plitidepsin for listing on the PBS in this indication, the PBAC noted that it considered the claim of non-inferiority versus the comparator drug (pomalidomide) was not demonstrated in the third-line setting and that the cost-effectiveness of plitidepsin was not demonstrated in the fourth-line setting.

The PBAC also considered the treatment comparison against dexamethasone as a monotherapy demonstrated only a marginal benefit in terms of progression free survival (PFS) without progressive disease (PD) confirmation, and the clinical benefit attributed to PFS with PD confirmation was not reliable.

The Leukaemia Foundation provided consumer comments to the PBAC in February 2020. These comments reflect the everyday experiences of people living with myeloma, sourced from our disease-specific community groups on Facebook.

A Victorian patient made the following comment:

“Very excited to hear of new drugs coming from nature – powerful bio-active agents have proven to wildly useful in medicine to date, and have only heard good things about the prospects of this drug for myeloma, which is known to be strongly relapsing to treatment. So while I’m not using it as yet, to have it in the arsenal of available drugs in the future is very encouraging.”

In its submission, the Leukaemia Foundation said: “the benefits of more effective and well tolerated treatments on the lives of individuals with myeloma cannot be underestimated. We assist myeloma patients over the course of their experience with this blood cancer and we know they would welcome the availability of a new treatment option”.

“The impact of this incurable cancer and the cytotoxic effects of treatment have an immeasurable impact on people’s lives and the lives of their families and carers.

“Giving clinicians more options in their ‘toolbox’ in the fight against myeloma, and removing barriers so patients can commence treatments tailored to their disease without any undue delays, is vitally important.”

The Leukaemia Foundation also made comments to the July 2019 PBAC meeting for a previous submission for plitidepsin for myeloma.

*   At least three treatments including both a proteasome inhibitor (PI) and an immunomodulator (IMiD), or in patients who have received two prior lines of therapy, if the patient is refractory and/or intolerant to both a PI and an IMiD.

5,000 new stem cell donors by September 2020

5,000 new stem cell donors by September 2020

Jack Jacobsen

More than 600 Australians have a potentially life-saving stem cell transplant each year and of those needing a matched unrelated donor, more than 80% of their donors are sourced overseas. 

While almost a third of bone marrow transplant recipients find a match within their family, for the remaining 70%, the Australian Bone Marrow Donor Registry (the Registry) matches patients to unrelated donors, both in Australia and around the world.

Unfortunately, some people miss out because they can’t find a suitable donor.

An allogeneic transplant is a potentially life-saving or curative therapy for several types of blood cancer including non-Hodgkin lymphomaMDSAML and ALL.

Currently, the Registry can’t meet the needs of Australian patients requiring an allogeneic stem cell transplant. And, with less than 5% of registered Australian donors being considered ideal (aged 18-30 and generally male), most donors are being sourced from overseas, mainly Germany and the U.S.

There is an urgent need for new donors to meet demand and to help recruit new donors and increase awareness, the Leukaemia Foundation has partnered with the Australian Bone Marrow Donor Registry (ABMDR) for a 12-month trial which runs until September 2020.

We will assist the Registry to achieve its goal of adding 5,000 new Australian donors, aged 18-30, to the registry by September 2020.

Supporting people living with blood cancer through the transplant process and providing information and education on stem cell transplants is an important part of the Leukaemia Foundation’s services. This partnership enable us to pursue opportunities to improve donor matches and increase the pool of viable donors.

Younger donors result in better outcomes for patients, hence the need for 18-30 year-olds to register, which increases the chances of finding the best possible match.

Ethnic diversity is also important as patients are more likely to find a match with a donor from the same ethnic background.

And young men make particularly important donors as they often weigh more, so they literally have more (stem cells) to give!  But this group only makes up 4% of donors on the registry.

To add someone to the Registry’s database and potentially result in saving someone’s life, it takes just five minutes to do the initial screening, through a cheek swab.

Go to lf.strengthtogive.org.au and register – answer a few questions and wait for your swab kit to arrive – easy!

PBS listing of blinatumomab extended  

PBS listing of blinatumomab extended  

Australians with ALL and minimal residual disease (MRD) can now access blinatumomab (Blincyto®) on the Pharmaceutical Benefits Scheme (PBS)  following an extension to the drug’s listing last year.

It is expected that 86 people with ALL are eligible for the drug that prior to PBS listing would have cost them up the $150,000 per treatment course.

In May 2019, the Pharmaceutical Benefits Advisory Committee (PBAC) recommended blinatumomab also be listed for people with B-cell precursor ALL in haematological complete remission with MRD following induction chemotherapy.

And on 1 December 2019, the treatment became available for these people on the PBS.

The PBAC’s recommendation was based on updated data from the BLAST study  that further indicated blinatumomab may be associated with an overall survival advantage.

Blinatumomab is a bi-specific T-cell engager (BiTE) that enables a patient’s T- cells to recognise malignant B-cells.

Prior to Amgen’s first submission for a listing of blinatumomab at the July 2016 meeting of the PBAC, the Leukaemia Foundation surveyed a small number of people with ALL who had received blinatumomab on their personal experiences with the treatment. Their responses were included in comments the Leukaemia Foundation provided to the PBAC in February 2019 in relation to Amgen’s submission for blinatumomab for the treatment of ALL, for consideration at the March 2019 meeting.  The PBAC deferred its decision and reconsidered the submission in July 2019, making a positive recommendation. 

Understanding immune system behaviour in blood cancers

Understanding immune system behaviour in blood cancers

Making a difference to the lives of her patients is why Dr Wei Jiang gets up each morning.

Dr Wei Jiang
Dr Wei Jiang.

Dr Jiang, a Leukaemia Foundation and Haematology Society of Australia and New Zealand (HSANZ) PhD 2019 scholarship grant recipient, is running two clinical trials to uncover how targeted therapies can alter the immune system to treat blood cancer.

Based at The Westmead Institute for Medical Research (Sydney), Dr Jiang is currently making the transition to full-time research after a decade working as a clinician.

“I chose to be a blood specialist and to study blood cancers because I discovered during my haematology training that making a difference in the lives of my patients was my reason for getting up each morning,” said Dr Jiang.

“Haematology is a rapidly changing field and I want to be a part of the science that changes people’s lives.”

The grant funding* for her project, Clinical safety and efficacy of T-cell immunotherapies for infection and malignancy, allows Dr Jiang to run two therapeutic trials which will have significant clinical benefit for patients who take part.

“One trial involves the use of a new type of engineered immune cell, called CAR-T (chimeric antigen receptor T-cells) in the treatment of refractory B-cell leukemias and lymphomas,” said Dr Jiang.

“The other trial is looking at the use of pathogen-specific ‘smart’ T-cells in the treatment of resistant viral infections in patients who have had stem cell transplants.

“Both trials use innovative, cutting-edge therapies that will contribute to a fundamental shift in treatment approaches in this field.”

Dr Jiang said that while the project focuses on a new therapy, at its core is the study of the biology and function of different parts of the immune system, and how we can use genetically engineered cells to target blood cancers and infectious pathogens.

“My research career is focused on the immune system’s behaviour in blood cancers, after chemotherapy and stem cell transplantation,” said Dr Jiang.

“I am interested in how we can alter the immune system with specific targeted therapies to treat blood cancers, and the complications associated with existing cancer treatments.”

When awarded the PhD grant, Dr Jiang said she was “humbled andeven more excited to ‘crack on with it’”!

“My ultimate goal is to be part of the development and discovery of a new blood cancer treatment that is effective, safe and universally affordable, for not only a lucky few or those with refractory disease.”

One year into the project, the trials are well underway with evidence emerging that engineered ‘smart’ T-cells can be used effectively to target common viral infections such as cytomegalovirus and Epstein-Barr virus which are common post allogeneic stem cell transplantation.

“We have also found that giving these ‘smart’ T-cells early, following the detection of an infection, reduces the duration and morbidity associated with the infection, while being safe for the patient,” explained Dr Jiang.

“These experiments have shown that when following administration of targeted T-cells against a particular infection, the body not only accepts these ‘smart’ cells but starts to produce its own ‘smart’ cells. Preliminary results have shown that these ‘smart’ cells persist for a long time, in some instances many months, after the infection has cleared.”

Dr Jiang and her lab also are working on trials targeting cancer cells using T-cells in a similar way.

“These findings are exciting because they provide us with new and effective ways to treat infection and malignancy that will be beneficial to patients in the future,” Dr Jiang said.

*  Dr Wei Jiang received funding of $120,000 ($90,000 from the Leukaemia Foundation and $30,000 from HSANZ) over three years, from January 2019 to January 2022.

Meet our new chairman, Dr Carrie Hillyard

Meet our new chairman, Dr Carrie Hillyard

Leukaemia Foundation Chairman Carrie Hillyard
Leukaemia Foundation Chairman Carrie Hillyard

“It is with great pleasure that I joined the Leukaemia Foundation last year as Board Chairman, at such a pivotal time in the organisation’s history.

Having lived through a diagnosis of acute promyelocytic leukaemia (APML) myself and the disruption it brought to my life as I knew it, I have observed the Leukaemia Foundation’s work over many decades. I have been impressed by the strategic focus, unique offering and dedication of so many of the staff, members, volunteers and supporters over this time.

It’s an honour to succeed the long-standing and well-loved chairman, Beverley Mirolo OAM who led the Leukaemia Foundation through significant historical milestones steering the organisation to become the authority on blood cancer and setting us up to achieve our bold new goal of zero lives lost to blood cancer by 2035.

I feel deeply proud to be stepping into this role and to be leading the Leukaemia Foundation to achieve this. We couldn’t have dreamed of committing to such a bold goal without the generosity of our supporters. I’m excited to work with you conquering blood cancer.”

Hair Today, Gone Tomorrow

Hair Today, Gone Tomorrow

Wednesday 11 March 2020
Australia’s only national charity dedicated to help cure and conquer blood cancer, the Leukaemia Foundation officially kick starts the 22nd World’s Greatest Shave across the country from Wednesday 11 March.

This year, the event aims to raise $16.5 million to provide vital support for the 41 Australians diagnosed with blood cancer every day – that’s one person diagnosed with leukaemia, lymphoma, myeloma and other related blood disorders every 36 minutes.

Blood cancers are among the most frequently diagnosed and most deadly cancers in Australia. The latest statistics confirm that one in 10 Australians diagnosed with cancer will have a blood cancer, and approximately one in seven cancer deaths in Australia will be due to blood cancer[i]Open this document with ReadSpeaker docReader.

Leukaemia Foundation CEO Bill Petch said over the past decade, the incidence of blood cancer has grown by around 30%.

“We know that blood cancer is a significant problem in Australia. It doesn’t discriminate, it can develop in anyone, of any age, in any territory and at any time. Unlike other cancers, there are no screening programs available and no way to prevent a blood cancer through lifestyle change, ” Mr Petch said.

“Money raised through the World’s Greatest Shave is critical to ensure that Australians diagnosed with this deadly disease can gain the access they need to the best treatment, supportive care and trusted relevant information, regardless of where they live in Australia,” he said.

As the Leukaemia Foundation’s primary fundraising campaign, the World’s Greatest Shave continues to support and make a significant difference for Australians living with blood cancer. All of the Leukaemia Foundation support services including emotional, information, financial and practical support continue to be provided at no cost.

Last year alone, over 52,000 nights of accommodation were provided to ensure regional families have a home-away-from-home when needing to relocate to a major city for their vital treatment and close to 30,000 patient transport services were provided to and from medical appointments and cancer treatments.

With the support of the Federal Minister for Health Greg Hunt, the Leukaemia Foundation also established Australia’s first National Blood Cancer Taskforce, which includes 30 of Australia’s leading blood cancer experts and stakeholders. This year, the Taskforce will deliver Australia’s first National Strategic Action Plan for Blood Cancer, an evidence-based blueprint to improve survival and quality of life outcomes for people living with blood cancer.

“Thank you to everyone taking part in the World’s Greatest Shave for your support and generosity. Your brave acts of shaving, cutting and colouring your hair make a significant difference to Australian men, women and children living with blood cancer. We can’t do this without you!” continued Mr Petch.

It’s not too late to sign up or support this year’s Leukaemia Foundation’s fundraising efforts, simply download the World’s Greatest Shave app, sign up online at worldsgreatestshave.com or call 1800 500 088 for more information.

ABOUT World’s Greatest Shave

WHATThe Leukaemia Foundation’s World’s Greatest Shave began 22 years go in Lismore NSW and was inspired by a daughter’s love for her father who was battling leukaemia. Today, the event is one of Australia’s most-loved fundraising events. Every year, extraordinary Australians sign up to shave, cut or colour their hair to raise vital funds for the campaign.

Over the past three years, the Leukaemia Foundation’s World’s Greatest Shave has seen a significant increase in women stepping up and ‘rocking a shave’, a courageous and selfless act to support family, friends and loved ones affected by blood cancer. In 2020, this trend is set to continue with women making up close to 50% of all people registered to shave their head and embrace their bald beauty.

WHYBlood cancer is one of the most common cause of cancer death in Australia, claiming more lives than breast cancer or melanoma. Funds raised will help support local families affected by blood cancer through advocating for equal access to new therapies and treatments as well as providing educational, emotional and practical support such as transport and accommodation. All support and services are provided free of charge.

WHOOver 2 million people have participated in the World’s Greatest Shave. Some have a personal connection to blood cancer while others take part to challenge themselves for the greater good.

WHEN: World’s Greatest Shave event takes place during March 11 – 15, however you can sign up, participate or sponsor at any time during the year.

WHEREAcross Australia at home, work, school and in public community locations (see worldsgreatestshave.com/events for a list of local places to join)

HOWSign up now at worldsgreatestshave.com or call 1800 500 088

WHAT’S NEWOver 30,000 kilograms of hair is estimated to have been shaved and cut over 20 years. With ponytails over 20cm long going back to make wigs for cancer patients, in 2020 the World’s Greatest Shave has partnered with Sustainable Salons ANZ to ensure all hair can be re-used, with shorter hair donated to be used in ‘hair booms’ to soak up oil spills in ocean waters.

FUN FACTHundreds of sporting champions and celebrities have shaved, cut or coloured their hair throwing their support alongside every day Australians including Kerrie-Anne Kennerley, Steve Irwin with his family, Larry Emdur, Tex Walker, Shane Crawford, Andrew Symonds, Meshel Laurie, Channel 9’s The Block, Steve O’Donnell and Chantelle Ford (Blockheads), Radio HIT105 Breakfast presenter Abby Coleman and ABC Breakfast TV presenters Paul Kennedy and Nate Byrne.

[i]Open this document with ReadSpeaker docReader [i] https://www.aihw.gov.au/reports/cancer/cancer-data-in-australia/contents/summary

Brett’s well and back living in the moment

Brett’s well and back living in the moment

Brett Conley, centre front, with her family on her 27th birthday in 2018.
Brett Conley, centre front, with her family on her 27th birthday in 2018.

Before she got sick in 2018, Brett Conley was “living a really great life” with “a great job, great friends, a great new boyfriend, and a great family.

After completing her chartered accountancy studies and working in corporate banking at ANZ in hometown Brisbane, she had moved roles with her employer to Melbourne early the previous year.

“It was a really exciting time,” said Brett.

She was establishing a new friendship group, had been dating Ken Nguyen for six months, and had been promoted to a manager role at work.

Only a month later, on Valentine’s Day 2018, everything in Brett’s life changed when she was diagnosed with ALL, aged 26.

That day she found out the symptoms that had plagued her for several weeks were signs of blood cancer. And that night, instead of enjoying a romantic night out with Ken, she was in hospital and was told she had leukaemia.

“It was pretty scary,” said Brett, now 28.

“Nothing really bad had ever happened to me, or my friends or family,” she said. And apart from visiting elderly relatives, she had never been to hospital.

The lead-up to Brett’s diagnosis with ALL

After going home for Christmas 2017, Brett had returned to Melbourne and was travelling with work when she got a “really bad cold” in early-January.  She thought she was rundown.

When she developed a “terrible cough” and went to a pharmacy to get some cough medicine, the pharmacist said, ‘no cough medicine’s going to treat that, you should go to hospital – it’s a pretty serious cough’.

“I said, ‘I’m alright, it’s just a cough, I’ll get over it, it’s not big deal’,” said Brett. “So weeks kind of went by, and I started to get really tired.

“It got to Australia Day weekend and I got really sunburnt on my chest, so didn’t realise I had a rash as well – little tiny purple dots. Then I realised as time went by that the rash was also on my legs.

“I thought this was a bit weird,” said Brett, who also thought it weird when she started sweating at night.

“Then my teeth and gums started to bleed, and I started to get nosebleeds.

“A few days before I was diagnosed, I went home after work and was pretty much unable to get upstairs without feeling really tired. I thought that was a bit odd, as I am a relatively fit young person.

“It was getting hard to get up in the mornings and I was getting an Uber to work because I couldn’t face the tram.

Valentine’s Day 2018 – when Brett was told she had leukaemia

“On the morning of the 14th, I went to work feeling pretty lousy, sat down at my desk and blew so much blood out of my nose, I thought – this isn’t right,” said Brett, so she went to a GP near work.

“I didn’t tell anyone I was going. I thought it’d just be a 15-minute appointment and I’d be told I had a sinus infection and to take a few days off work.

“I explained my symptoms and he said I needed to go straight to emergency as my symptoms were pretty common for lymphoma or leukaemia.

“I thought – oh, cancer – that doesn’t sound good, and got really upset.”

Brett asked the GP to call her parents in Brisbane. He explained the situation and suggested they get on the next flight down. Then Brett called her boss at work, and Ken.

“I said, ‘I’m going to hospital – I don’t think it’s too urgent’.”

When Brett asked the GP if she could “swing by home to get some pyjamas and my toothbrush” during the 10-minute cab ride to hospital his reply was, ‘I honestly think you should go straight there’, which she did.

At the private hospital, the results of a blood test indicated blood cancer and she was immediately transferred to The Alfred by ambulance.

“I stayed there for five weeks. I never went home to pack a bag or get any belongings,” said Brett.

She was initially told she had ALL B-cell Philadelphia chromosome negative.

“They said that was a good one to get because it was relatively treatable with just chemotherapy.”

But several days later, this diagnosis was changed to ALL B-cell Philadelphia chromosome positive which was “a bit of a shock”.

“It’s a rare type of ALL and it’s even more rare in young adults,” said Brett.

“That was a massive change in the treatment, and I would have to have a stem cell transplant.”

Brett started treatment with high dose steroids before having high dose chemotherapy – the GRAAPH 2005 protocol with imatinib, which involved weekly chemotherapy and weekly lumbar punctures.

Brett during treatment in the hospital
Brett during treatment.

She went home for a week over Easter before having another intense round of chemotherapy, followed by oral maintenance chemo which she was able to have at home.

“I was getting ready to have my transplant,” she said.

The search for a matched unrelated stem cell donor

Brett is an only child and when she was diagnosed the search began for a matched unrelated donor.

“It was a pretty stressful time, being in limbo and trying to stay in remission while they found a donor,” said Brett.

At the end of April, Brett got “really good news” – a German donor had been found on the international bone marrow registry and her transplant was set for early-June.

Then, in mid-May she found out that donor wasn’t eligible to donate. Luckily, she had a second match, so the transplant was pushed back.

“It was stressful for my mum and dad as well. They had moved into an apartment next to the hospital, so were really close by,” said Brett.

“I waited six weeks to hear back about my other donor. I was told he was in the U.S. – Washington DC I believe, and that he was really young – 20, I think.

“It definitely put me at ease.”

Brett was “quite well” before her transplant.

“I was active, my hair was growing back and things were going well, so I really wanted to get it over and done with.”

Brett’s transplant was on 19 July 2018. She then had more chemotherapy to suppress her immune system, on Days 2, 4, 6, and 8, and had “fairly standard symptoms afterwards”.

Brett and Ken together in hospital during her treatment, 2018.
Brett and Ken together in hospital during her treatment, 2018.

“I got really bad mouth sores… my mouth was pretty much a big blister. I was quite sick and wasn’t eating, so they put me on TPN food supplements.”

On Day 11, Brett’s cells grafted and she went home on Day 26 post-transplant, but only for one day.

She got graft versus host disease (GVHD) on her hands, which appeared as a “really bad rash”, so she went back to hospital for several days for treatment with high dose steroids. The rash went away after a few days and to counteract the GVHD, she continued the steroid treatment for five months.

“That was the only time I had GVHD. I was very lucky,” said Brett.

Fertility preservation to give Brett the potential to start a family in the future

Back in May 2018, while on maintenance chemo, Brett had one of her ovaries removed and frozen.

“This is a new type of fertility preservation, usually only for oncology patients,” she said.

“Because of the urgency with ALL to start treatment straight away, you don’t have an opportunity to harvest any eggs.

“In recent months I’ve been back to the IVF clinic, and in the future, once I’m ready to have kids, they’ll look at reinserting the tissues on my existing ovary.

“You can develop or regain some sort of ovarian function for a short period of time once they do that,” she explained.

“Going back to the fertility specialist was a bit confronting. I already knew I was infertile and going over it again I found quite upsetting, especially when people at work and your friends are getting married and having kids.

“It’s going to be a big effort to have kids in the future.”

Brett with Ken when he received his fundraising award at World’s Greatest Shave in 2018.
Brett with Ken when he received his fundraising award at World’s Greatest Shave in 2018.

Brett’s slow return to her new normal

Brett describes her life now as “about 95% normal”.

“Things slowly go back to normal but unfortunately, it never goes back to normal 100%,” she said.

“In the middle of last year (2019) I found out the steroids had caused osteoporosis, which was a bit upsetting. I didn’t expect that to pop up in my 20s.

What has returned to normal for Brett is her day-to-day life, working and socialising.

“But things pop up and you realise you have been through something quite traumatic and you’re still processing that and the ramifications of the treatment as well.

“My hair’s still growing back, and I’ve put on a lot of weight because of the steroids. I never chose to look or feel different. It was never in my control. That’s hard for a young person in a world so caught up on appearance.”

A new appreciation of life’s fragility

Having faced the challenges of diagnosis and treatment, Brett is now more appreciative of how fragile life is and how difficult life can be for most people. Knowing now that life can quickly be taken away by no fault of her own, she ensures her choices made day-to-day and long-term align with the life she wants and what she wants to achieve.

“I don’t know what the future is going to hold for me,” said Brett.

“If I can do the right thing by eating well and exercising, then I put myself in the best position to face any future adversity because of my health.

“I really value the relationships I have and invest in every part of my life, rather than going through life on autopilot.”

While it took Brett “a good year” to get back on her feet, she was fit enough to return to work nine months after her transplant. An exercise physiologist helped her regain the muscle and general conditioning she had lost.

She’d been at ANZ for a month when she changed jobs after getting the dream job that she had envisioned for herself at university. She got a finance job in fashion and retail, at Country Road.

Brett and Ken live together now and “things are good”.

“We’re going back to the relationship we should have had in those early days, when life was a bit lighter.

“We’re doing fun things – weekend activities, going on holidays – that aren’t dictated by my health and we’re trying to live in the moment.

“In the last six months I’ve been happy in myself and well enough to go back to living life like I would have beforehand.”

And last Christmas, the couple went to New York for two weeks.

Brett Conley and Ken Nguyen during their Christmas 2019 holiday in New York.
Brett Conley and Ken Nguyen during their Christmas 2019 holiday in New York.

“It was the thing we talked about in hospital – that when I was well enough, we’d go to New York. It was a really big two weeks and I enjoyed every moment of it.”

Brett has corresponded with her bone marrow donor after receiving a letter from him in June 2019, which took five months to reach her!

“In the future it would be absolutely my dream to go and meet him and thank him for the selfless act that he did for me… giving life to a stranger across the world.”

Support from and support for the Leukaemia Foundation

The Leukaemia Foundation’s blood cancer support coordinators visited Brett twice a week while she was in hospital.

“They gave me really good, easy-to-understand, realistic answers to questions I had, such as – what does life look like after a transplant?

“Doctors say ‘you’ll be cured’ but that doesn’t mean anything. What’s your quality of life? Can I go back to work? Do people live after a transplant?

“There are some really easy questions to vocalise that are very difficult to answer,” said Brett.

Afterward the transplant Brett to workshops with her mum about getting back on your feet.

“Once I left hospital, it got pretty lonely. When you’re not going to work you don’t have anyone to talk to. It was nice to have those workshops to look forward to.

“And the Leukaemia Foundation recommended an oncology psychologist for young adults which was super helpful. I went to see her for a while.”

When Brett lost her hair, soon after her diagnosis, Ken shaved his head for World’s Greatest Shave in 2018.

“We initially thought we could raise $5,000 and we ended up raising $26,000,” said Brett.

“I was so proud. And it gave me something to think about other than being sick when I was in hospital… who we could ask for a donation.

“Ken got the award for second highest fundraiser in Victoria and we went to the awards night. It was just before my transplant and it was really nice to talk to other people there.”

And at last year’s Light the Night in October, Brett was the white lantern ambassador at the Federation Square event in Melbourne.

“That was a massive moment – it was just amazing. We were so happy for days afterwards.

“I’ll definitely be there every year, to just be with other people who have a connection to the disease. It was just a lovely experience,” said Brett.

Leukaemia Foundation helps fund more priority driven research

Leukaemia Foundation helps fund more priority driven research

Wednesday, 4 March 2020

Research into the side effects of bone pain in childhood leukaemia patients and the use of novel therapies to help detect relapse in myeloma patients will be funded through a partnership between the Leukaemia Foundation, Cancer Australia and other cancer charities.

The two innovative projects will benefit from the funding as part of the Australian Government’s Priority-driven Collaborative Cancer Research Scheme (PdCCRS). This year the work of two early career researchers in South Australia and Western Australia have been co funded under the program which aims to nurture early career medical researchers.

Leukaemia Foundation CEO Bill Petch said supporting promising and exciting medical talent was vital to keeping researchers on Australian soil.

“The Leukaemia Foundation’s commitment to these PdCCRS projects is part of our ongoing, national research strategy to fund innovative projects in areas where a need for research to be prioritised has been identified,” he said.

The PdCCRS allows Cancer Australia funding partners to join together to fund projects that have been identified as cancer research priorities. By pooling resources through the PdCCRS, organisations ensure that every dollar committed through the program goes directly to funding research.

“The partnership ensures research supported by the Leukaemia Foundation is high quality, and that Australian researchers have the opportunity.”

“This funding is part of the Leukaemia Foundation’s commitment to fund early career researchers and part of the $50 million National Research Program which began in 2002.

The successful funding candidates are:

  • Dr Laurence Cheung – Telethon Kids Institute. Perth, WA

Total PdCCR grant: $200,000 over two years

Leukaemia Foundation contribution of $67,000

Project Summary

Many children diagnosed with leukaemia suffer bone pain. Skeletal defects and reduced bone formation are also commonly observed, suggesting leukaemia cells can alter the surrounding bone cells and possibly favour leukaemia development in the bone marrow.

It is well documented that the immediate environment (neighbouring cells) of cancer cells influences many stages of cancer progression.  Dr Cheung’s team has established preclinical models that reproduce the changes in the bones of children with leukaemia.

This research will study the interaction between bone cells and leukaemia cells, and evaluate if restoration of a healthy bone marrow environment improves treatment outcomes. A combined approach that targets both cancer cells and neighbouring cells has the potential to translate into a highly effective strategy to treat the children diagnosed with leukaemia.

  • Dr Melissa Cantley – South Australian Health and Medical Research Institute (SAHMRI). Adelaide, SA

Total PdCCR grant: $200,000 over two years

Leukaemia Foundation contribution of $67,000

Project Summary

Multiple myeloma is a deadly blood cancer that is diagnosed in 140,000 people worldwide each year. It is preceded by a pre-cancerous condition, known as smouldering myeloma.

Patients who have smouldering myeloma are often difficult to diagnose as they do not exhibit the debilitating bone disease and other symptoms that are characteristic of multiple myeloma.

Every year, 1 in every 10 smouldering myeloma patients will develop multiple myeloma; however, at this time there are no diagnostic tests that can be used to identify those patients that are going to develop multiple myeloma.

Early detection of smouldering myeloma patients at high-risk of developing multiple myeloma, is critical to enable early treatment in order to maximize their chance of survival. Dr Cantley’s team will use a state-of-the-art technique known as proteomics that allows them to identify protein markers in the blood that are uniquely present in high-risk smouldering myeloma patients.

They hope that these studies will enable the development of new diagnostic tests to identify those high-risk patients to enable them to receive early treatment to improve their chance of survival.

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