The innovative and highly successful Zero Childhood Cancer program (ZERO) has this week received $67 million collaborative funding from the Federal government and Minderoo Foundation, to provide all children and adolescents with cancer the greatest chance of survival.
ZERO has changed the way diagnosis and treatment occur for children with the most aggressive cancers or for those with relapsed cancers. New funding committed by the Commonwealth Minister for Health, the Hon Greg Hunt of $54.8million together with $12.2million from Andrew and Nicola Forrest’s Minderoo Foundation will ensure ZERO is expanded, and will eventually be offered to all children diagnosed with cancer by 2023.
Each year, almost 1000 children and young people are diagnosed with cancer around Australia, and is unfortunately still the most common cause of death from disease
On Friday the 21st February, a young 20 year old sarcoma patient underwent a life changing egg harvesting and cryogenic preservation at the Alexandria Day Hospital in Sydney, under the watchful eye of Professor William Ledger. Whilst this may not seem remarkable to those who are fortunate enough not to have to explore such avenues, this young woman is representative of many young cancer patients who slip through the cracks prior to undergoing onerous chemotherapy and surgical regimes to treat their respective cancers.
This process is expensive and it is challenging at times for those who find themselves in need of seeking fertility treatments, in order to have a child. It can be argued those with cancer have already been through quite enough without the added burden of infertility. More often than not the financial strain of this process becomes an enormous burden, preventing many from having children. The emotional and psychological impact of infertility can be immense, and this can me magnified when the patient is young, and has suffered a cancer diagnosis.
This situation is about to change. A national “pioneering service to transport, freeze and store reproductive tissue for young cancer patients” initiated by the Sony Foundation stands to revolutionise this process. “The service – the first of its kind in Australia – will enable medical professionals nationwide to offer free fertility-preserving treatment to youth cancer patients aged 13 – 30 years.”
A gap in the health system for young people with cancer, had been preventing access to affordable fertility preservation options, and this was identified by the Sony Foundation. “Alarmingly, Currently, only 4 per cent of young women and 1 in 4 young men undergo fertility preservation before chemotherapy, despite research showing infertility is the number one issue that has an identified impact on a young person’s quality of life following cancer. ”
CEO of the Sony Foundation, Sophie Ryan said: “Sony Foundation’s funding will ensure this innovative fertility service is available for all young people diagnosed with cancer. No longer will young people miss out on this treatment due to barriers such as lack of access for regional patients, cost and time restrictions. But more importantly, providing access will give young people facing cancer hope and the opportunity to focus on life after cancer.
The team at the National Ovarian and Testicular Tissue Transport and Cryopreservation Service (NOTTCS) led by Professor Kate Stern, has a demonstrated history of fertility preservation, egg and sperm freezing, counselling and support of patients affected by cancer and fertility issues. “This service will enable tissue to be collected, transported and cryopreserved in Melbourne from patients right around Australia. It will give access to state-of-the-art fertility preservation to young people who might have thought that it’s the end of the road for their fertility, said Professor Stern”.
The Sony Foundation’s mission is for 100% of young people who are diagnosed with cancer to be offered fertility preservation that’s free and easily accessible.
CRBF wish to extend our deepest gratitude to Professor William Ledger, Professor Kate Stern, Dr Henry Liberman, The Alexandria Day Surgery Hospital, Kerri and the staff at IVF Australia, Bondi, and Emma Pechey from the Sony Foundaiton.
For further information on the Nationals Ovarian and Testicular Tissue Transport Service:
Call: (03) 83453227
IVF Australia https://www.ivf.com.au/clinics/bondi-junction-fertility-clinic
We congratulate Professor Michelle Haber, Children’s Cancer Institute Sydney, as a deserving recipient of the 2019 ACRF annual grant for her ground breaking programme incorporating the liquid biopsy.
Reducing the devastating impact of cancer treatment on children
The current precision medicine treatment recommendations for children are based on an invasive and often painful procedure – tissue biopsy.
The $3.5 Million grant will fund next-generation sequencing technology to develop highly sensitive and minimally-invasive tests for children with cancer- using blood and body fluid samples.
This technology has the potential to benefit paediatric sarcoma patients nationally, and CRBF will be partnering in this exciting initiative over a three year period, to provide a dedicated sarcoma researcher, to work in tandem with this initiative. The programme is the work of Dr Emmy Fleuren, who has incepted the sarcoma specific Phosphoproteomic study, and will work in tandem with the work of Professor Haber, in the area of liquid biospsy.
Read more about the liquid biopsy programme
When Cooper was in the hospital fighting for his life in Australia, the 18-year-old was extremely curious about why there were no new treatments. He asked his doctors’ many questions his dad Colin Brading noted. Cooper passed due to the bone cancer, tragically, but his family set up a foundation to help search for a cure to the disease—it was what Cooper wanted. His life force lives on in his foundation which will persist from now onward to help others that were in his position.
Enter Interleukin-23 (IL23)
Researchers at Garvan Institute of Medical Research uncovered that the immune molecule is key to the growth of the tumor and targeting it in studies successfully shrank cancer in mice reported 9 News in Australia. Immunotherapies targeting IL23 represent an important push in the fight against autoimmune diseases such as arthritis, inflammatory bowel disease, and the skin condition psoriasis. Professor David Thomas with Garvan Cancer Research and Director of The Kinghorn Cancer Centre noted: “When we blocked IL23 or knocked it out in the mouse in this particular case, we stopped tumors from development.”
Planned Sarcoma Study Powered by the Spirit of Cooper Rice-Brading
The Cooper Rice-Brading foundation is helping to pay for clinical research along with the Garvan Institute of Medical Research to explore existing IL23 therapies for this form of bone cancer. Funds inbound will go towards clinical trials which will commence before the second half of 2020 reports 9 News. Professor Thomas noted, “We hope to treat up to 32 people with advanced, incurable sarcomas.”
The Cooper Rice-Brading Foundation
For those that want to contribute to keeping Cooper’s vision alive, they can follow the link to the Cooper Rice-Brading Foundation and contribute so that we can be certain that this important clinical trial will occur. Brading’s dad stated, “it is Cooper’s vision becoming a reality.” See the link for the donation page.
The Garvan Institute of Medical Research
Garvan Institute of Medical Research is a leading, multi-disciplinary biomedical research institute in Darlinghurst, Sydney. With some of the brightest minds and best technologies on the planet, they like to look at the big picture of health and disease.
They were founded in 1963 by the Sisters of Charity as a research department of St. Vincent’s Hospital. Now one of Australia’s largest medical research institutions with approximately 750 scientists, students and support staff.
Major focus areas for investigational research include cancer, diabetes, osteoporosis, Alzheimer’s disease, Parkinson’s disease as well as other autoimmune disorders and asthma. They specialize in genetic and molecular technologies and emphasize collaborative research.
In 2014 the institute became part of an elite group that has the ability to sequence the human genome at a base cost below $1,000 each ($1,000 genome) when it purchased the next generation of genome sequencing technology, capable of sequencing 350 genomes a week.
LTD Changes Correlate With OS in Localised High-Risk Soft Tissue Sarcoma
A percentage change in longest tumour diameter (LTD) of patients with localised high-risk soft tissue sarcoma (STS) who were treated with neoadjuvant chemotherapy was found to correlate with overall survival (OS), according to updated results from a phase 3 trial presented at the 2020 ASCO Virtual Scientific Program.1
Of the 325 patients who enrolled on the study and were determined to be evaluable for response, 181 received neoadjuvant chemotherapy; 92 of those patients received standard chemotherapy comprised of an Epirubicin and Ifosfamide, while 89 received histology-driven chemotherapy.2 The other 144 patients received concurrent chemoradiotherapy and were excluded from the analysis. RECIST data were available for a total of 176 patients, 90 of whom were in the standard arm and 86 of whom were in the investigational arm.
Results demonstrated a significant link between changes in LTD and OS rate in patients with STS. Specifically, the correlation between survival and response was observed in the overall patient population as well as within the standard and investigative cohorts. Patients in the overall population who experienced any amount of reduction in LTD (n = 101) were noted as having a better prognosis than those who experienced no changes (n = 28) or had an increase in LTD (n = 52). Percentage changes in LTD were also associated with OS within the standard (log-rank, P = .023) and the investigative arms (log-rank, P = .053), as well; however, different patterns were observed.
For the analysis, investigators set out to determine the prognostic relevance of percentage changes in LTD in patients with STS who were treated with neoadjuvant chemotherapy. In the trial, patients with localised high-risk STS, either of the extremities or the trunk walls, and who had been diagnosed with myxoid liposarcoma, leiomyosarcoma, synovial sarcoma, malignant peripheral nerve sheath tumour, or undifferentiated pleomorphic sarcoma were randomised to receive either 3 cycles of the neoadjuvant standard regimen or the histology-tailored regimen.
Notably, patients with myxofibrosarcoma, pleomorphic liposarcoma, pleomorphic rhabdomyosarcoma, or unclassified spindle cell sarcoma were prospectively registered and received treatment with the standard regimen.
Percentage changes in LTD were found by evaluating these levels at baseline and after 3 cycles of treatment with either regimen before surgery. Investigators evaluated OS in both groups post-surgery through the use of Kaplan-Meier estimates and log-rank tests. Then, they looked for cutoffs that would be allow them to determine prognosis with either an increase or reduction in LTD by applying a proposed change-point method.
Further results from an unplanned analysis within the study were also reported. For this effort, investigators applied cut-point methodology to establish non-significant optimal cutoffs with regard to tumour reduction (20%, P = .14), as well as progression (25%, P = .47). Although the investigators were able to demonstrate a reasonable survival pattern through these cutoffs, a validation study of the proposed cutoffs is necessary in order to thoroughly evaluate them.
“In our study, RECIST V. 1.1 and any [percent] reduction in LTD of patients treated with neoadjuvant chemotherapy for localised high-risk STS correlated with the outcome,” the investigators wrote. “A [percent]variation cutoff both in increase and decrease in LTD able to predict the outcome could be identified only for the whole patients population. ”
- Stacchiotti S, Morosi C, Braglia L, et al. Prognostic role of % changes in longest tumour diameter (LTD) in localised high-risk soft tissue sarcoma (STS) treated with neoadjuvant chemotherapy in a randomised clinical trial. J Clin Oncol. 10.1200/JCO.2020.38.15_suppl.11558
- Localised high-risk soft tissue sarcomas of the extremities and trunk wall in adults: an integrating approach comprising standard vs histotype-tailored neoadjuvant chemotherapy. ClinicalTrials.gov. Updated May 13, 2019. Accessed June 19, 2020. https://clinicaltrials.gov/ct2/show/NCT01710176?term=NCT01710176&draw=2&rank=1
Resilient, courageous, humble and brave. Four words that we have come to know commonly relate to young sarcoma patients.
Throughout a cruel battle with osteosarcoma, spanning four and a half years, Tom Hardyman embodied each.
Tom lived his life to the full, despite the immense challenges he encountered at the hands of the insidious cancer, osteosarcoma. Tom lived a quarter of his brief life on a knife’s edge, often in unimaginable pain, and forced to contemplate his mortality at from the tender age of 16, when he was diagnosed. He did so with immense dignity and grace.
Tom’s battle with sarcoma was silent. It was relentless as it was selfless. He did not want others to be afraid or saddened by his diagnosis, and he fought hard to have his life remain normal in a highly abnormal situation.
While undergoing eight months of chemotherapy, he completed year 12 with outstanding results and received a university scholarship to study mechanical engineering. His dream career was to work as a Formula 1 race engineer and he was well on his way to achieving that goal gaining valuable work experience with V8 and Porsche supercar teams and more recently as the data engineer for Gilmour Racing’s Formula 3 team. All the while he privately managed the many challenges his sinister disease, sarcoma, threw at him along the way.
Throughout this time, Tom’s family continued to inspire us all. The love, grace, determination, and dedication they each showed Tom, is something that those of us who were privileged to witness their commitment, were left beyond words. Mum Leanne, dad Paul, sister Chloe, and partner Jess, were instrumental in providing years of behind the scenes love and support to Tom, while selflessly allowing him to run his own race. The extended family too numerous to mention, were as instrumental, and it soon became evident, this cohesive family was one very special team. You would walk the earth to find a family more committed to their precious Tom.
The Summit for Sarcoma 2019, is a shining example of the family’s ability to think of others, whilst in the midst of their own private hell. Respecting Tom’s wishes for his battle to remain private, Leanne, his Uncle Andrew and cousin Ben, created a fundraiser which will see Andrew and Ben summit Mera Peak in the Himalayas, with all funds raised by this superhuman feat, to be directed to the QIMR, for research into osteosarcoma. Further to this, Tom’s Aunt Katie has donated hours of time and professional expertise to assist our work at CRBF, with Grandmother Jennie offering voluntary hours with fundraising events and networking with other families.
In view of this, it is hardly surprising the Hardyman family have asked for donations in lieu of flowers to be directed to the 2019 Summit for Sarcoma, to prevent other patients and families living the heartbreak they are forced to live. Click the link below for information
In late 2019, Tom’s future looked to be short, and in his distinctive style, despite his prognosis, and the unimaginable pain he lived with daily, he fulfilled a dream, of buying his very own McLaren car. In what appeared from the outside looking in as a “middle finger” to the cancer that was ravaging his body, Tom spent hours driving his bright orange sports car around Brisbane and beyond, and in doing so found unbridled joy. He also shared the joy of his car with many others including complete strangers. From the outside looking in, Tom was the envy of many. It just goes to show, we should never make assumptions about others, as we often just need to scratch the surface to reveal the true picture.
Living each day as our last is arguably a quality we only obtain, when there is a distinct possibility it could be. Tom Hardyman personified this, and in doing so, reminded us all of the precious opportunities life affords us. We are all currently traversing a testing period of our lives, and with so many restrictions in place, it is easy to dwell on what we can’t do, and neglect what we can do. But we must try to recognise the doors that have now opened in the current circumstances: We can spend time connecting with our family, we can study and read and learn things we wouldn’t have time for, and we can reflect on our own personal mental and physical health. We can make the most of every moment we have, just as Tom did during his inspirational journey.
From all of us at CRBF, we send our deepest and heartfelt condolences to Tom’s remarkable family and to his loved ones.
Two years ago, a remarkable young woman came into our lives at CRBF. Mikaila Brisbane was 22 at the time.
Mikaila had a smile that could light up a room, breathtaking beauty, a genuine love of others less fortunate, and a zest for life that was contagious. This young woman was a mother of two adorable toddlers, and the love she had for her children, her husband and her wonderful family was something to behold.
From the outside looking in, this young woman was living the dream. Married to her childhood sweetheart, two lively, healthy children, a family who adored her and the promise of a wonderful life ahead fulfilling a myriad of hopes and dreams.
Life however had other plans. Mikaila was diagnosed with Alveolar Soft Part Sarcoma (ASPS) in February 2017, after a lump was found while she was on the trip of a lifetime with her long time partner Harley, who proposed marriage. Her life became a living hell over three years, which saw her stage a courageous, valiant, and public fight against the cancer that had taken over an otherwise perfect life.
Alveolar soft part sarcoma is rare. There are approximately twenty cases diagnosed in Australia each year.
Mikaila chose to be very public with her treatment, surgeries, and all processes associated with this cancer, in an effort to heighten awareness and to promote early diagnosis. She also vowed to let those know who held positions of power, that this was not ok. Most importantly, she wanted to prevent other young patients going through the devastation of a sarcoma diagnosis.
Throughout her three year battle with this insidious disease, Mikaila’s one constant were her family. Her two precious children, Indie and Reef, her husband Harley, her devoted mum Lisa, her grandmother Anne, her brother Christopher, and her Dad Gary.
Reading through Mikaila’s social media posts provide a heart- wrenching insight into what it is like to be living with a terminal illness. This is magnified when the young woman in question is still classified as an adolescent herself, has two children under the age of five, and has recently married her childhood sweetheart.
At 24 your life is just unfolding, and dark thoughts about separation from your children should be the last thing on any young mother’s mind. For a stage 4 cancer patient – this is the stark reality.
Mikalia wrote – “Last night I woke around 1.30 am with an overwhelming amount of sadness, tears rolled down my face and my heart was aching. I thought about the fact that no matter how much I fight and no matter how desperate I am to survive, chances are my life will be taken from me and I’m going to leave my babies…”
“…and I would give anything to be on this earth with them until I’m old…
“To every mum and dad reading this I want you to know that every single moment whether it be watching your child sleep or picking your child up…or even a tantrum. Those moments we are all guilty of taking for granted – some parents are desperate to be able to do these things, and would do anything to have these moments…”
Today, her heartbroken family face their first day without their precious Mikaila, after her suffering came to an end on March 2, 2020. The grief they feel today, and will do every day moving forward, is something that can never be fully articulated. Another young life taken by this cancer, and another family left shattered in sarcoma’s wake.
Today the world is much poorer without you in it Mikaila. You are truly unforgettable.
“I’m literally willing to try ANYTHING to give me more time on this beautiful earth 🌏 I want to live until I’m old and wrinkly giving cuddles to my grandchildren.
I’m so lucky to have such a supportive family, without these guys I would crumble.I’m so proud of my babies, they have been extra snuggly lately and it melts my heart, princess indie reminds me everyday that I’m the best mummy in the world, it’s hard not being able to do things, watching others doing what I wish I could be doing, I don’t want to be fading away, I want to be up chasing after them, dancing in the rain & making mud pies after a storm.”
– Mikaila Brisbane – July 7th 2019
To read more about Mikaila’s remarkable life please go to her FaceBook page