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
The Australia New Zealand Sarcoma Association webinar series 2020
July is global sarcoma awareness month, and the Australia New Zealand Sarcoma Association, the peak scientific body for the sarcoma community. has created a series of webinars, covering a broad range of topics tailored to sarcoma patients and families.
These informative webinars are a must for sarcoma patients and their families past and present.
To register for these free webinars press on the following links:
6 July | 2.30pm – Clinical Trials –Why I Should I Participate in One?
Registration link – https://register.gotowebinar.com/register/113786666940124428
16 July | 12pm – Managing Practical Issues while Undergoing Sarcoma Treatment.
Registration link – https://register.gotowebinar.com/register/4502867760231478540
23 July | 12pm – Survivorship – Life After Sarcoma Treatment.
Registration link – https://register.gotowebinar.com/register/819712714390992140
Facebook event page link (share using CRBF Facebook) – https://www.facebook.com/events/1627055397467781)
The Australia New Zealand Sarcoma Association annual scientific meeting was held in Canberra on 11th and 12th of October, bringing together a collection of the most stellar medical and scientific minds, all working toward a cure for sarcoma.
The conference showcased the ground breaking developments in research which will and in some cases are, of benefit to sarcoma patients globally, thus providing untold hope for the future.
It was an enormous privilege for our own Mitchell Rice-Brading to open the conference, with a passionate and heartfelt speech which was central to his own experiences of losing his younger brother Cooper, to sarcoma.
My name is Mitchell Rice-Brading, and I am the brother of the young man whose name our Foundation proudly bears.
I would like to begin today by extending my deepest gratitude to ANZSA, and in particular, Dr Denise Caruso, for having me speak this morning, and I would like to impress the great privilege that I personally attach to the opportunity.
I’d also like to acknowledge the work that goes into both organising an event of this magnitude, and to making the effort to attend. As a recently graduated uni student, I am currently working 20 hours a week as a bartender. I have just returned from the World Cup in Japan, and has another trip planned to Thailand at the end of the month, I can empathise with all of you in the room. We’ve all made sacrifices to be here today.
On a more serious note, my family and I find ourselves as incidental members of the greater sarcoma community. It was unplanned, and unexpected. Unlike us, most of you in this room have chosen to devote your time working to improve the plight of those touched by a sarcoma diagnosis. We are humbled by the selflessness of choosing such a career path.
We have come to realise, that with the heartache and devastation that is a sarcoma diagnosis, it has also become the driving force for what ultimately brings us here today, motivated to instigate critical and positive change.
The gravity of losing my brother to this cancer is something I find difficult to articulate. I can never see a day when the senseless loss of Cooper’s life will be something I can rationalise. Tragically, my brother became one of the many real faces of sarcoma, and now I am all too aware of what sarcoma represents, and why conferences such as this, are yet another crucial step forward.
Because, for all the scientific complexities, there is one unavoidable constant that follows a sarcoma diagnosis – pure devastation.
Walking the road beside Cooper, I felt helpless. Sleepless nights pondering the future; The ever- present guilt because I was not the one afflicted; and the unwavering desire to say and do the right things to provide comfort, but ultimately feeling like nothing was ever enough.
And then there was the soul-crushing final act, helplessly witnessing the brother I grew up with, regress into a mere shell of his larger than life self, when treatment options were exhausted. Sadly, this an all too regular outcome for young sarcoma patients.
Nonetheless, my family were left with a choice: Sit on our hands and do nothing, or perpetuate Cooper’s memory and his vision, by joining with the remarkable group before me, and make a contribution no matter how small.
It is of note that as recently as three and a half years ago, when Cooper was first diagnosed with osteosarcoma, treatment options were severely limited. This, of course, was no reflection on his stellar medical team – it is simply the way it was.
Similarly, a body of up to date, reliable, and user friendly information for patients and their families proved impossible to source. In our family, and I suspect in others, we introduced one policy: No Internet. The information that presented itself after one google search was astoundingly outdated, and generally soul-crushing for a recently diagnosed 17 year old boy.
Compounding this, was the fact adolescent patients were, and are, routinely treated in adult facilities, some barely past the age of 14. I dare say it won’t shock you to know, the needs of a teenage boy are vastly different to those of a 70 year old man.
Just over three years later, and the positive change is palpable. The emergence of future adolescent sarcoma centres, such as the one proposed for Chris O’Brien Lifehouse; dedicated sarcoma nurses helping patients through the medical minefield; imminent clinical trials for a number of sarcoma sub-types; cutting edge genomic sequencing programmes and trials; peer reviewed studies published in significant medical journals – the list goes on…
This, together with the highly credible and relevant information available on the new ANZSA website, has indeed removed a lot of angst out of those first weeks post-diagnosis. The change is visible and there for all of us to see, and is largely attributed to the persistent work of a number of those in the room today.
We are truly privileged to be working with some of the most distinguished clinicians and scientific researchers in this field. Then there are those who are driven by tragedy, who work tirelessly for change, and have created the most outstanding legacies to the loved ones they have lost, through fundraising and awareness campaigns.
I look around this room, and it is difficult not to be humbled and somewhat moved. You inspire us as the relative new kids on the block, to adopt the patience, resilience and determination you have all shown over many years. They say Rome wasn’t built in a day, and nor will sarcoma be cured in a day, and it is these qualities in each of us, which will ultimately lead to critical advancements.
I don’t necessarily have what it takes to be a medical oncologist, nor have the deep biological knowledge required for meaningful research. But all of us in the room today are fighting sarcoma as a team, and all players in a team have a role. At the Cooper Rice-Brading Foundation, our role is clear: to assist in facilitating your work, and to support you in future initiatives. And when we look at the progress we’ve already made, it is simply difficult not to be inspired, and to push through on the difficult days.
From all of us at CRBF, we extend our deepest gratitude to each of you for the outstanding work you continue to accomplish in this field, and for openly accepting us as a small part of this stellar team.
All of us here today are aspiring to make sarcoma history, and we’re not giving in.