CRBF Sarcoma Awareness Month

Sarcoma Awareness Month

CRBF Press Release

July is Sarcoma Awareness Month, and the Cooper Rice-Brading Foundation (CRBF) has once again joined the global initiative to raise awareness of sarcoma, a cancer that sadly shatters the lives of far too many patients and families. 

Each year, CRBF funds innovative research leading to a cure, and supports sarcoma patients from diagnosis throughout treatment and beyond. Throughout July, the Foundation’s efforts to spread sarcoma awareness are accelerated.

Sarcoma can affect all ages, but hits our young disproportionately hard.  Of all childhood cancers, one in five is a sarcoma, and survival outcomes remain amongst the worst of all childhood cancers. Yet, sarcoma receives less than one per cent of total cancer funding. 

This July, the Foundation is calling upon anyone impacted by sarcoma, to upload the #sarcomafootprint image to social media, which can be found on the CRBF Instagram (@crbfoundation) and Facebook pages, to highlight sarcoma’s devastating footprint.  

With each step forward, with time, and with carefully targeted funding and research, we can all fight sarcoma together and help to find a cure.

CRBF Chairman, Robert Beech-Jones said the Foundation is hoping to spread an important message during Sarcoma Awareness Month.

“It’s been an incredibly tough start to the year for all Australians, however, for some it’s been made even worse with the sarcoma diagnosis of a family member or friend. or the devastating passing of a loved one,” Beech-Jones said.

“Despite the outstanding efforts of many in the sarcoma community, survival outcomes and treatment options have not changed significantly in almost 40 years, while other cancers are making important inroads into finding a cure.

“Through more funding and research, we’re aiming to facilitate an eventual cure for sarcoma and to stop lives being cut short.

“We understand how difficult 2020 has been for most, but unfortunately cancer doesn’t slow during times of hardship, and each day more young people are being diagnosed with sarcoma.

“We’re hoping we can continue to help raise awareness of sarcoma, and to ensure more people are informed of its prevalence and severity.

“Please join us in using #sarcomafootprint this July by uploading a photo of the CRBF footprint, if you or someone you know has been impacted by sarcoma.”

For those living in Sydney, Melbourne, Adelaide, Brisbane and Gold Coast, keep an eye out for CRBF digital billboards on major roads promoting sarcoma awareness messages from July 6. The billboards were kindly donated to CRBF by QMS media, on behalf of Daniel’s Race for a Cure conducted by the Alchin family, in memory of Daniel Alchin.

To launch Global Sarcoma Awareness Month, CRBF, together with their West Australian counterpart, Sock it to Sarcoma!, have worked collaboratively to produce the podcast series: Let’s Talk About Sarcoma. Hosted by Cathrine Mahoney and Michael ‘Wippa’ Wipfli, the podcast will be available through Apple podcasts, or at crbf.org.au, with episodes set to be released on July 3.   This series will cover the expected, the unexpected and everything in between, of a sarcoma diagnosis.   Patients, families, clinicians and researchers will provide the raw and honest narrative.

Cooper Rice-Brading sadly lost his brave fight against bone cancer in 2017, just 18 months after being diagnosed with osteosarcoma.

Prior to his passing, Cooper incepted the Cooper Rice-Brading Foundation to raise much needed funding for research into sarcoma, with the vision of improved survival outcomes and treatment options for all sarcoma patients.

ANZSA webinars for the month of July

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

https://www.facebook.com/events/649976632261568)

16 July | 12pm – Managing Practical Issues while Undergoing Sarcoma Treatment. 

Registration link – https://register.gotowebinar.com/register/4502867760231478540

https://www.facebook.com/events/263301371566637)

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)

 

 

Long tumour correlation


LTD Changes Correlate With OS in Localised High-Risk Soft Tissue Sarcoma

June 20th 2020
OncLive have last week reported a percentage change in longest tumor diameter of patients with localised high-risk soft tissue sarcoma, treated with neoadjuvant chemotherapy, were found to correlate with overall survival.

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, = .023) and the investigative arms (log-rank, = .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%, = .14), as well as progression (25%, = .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. ”

Reference

  1. 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
  2. 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

‘Let’s Talk About Sarcoma’ Podcast

In a collaboration to mark global awareness month, Sock it to Sarcoma and the Cooper Rice-Brading Foundation will host a series of free podcasts, to provide sarcoma patients and their families with a reliable resource from diagnosis to treatment and beyond. This series will be hosted by popular Sydney media identity, Michael ‘Wippa’ Wipfli and seasoned podcast presenter Cathrine Mahoney, creator of “So I quit my day job”.

In episode one we discuss how Sock it to Sarcoma and CRBF were incepted, and why, the need for what we do, our aims, and the current research we are funding. Special guest for the episode will be Dr Densie Caruso, CEO of the Australia New Zealand Sarcoma Association, discussing sarcoma. What it is, symptoms, and the importance of seeking professional advice, via a sarcoma specialist multi-disciplinary team.

Episode two will be broken into two parts, and will see patients from a cross section of sexes, age groups, and differing sarcoma subtypes, speaking about their experience from the moment they were symptomatic, diagnosis, treatment and beyond. This will be a raw account of each patient’s journey, with a special section on fertility and survivorship.

Episode three will see the spotlight shone on the families, friends, siblings and those who have tragically lost a loved one to sarcoma. This will provide a sensitive insight into managing the family dynamic leading up to diagnosis, throughout treatment and beyond. It will also explore grief, and the dire impact of losing a loved one to this cancer.

Episode four sees us finishing on a very positive note, when we hear from our leading researchers, clinicians, and a psycho-social researcher, covering a myriad of topics, which will provide hope for the future for all sarcoma patients.

Sarcoma & Covid 19 Govt guidelines


Information for people with cancer about COVID-19

Whether you have cancer currently, had cancer in the past, or are caring for a loved one with cancer, the situation may be more challenging than usual. Your treatment team and all those working in cancer support and care, are working as hard as we can to make sure that you receive the best treatment and outcomes possible.

People with compromised immune systems or pre-existing medical conditions, including cancer, may be at increased risk of contracting coronavirus (COVID-19) and increased risk of more severe infection.

Our knowledge about COVID-19 is changing rapidly. If you are receiving cancer treatment that suppresses your immune system and you develop a fever or respiratory symptoms, call your oncologist or a member of your treatment team, as you usually would if you develop a fever while on treatment. Be sure to follow their guidance on actions to take.

Everyone should practice good hygiene to protect against infection, including people who have had cancer

Good hygiene includes:

  • washing your hands often with soap and water for at least 20 seconds, or using alcohol-based hand sanitiser
  • using a tissue and cover your mouth when you cough or sneeze
  • avoiding close contact with others, such as touching
  • avoiding touching your eyes, nose and mouth.

People at increased risk of getting sick from COVID-19, such as people receiving treatment for cancer, and people living with metastatic cancer

As well as practising good hygiene:

  • ensure you have adequate prescription and over-the-counter medications
  • try to keep space between yourself and others
  • when you go out in public, avoid crowds, stay away from others who are sick, limit close contact and wash your hands often for at least 20 seconds, or using alcohol-based hand sanitiser
  • avoid non-essential travel.

If there is a COVID-19 outbreak in your community, stay home as much as possible to further reduce your risk of being exposed.

For family, friends and carers of people at increased risk of getting sick from COVID-19

Follow advice for good hygiene to protect against infection, including:

  • washing your hands often with soap and water for at least 20 seconds, or using alcohol-based hand sanitiser for at least 20 seconds, or using alcohol-based hand sanitiser
  • using a tissue and cover your mouth when you cough or sneeze
  • avoiding close contact with others, such as touching
  • avoiding touching your eyes, nose and mouth.

Avoiding contact with people in the community who are unwell.

There is no vaccine for COVID-19 yet.  However, this year, it is important to have your influenza vaccination as early in the flu season as possible.

Useful COVID-19 information links

Current status on COVID-19 in Australia – Department of Health (Australia)
COVID-19 Consumer messaging kit –   HealthDirect’s answers to questions and symptom checker
Advice for the public about COVID-19- World Health Organization

Coronavirus Health Information Line

Call this line if you are seeking information on novel coronavirus. The line operates 24 hours a day, seven days a week.

Phone: 1800 020 080

The Cancer Council Helpline

Cancer Council is a free, confidential telephone information and support service run by Cancer Councils in each state and territory. Call if you have a question about cancer, or if you’re seeking emotional or practical support.

Phone: 13 11 20

Follow us on Twitter @CancerAustralia to get news and updates.

Cancer Australia information hub about COVID-19 and cancer

Cancer Australia has released an Information about cancer and COVID-19 website hub, providing advice and information for Australians affected by cancer and a repository of up-to-date, evidence-based resources and guidance for health professionals and researchers from Australian and international organisations in the wake of the coronavirus (COVID-19) pandemic.

The website will be updated as new information is released.

Great people doing great things…

August of 2019 saw Swans rising star Nick Blakey shining a light on sarcoma in memory of  Cooper, who was his team mate and, at times, his on-field adversary. Nick did this by attending a training session at the East Sydney Bulldogs home ground at Trumper Park, a ground that holds so many memories of Nick and Cooper fiercely contesting the AFL ball during their junior years. In Nick and Coop’s teams over the years were many other young keen players, including Jack Weinert and his younger brother Tom, who were overseen as coach by their Dad, former Sydney Swans Chairman & President Peter Weinert, a quiet and understated man who had volunteered his time to coach the boys.

Peter contacted CRBF after he saw the article published on Nick’s visit, writing the following:  “By going to Trumper Oval when Nick did, it resulted in an article in the paper which may attract people such as me, who may like to contribute even in a very small way initially, to the incredibly important cause you are now involved in”.  Peter also shared a precious photo from those Easts Bulldogs days, and in an unexpected twist was pictured standing side by side with Cooper in a team photo which included his son Jack, as it turns out, he was Cooper’s original coach at Trumper (pictured).

By means of background, Peter, when Chairman and one of the private owners of the Club, played a leading role in the survival of the Sydney Swans in Sydney.  In 1992 he led the fight to save the Swans from extinction in Sydney, together with the great support of Mike Willlesee and Craig Kimberley after several years of on field turmoil and potential financial ruin. Along with Basil Sellers and John Gerahty, overseas based Owners also providing financial support, these five were inducted into the Swans Hall of Fame in 2015 under the Heritage Listing as “True Believers”.

In 1996, less than four years after the club faced extinction, the Sydney Swans played in their first AFL Grand Final under the then revitalised new Club administration, and Peter along with his co-Owners were permanently etched in Swans Club history.  After eventually serving as the No. 1 Ticket Holder for 11 years Peter became a Patron of the Swans, and it is indeed fitting the Player’s Club Lounge at the SCG bears his name. 

Through Peter’s understated generosity, together with Nick’s willingness to volunteer his time to memorialise his former team mate at Trumper Oval, Peter now holds the distinction of being our largest individual donor directly supporting clinical research into sarcoma.

It is difficult indeed to articulate our thanks to Nick and to Peter for their thoughtfulness, selflessness and generosity.

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Zero Childhood Cancer $67m boost


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

https://www.health.gov.au/ministers/the-hon-greg-hunt-mp/media/67-million-for-personalised-treatments-for-every-child-with-cancer

NOTTCS/Sony join forces


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

Email: NOTTCS@thewomens.org.au

IVF Australia https://www.ivf.com.au/clinics/bondi-junction-fertility-clinic