Amanda's next chapter with Stage 4 Cancer

Hi, my name is Sidonie and I am raising funds to support my very dear friend Amanda Phillips as she faces an epic new chapter with Stage 4 Cancer.

Amanda and I met in the Backstage Café at Adelaide University in the mid-1990s when she was studying Dance and I was in the basement studying Jazz. We’ve shared an enduring and rich friendship over the past 25 years to the extent that we are now - for better or for worse, in sickness and in health - chosen family.

Amanda’s personal fortitude is something of legend. To anyone other than her closest circle, it would likely come as a shock to hear that she has been undergoing cancer treatment every 3 weeks consistently since 2013. During this time, she has been at every school event for her beloved nieces and nephews, and every opening night for her esteemed colleagues, and has continued to make powerful contributions as an artist, creator, and leader in the Creative Industries.

In recent weeks Amanda has received the terrible news that her disease has progressed and is no longer being held in check. It will come as no surprise that she is facing this next challenge with her trademark determination and courage. Following the numerous scans and specialist appointments of the past weeks, Amanda has been forced to re-evaluate what the next 6-months will look like – with many variables in medical treatment ahead.

There is not a more generous friend, family, or community member than Amanda Phillips. She regularly gives her everything to help others, and now on her behalf, we are asking you to help her. We understand that not everyone has the capacity to make a financial contribution at this time and gratefully accept whatever you are able to do to help, including spreading the word about this fundraiser.

As Amanda says:

“Where there is life, there is hope”

Below, you can read more about what is happening with Amanda’s health or scroll down to see regular updates.

THE BACKSTORY

What many don’t know is that when Amanda was initially diagnosed with cancer in 2013 it was already at Stage 4, meaning that her primary cancer (Breast) had already spread (metastasised) to her Bone. Her kind is known as De novo metastatic breast cancer. There is no medical cure for Stage 4 cancer, and the action taken is around effective management to prolong life.

Given the aggressiveness of her type of hormone cancer, the initial outlook was poor. Her medical team offered her access to a revolutionary therapy that combined chemotherapy with monoclonal antibodies which had passed the trial phase but was not yet publicly available. With less than a week from diagnosis to the start of treatment, Amanda made a courageous leap of faith into treatment – one that would rob her of the chance to ever give birth to her own family but would give her a chance to live for a little longer.

In 2013 the antibodies (Herceptin and Perjeta) were only available via a compassionate access scheme with a nominal (but substantial) fee. This fee was provided by the ‘Victorian Actors’ Benevolent Trust’ along with the state and territory branches of the ‘MEAA’, who generously made the financial contribution to the drug company on Amanda’s behalf.

To put Amanda's prognosis in perspective, when this journey began 10 years ago, the medical team would not discuss a treatment plan beyond months (rather than years). We now know this was the beginning of Amanda’s remarkable story as a research participant, in which she has defied the odds time and time again and is still with us a decade later after 140 cycles of Herceptin and Perjeta. The team treating her at the Royal Adelaide Hospital are unlikely to ever see a response as complete as Amanda’s was. It was literally off the charts. Herceptin and Perjeta have been a lifeline, until now. However, this treatment no longer works.

For information about metastatic cancer read here.

WHAT’S HAPPENED NOW

In a crushing blow, last month it was discovered that things have inevitably changed for the worse.

Recent scans (CT, PET, MRI) show that Amanda’s sternum is completely infiltrated by cancer. In addition, she has a growing soft-tissue tumour erupting from the sternum into the chest. Her sternum has fractured under the pressure. Beyond the risks posed by this new cancer activity, there is concern about the growing mass in her chest putting other vital functions under pressure.

The previously miraculous drug therapy is no longer working, and the team have decided to offer Amanda a new-generation treatment.

WHAT’S AHEAD

Amanda’s medical team at RAH have managed to get her access to Enhertu – a “next-generation” targeted chemotherapeutic agent which seeks out cancer cells and “blows” them up from the inside. This drug is not currently available on the Pharmaceutical Benefits Scheme (PBS) in Australia meaning the cost per treatment every three weeks is $10,000. Each dose is mixed at the lab in Melbourne and then flown to Adelaide to be administered to Amanda within the day.

Due to Amanda’s unique medical presentation, she has been granted access to the treatment on no-fee compassionate grounds. The company hopes that Amanda’s (anticipated) results will help support the case for the drug to be accepted onto the PBS in the future, meaning that others will not have to pay to access the treatment in Australia in the future.

Effective immediately, Amanda’s treatment is:

On the cards, if tumour begins to shrink:

WHAT SHE NEEDS FROM YOU

Amanda needs to be free of the devastating uncertainty about how she will survive day to day to meet this latest challenge.

The treatment is brutal to her body to the extent that in the days following her first session last week, she has been too weak and ill to get out of bed, even to speak on the phone for more than a few minutes. Hopefully, this subsides, but it’s likely to be an indicator of the impact of the toxic load with each round.

On top of this devastating development, the reality is that she has no job security, no capacity to earn an income during this intensive treatment protocol, and as a creative in Australia, understandably has no reserves or assets to draw on while she navigates this next 6 months and beyond.

We are seeking your help to provide for Amanda’s basic cost of living needs, to cover out-of-pocket medical expenses, and to help pay for integrated therapies, vitamin infusions, supplements etc over the coming months.

** CyberKnife is a targeted radiotherapy currently only offered at two private clinics in Australia. Both are interstate. If-and-when CyberKnife becomes a realistic option for Amanda (the tumour will need to be smaller) then we will be asking for help covering those costs as well.

AMANDA WOULD LIKE TO THANK

Amanda has profound gratitude for your generosity, assistance, kindness, and words of encouragement as she faces this challenge. She also wishes to thank and acknowledge her medical team at the Royal Adelaide Hospital. They have jumped through hoops to get her on this next line of treatment, starting immediately, with the hope that this therapy will shrink or stabilise the cancer.

A FINAL NOTE

Amanda started treatment at the beginning of August. I know she is keen to deliver you an update personally as soon as she is able.

In the meantime, please note:

• Food/shopping - Kind offers to cook or shop cannot be accepted at this time. Amanda is on a restricted diet when she is able to eat anything.

• Transport & Visitors at Treatment – Transport is currently taken care of, and due to ongoing covid measures in Oncology units, visitors/guests are not allowed at the treatment centre.

• Amanda and Alex are consulting with Australia’s leading experts on how to effectively manage a complex ongoing medical situation and we will all keep you updated here on this page.

Thank you everyone and let’s rally to support Amanda.