Help Maddy through sarcoma treatment!

Maddy lives on the Yorke Peninsula in South Australia with her husband Harley and their beautiful 3 year old daughter Evelyn. Maddy is about to start intensive oral cancer treatment for an extremely rare form of locally aggressive and invasive sarcoma (non metastatic soft tissue cancer) which she was diagnosed with in the middle of last year.

This sarcoma only affects 2 in 1,000,000 people a year and is extremely hard to treat due to it being inoperable, and typically resistant to treatment. Maddy’s tumour currently measures almost 8cm in her left underarm/shoulder region and is wrapped around the lymph nodes, pressing against nerves. It is very close to infiltrating her chest wall.

During the last 15 months Maddy has been battling debilitating nerve pain, significant loss of use in her left arm, tremors and numbness in her hand, and extreme fatigue. Maddy is unable to dress herself without assistance, cannot drive or wash her hair, cannot hang out washing and struggles with everyday household chores and cooking.

This amazing young family has been navigating these challenges and the costs that have arisen over the last 15 months with their heads held high. Now they need some help.

The anticipated side effects of this treatment are going to take a toll on Maddy physically and mentally. Her oncologist has advised that she take a few months off work to focus on treatment. Unfortunately she doesn’t have any paid leave to use, and with the current cost of living coupled with the dramatic increase in medical expenses, they just can’t survive on one income. Assistance with the cost of food and bills is greatly needed.

I am asking for the generosity of friends and community to provide a helping hand during this difficult time to alleviate any further stress and allow Maddy to focus on healing. Any donation, big or small, will be gratefully appreciated. If you are unable to donate, all I ask is that you consider sharing this page. Let’s help Maddy beat this!

Below is Maddy's story for anyone interested in learning more:

In June of 2023, what I thought was just a swollen lymph node from the revolving door of daycare bugs my daughter brought home turned out to be a 5cm tumour growing in my left underarm. I was sent for urgent biopsies, mammograms and ultrasounds the Friday of that week and the radiologist and nurse performing my biopsy told me to go home, spend some quality time with my family because come Monday it’s likely my life will be turned upside down. It wasn’t until Wednesday I had received the phone call that the results were inconclusive because no body had seen anything like it before but based off the scans of the tumour we were dealing with cancer and therefore I needed surgery to remove the tumour and have it sent off for specialist testing to determine what kind.

In July 2023 I was referred to the breast cancer clinic and they booked me in for a lumpectomy early August. A couple of days before the surgery I was phoned by the breast surgeon that they have cancelled my surgery as a specialist has reviewed my initial biopsies and determined that I have a rare form of sarcoma and that it would grow back more aggressive if they were to operate on it and she was handing my case over to another breast surgeon who has experience in sarcomas.

August 2023 I met with the new specialist and came armed with lots of information and research that I had collected after diagnosis. Through support groups and online resources, I knew I needed to have an MRI for accurate tumour mapping and be referred to a sarcoma oncologist for management of disease. The new specialist reassured me I was wrong and an MRI was an unnecessary waste of time and that there was nothing that can be done for me so a sarcoma oncologist wouldn’t be required. Due to the low risk of the tumour metastasising he advised that he would see me in 3 months and re-scan to see if the tumour had grown. At this point I had started experiencing debilitating pain and had lost function of my left arm.

In November 2023 we met with the same specialist who was adamant that an MRI and oncology referral wasn’t necessary but we stood our ground and he reluctantly gave me the referral. Within a week the sarcoma oncologist asked to meet with me immediately. He was concerned that I hadn’t had been referred to him 4 months ago and that there was no MRI done as ultrasounds aren’t a reliable way to track the growth of a tumour my size.

He believed that due to the size of my tumour and the symptoms I was experiencing, I needed treatment ASAP to relieve the pain and pressure and to stop it from growing out of control. He was running a very promising trial for dense soft tissue tumours at the cancer centre. This was the first ever medication created specifically for my subtype of sarcoma. To be eligible for the trial I required 20% growth in my tumour from diagnosis to entry into trial.

An MRI was done beginning of December to which came back that my tumour was currently 7.5cm which meant I met the required 20% growth and I was accepted as a participant in the trial. Before Christmas I completed all the pre-trial testing and paperwork and was ready to receive the medication after Christmas. After Christmas we received the phone call to say I had been removed as a participant in the trial as they required an MRI to MRI comparison for the 20% growth requirement. Due to not receiving the MRI in the beginning like we pushed for, I could no longer participate.

Due to the success of the trial medication thus far, the oncologist advised that it was in my best interest to withhold treatment of any kind for 6 months, get an MRI done in May 2024 as the trial organiser would accept me in their last round of take ins before the trial is wrapped up in June. It was expected I would achieve 20% growth in this time due to the current speed of growth in my tumour.

The 6 month wait was gruelling as my symptoms continued to get significantly. May 2024 I receive my 2nd MRI on my shoulder and it was short of the 20% growth from December 2023 to May 2024 and it was essentially game over with the trial and we had wasted 6 months for nothing.

The next option suggested by the oncologist was to take a combination of a steroid medication as well as a hormone medication as there were currently a small amount of patients in the USA using this combination to stop growth in hormone reactive tumours. We had major concerns about this treatment as the success rates were low, the hormone treatment would put me in menopause at 28, and due to my history of endometriosis and adenomyosis I would be at a high risk of developing endometrial cancer. Not to mention, the testing done on my biopsies show that my tumour is NOT hormone reactive. When we asked the oncologist if there was anything else I could try to shrink the tumour, I was told I was out of options. At this point, feeling hopeless, I decided it was in my best interest to take the steroids and refuse hormone therapy while we sought out a second opinion from a private sarcoma oncologist.

We met with the new oncologist at the end of June 2024. He had a long list of different therapies and medications to explore to find the best fit possible for myself. We finally for the first time in 12 month had a sense of a hope in beating this disease. The first avenue we decided to pursue was radio frequency ablation where probes are inserted into the tumour and essentially try the tumour. After 1.5 months of back and forth between the oncologist and radiation specialists, they came to the conclusion that due to do the size and involvement of the tumour I wasn’t a suitable candidate for this form of treatment as I would risk permanent damage to the essential nerves in my shoulder. This conclusion also ruled out similar therapies such as cryotherapy and HIFU leaving us with systemic cancer treatments (chemotherapy) as our only option.

We have 3 options that have had recorded success with my sarcoma to try, all varying in levels of toxicity. Our most preferable option is to try 3-6 months of oral cancer treatment before trying IV chemotherapy. The particular oral treatment is currently not PBS approve for sarcomas and costs $6,000 a month.

This brings us to now, September 2024. I had an MRI to see if the steroid I had been taking since May 2024 had made a difference to my tumour. There was tiny growth noted and more tendrils branching out from the tumour. The oncologist then made an application to Bayer for compassionate affordable release of the $6,000pm drug. We were expecting to be waiting months for a response and even then there was no guarantee they would agree. To our surprise, within a week they had called to confirm that they are supplying us with the drug for free and we can pick it up now!

I begin my first dosage on the 17th of September. I will need to take it twice a day, everyday for 3 months and if my 3 monthly MRI shows significant (more than 10%) shrinkage of the tumour I will continue on to 6 months. Due to the toxicity of the medication I will have to have weekly appointments with my oncologist to track my body’s tolerance to the drug. The side effects include:

- nausea/vomiting

- Diarrhoea

- Lowered immune system

- Bleeding gums and mouth ulcers

- Blistering and peeling of hands and feet

- Hair loss and brittle nails

- Anaemia

- Blood pressure issues

- Hot flushes

Whilst I’m anxious and nervous about what I am about to endure, I am trying to remain optimistic for the future and gaining my quality of life back once and for all. After over a year of so many unknowns, medical negligence and gaslighting I’m happy to finally be in the right hands and moving forwards to get rid of my tumour once and for all!

Thank you for reading if you made it this far!