Helping Nicolas Ribbe

Dear all, 

Let me start by simply saying: I cannot thank you enough, I was completely taken aback by the kindness all of you have shown. Your support has given me the opportunity to get the help and medicine I need, without you, my initial worst-case 3-month prognosis may have become a reality. 

Since my last post to you all, 7 months ago, it has been a whirlwind of highs and lows, the rollercoaster that comes with a rare form of cancer. Let’s start with the highs…

Vic and I were lucky enough to get married on the 24th of January at a beautiful venue called Redleaf in Wollombi, close to the Hunter Valley wine country. It was Vic’s dream Italian wedding in a very small town in Australia. It was a small event with close family and friends, and we couldn’t have dreamed of a better day. It was filled with love, laughter, nervous vows giving, dad dancing, yummy pizza and pasta, and just a whole lot of fun. 

Vic and I deferred our honeymoon, as shortly after the wedding I commenced with a combination of three drugs: chemotherapy, immunotherapy and interferon, known as ‘Triple Therapy’. This combination of drugs was recommended by the Centre of Excellence for Fibrolamellar Carcinoma (Fibro) at Rush University in Chicago. As you may remember, there is no set treatment protocol for Fibrolamellar, but Rush University has treated the largest population of patients and therefore has the most experience – in addition to our great care team here in Australia, we rely on their expert opinion.

The triple combination aims at targeting and stabilising the remaining visible cancer and preventing further growth. The treatment did exactly that: my CT scans showed the growth of the cancer nodules in my lungs started to slow down and stabilise. The main side effects were tiredness and sensitivity to the sun, which when you live in Australia can be hard to avoid! Vic and my family would cover me up in thick sun block, hats and rashies to make sure I made the most out of the summer (honestly, I think it gave them a good laugh too!). 

After 2 months of treatment my body decided otherwise, and I experienced severe toxicity to the drugs. I was rushed into hospital and treatment stopped immediately. The drugs were also unfortunately impacting my thyroid. I was devastated and wasn’t sure if there was a Plan B for this cancer. My local oncologist and Rush University established a collaborative relationship to come up with a Plan B. 

In the meantime, I went back in to see my whiz-bang surgeon who arranged for me to have the first-ever lung cryoablation done in one of the biggest hospitals in Sydney. This is where they freeze the cancer nodules and your body slowly breaks down the dead cells and removes the bits left over (clever hey?!). I had two procedures, which both led to a collapsed lung and some severe pain, but we believe we got them all and will continue to monitor via my CT scans. Don’t worry – my lungs are no longer collapsed and functioning normally again. 

Plan B was now ready to implement: we decided to continue the immunotherapy and just recently on 1st July, we introduced another drug, Lenvatinib. This combination is called ‘Magic Mike’, and if it can do half of what Channing Tatum has done for male dancing, then we should be in good hands. We hope my body can tolerate this new combination and it is able to prevent the cancer from further growing and recurring. 

All in all, I believe we are in a good position, and I am hoping we can continue this trajectory. Your donations and messages have been fundamental in getting me here, and I can’t even express how much it means to me. Thank you again. 

I’ve been lucky and fortunate in my journey with Fibro, but I know there are many that aren’t. Throughout my journey, Rare Cancers Australia, and Fibro Fighters, particularly Tom Stockwell, have connected me to experts in the space and guided me every step of the way. Taking a note out of their book and yours, I have been giving back to the community. First in baby steps, which I hope at some point will lead to giant strides. 

To date, I have reached out to Fibro patients in Australia so they can connect with the various organisations I listed above but also to my surgeon, Dr. Oli Fisher, who is knowledgeable on Fibro and is very closed connected with the experts at Rush. I will continue to do so and implore that if you meet someone that may have this cancer or any other rare cancer, please point them in my direction and I will do everything I can so they can receive the best care possible. 

As most of you know, I previously worked in consulting and have recently put this hat back on to see if there any improvement opportunities in the identification, diagnosis, and treatment space of rare cancers, particularly Fibro. My concept and ideas are only in the infancy stage, but I am engaging with charitable organisations to understand whether together we can make a difference to persons less fortunate and save lives. 

Thank you for coming on this journey with me. 

I have had the privilege of growing up within a small, tight-knit and loving family and have been lucky enough to see many wonders of the world. I’ve been on adventures; climbed mountains; ran marathons; bopped along at music festivals; and met the love of my life.

Throughout the first few years in the corporate world, I worked as hard as I could so my fiancée and I could start the next chapter of our lives together. We were planning on moving interstate from Sydney to Perth; we had secured work there, put a deposit on a house; packed up our two crazy fur babies; all ready for us to start trying for a family. All our hard work had seemingly paid off – that dream was firmly in our grasp, and we could hardly contain our excitement. A few weeks later, on the 21st of October 2021, everything changed.

Our lives were turned upside-down and inside-out, after an initial strong reaction to my COVID vaccination I ended up in the emergency room, where there was a devastating discovery of a large cancerous tumor on my liver. We soon found ourselves sitting with my newly appointed oncologist, who explained that I was diagnosed with advanced fibrolamellar hepatoma – an ultra-rare cancer approximately only 1 in 5 million people have it, with no real treatment protocol, and a very poor prognosis. My tummy sunk when he said I could expect a possible lifespan of between 3 months to 3 years. In that dark moment, I remember thinking that it was exactly 3 months until my 31st birthday, and whether I would live to see it and that it might be the last Christmas with my family.

Completely stunned, Vic (my fiancée) and I sank into darkness listening to all the medical talk, unclear treatment pathways, limited data and the harsh reality of not being able to start a family naturally. The doctors ran several tests and scheduled follow-up appointments, whilst our family provided positive encouragement from Europe, but we really needed them closer to us for emotional and physical support. With the world still firmly in the grip of the global pandemic, we started working to make sure our nearest and dearest, would be able to join us. We wanted to enjoy the little time we had left.

I was due to start systemic treatment at the beginning of November since surgery was not an option. We were recommended to conduct one more PET scan to review the spread of the cancer. I received a heart-stopping phone call the very next morning from my oncologist. Low and behold, some small medical miracle had occurred. My scans, which only 4 weeks prior, had shown what appeared to be metastatic disease, had significantly cleared. All of a sudden, the possibility of surgery was back on the table, which held the promise of a much better prognosis. It is safe to say my doctors were astounded by the scans. For me, it seemed too good to be true.

I had my surgery within a week. My whiz-bang surgeon removed half my liver, visible cancer around it and some enlarged lymph nodes. I am still recovering and in a lot of pain from the surgery and I will require cancer treatment to kill any remaining cells. I think about the fact that despite this good turn of events, fibrolamellar is aggressive and more than likely to recur, with an 80%-100% reoccurrence rate. The data around fibrolamellar is incredibly limited around the world, so I paid to have my tumor flown to America to have various cancer treatments tested on it, to help shape the best next steps for my treatment pathway. 

I know our dream of starting a family in Perth is unlikely and I know my life won’t be the same now, I will require regular scans, cancer treatment and likely more surgery. All of which have harsh side effects on Vic and I’s everyday life, mental wellbeing and financial income. No one knows how much time I have left but I am determined to fight my fibrolamellar, together with Vic, my family and friends, my fantastic medical team and amazing advocates. I want to make every day count, I will pursue medical testing, various treatment options, clinical research and holistic care pathways – whatever it takes.

So here is my plea to you: please give what you can so I can access medicines in Australia, which aren’t readily available and need to be funded by myself as the patient, for my first round of treatment. You may not only be sparing my life but other Australians who will be able to rely on the findings from my treatment regime to help them on their journey.

I will try every method to fight this little-known cancer and maybe even have a positive impact on any Australians who may find themselves on the same dark path. I want to keep loving life, and just maybe, I can help shine a light for all of us with fibrolamellar.