Empowering the Newly Diagnosed Patient with today’s lifesaving knowledge Today.
The Globally Connected Patient functions in the space created at the intersection of Medical Science, Healthcare Providers & Patient Knowledge. We create simplified communication initiatives, products & services, that empower the newly diagnosed cancer patient & their supporter community.
My wife Claire and I foundedCCA Australasia as a result of my cancer challenge & experiences. It evolved out of Claire’s research in her attempt to save my life. As I was able I began formalising the accumulating knowledge and information and form the bones of what is CCA today.
CCA is globally linked and continues to expand its connections to help newly diagnosed patients and caregivers connect with people, information, & resources in the most efficient and timely manner. This is their best chance of survival against a cancer diagnosis of less than 8 % survival rate -1% if metastatic as I was. The average survival period is just 6.7 months.
Currently, the best success equation to best outcomes is to efficiently share the collective and distilled knowledge, information & wisdom from other successful Patients and Caregivers – this is what we do, this is a very fast-changing space as we continue to improve our ability in centralizing and delivering lifesaving information to the coal face – “the Oncologist and their Newly Diagnosed Patient & Caregiver.”
Next-Generation Genomic & Molecular Profiling, Immunology, Immunotherapy, Cellular biology, Mutations, Pathways, and application of patient data.
Support & Mentoring seriously & terminally ill cancer patients, and their support community.
Developing and connecting Global Patient & Support Communities
Recentralizing disenfranchised/fractured broken communities and transitioning them into Smart Local Villager Environments.
Grassroots innovation and actions
Writer & Communicator
I have a solid grasp of front facing technology design and delivery
I have a strong passion for Road Cycling & Running, and a refreshing dip in the ocean swim to finish it off.
Historically being a Kiwi I love my rugby and in my earlier years was good enough to consider becoming a professional Golfer, although these days I am strictly a pro from the couch have great difficulty finding the time to pick up a club.
Personal insights and experience
Thoughts are Things
I included this section to highlight how things have played out with my experiences gained and their assimilation into how I function. There are certain thoughts that stick, forged into real things that have reshaped who I am. I would underline that they have added significant value to my effort hence their inclusion here. These are those things
To walk on water you must first believe it is possible, despite everyone else knowing that it is not!
Anything and everything is possible if you continue to remain open to its reality. It triggers your inner willingness to rise up like a bright beacon in the dark so that ‘opportunity’ and ‘luck’ can always find their way to you –
A Caveat! I only discovered this personal trait when thrust into the fire and brimstones of hell – it became an invisible strength that got me up and out from within the jaws of death. In reflection I have always had this unusual ability I just never consciously realised it until it became my only remaining resource.
Take that next step, and the one beyond that until momentum reaches out and embraces, lifting you up and beyond the now. Transporting you to that place where dreams can breathe and grow. A place where their visions and aspirations rise up to play and embrace their realities free from the crowded centre left behind. Free to make plans for their journey to an outward reality.
This was a doorway to a special place within, and once I stepped through I could see another doorway to a new and better reality – so I walked through it.
Fiction always proceeds its Reality – just make sure it is your fiction first.
This became a critical distinction in realizing my own potentials and outcomes. Creating and embracing my own fiction immersed me in the pursuit of its reality. The unintended result of this pursuit was that it left no space for the overwhelming and uninvited realities of others, it gave me clarity of purpose. This space within is so very, very precious, it has its own unique ecosystem and potential, be very selective about who you allow in – this will offend and it is confronting, but more than worth the effort.
I have lived this reality
Fiction always proceeds its reality, that’s how we made it to the moon. There would be no reality if not first it was someone else’s fiction?
The Definition of Fiction; Something imagined – a story not yet real – “NOT YET!”
Do not allow others to talk you down with “Hope is not a plan.” Sometimes it’s the only plan in town – it’s primal stuff so grab it, let it breathe, let it rise up. ‘Hope” is very often the first plan, which in turn feeds the fiction and then the reality. You just have to let it begin, I learned to get over myself and out of my own way. Hope provides that initial flicker of momentum and with momentum, we can all do magic.
In 2017 I became a super cancer responder by overcoming a Stage 4 terminal diagnosis with a 1% survival outlook and just weeks if not days to live. With this success, I set about merging my previous experiences and skills with my new cancer knowledge, skills, and experiences. It can also be said it is a case of “keeping my friends close and my enemies even closer.”
Having succeeded over 25 hrs of significant surgeries and 2 international clinical trials, I have gained very unique insights into immunology and Nex-Gen Genomic Sequencing. I have been able to adapt my previous skills to develop “Cancer Patient Technologies” which utilize and aggregate existing knowledge and downstream Next-Gen genomic data. The focus is to improve and achieve the best outcomes for the “Newly Diagnosed Patient”
Cancer -Liver/Pancreatic (within the bile ducts)
Prolific Mets to Liver and lungs
Survival % if metastatic stage 4 = 1%
Overall average life expectancy 6.7 months
Total Surgeries (25 hours) – removed
Bile Duct (99%),
Gall Bladder (100%),
Lymph Nodes (2).
The Main Hepatic artery (100%)
via an emergency aneurysm op.
You can never become “UnCancered,” The trick is to not walk in the shadow of the beast, get alongside it, learn its ways, find your opportunity, then go do something special if not remarkable with it.
When you walk alongside, you see what you could not see before – you see what others cannot from their crowded center you previously shared. This can become your advantage if you let it.
Experiences & Thoughts that stuck
When you get stripped down bare and pushed off that thin ledge of life, you very quickly crystalize thoughts that matter most – there is no confusion on that.
In November 2016, I was given a terminal cancer diagnosis (Liver /Pancreatic) with 6 months or less to live. 25 hours of significant life-threatening surgeries followed, but as predicted it came back hard and fast, spreading throughout my liver and lungs.
My life was entering its final stage, but I was unexpectedly thrown a “Hail Mary Pass” by Dr. Matthew Burge and Merck in California.
With only weeks if not days to live, I signed the most important document that anyone could ever sign – with the help of my oncologist who held the pen upright in my hand and my wife Claire holding my body in a seated position, I moved my hand with all my effort. I made the cut and onto the trial before the cut-off time. I had joined the trial knowing that no other CCA patient had ever succeeded.
This was the pass I had to catch, or it was all over red rover for me
Amazingly I did – I responded almost immediately. Stunningly, it took just 3 days to respond and in doing so become part of a modern-day miracle cancer cure equation. The pathway and circumstances that lead up to this “Hail Mary pass is a story in itself – without which I would have died even sooner.
A quick look at catching that pass-
One of 9 patients globally
It took just 3 days to respond
Super Responder- Full response confirmed at 9 weeks
Full Ongoing Response placed Steve’s result into the 1% of the 1% of all stage 4 Metastatic terminal cancer survivor results
Also, 2nd-ever CCA patient globally (and the only patient outside the USA) to fully respond and recover from a CCA stage 4 metastatic setting.
As of early 2021, officially only 3 patients have ever achieved this. (2 USA, 1 AUS)
“Steve, cancer has taken so much from you, but it can also give back so much more if you let it” – Erin
Erin was my very first trial nurse, she tried so hard to smile for me, it’s gotta be so tough when you see someone in your care slipping rapidly away from the living. I could not lift my head to acknowledge her words, but I do remember thinking geez Erin are you nuts – what drugs are you on? Well, I can say those few words really got to me, I didn’t know where to file them – they kept at me until the penny finally dropped. – “If you let it” – If I allow my mind to see beyond the now, perhaps my body will follow? – Erin’s simple words have become who I am, and how I function. With vision, I can do magic – without vision, there is nothing but an abyss.
When you face drawing your last breath, you see what you are losing, you see what you did not see before, you see what others cannot.
What saved me seems so obscure and lacking reality, yet it was real to me –
“Anything and Everything is possible, as long as I remained open and willing to its reality. This allowed my willingness to rise up from within, like a bright beacon so that Opportunity and Luck could find their way to me.” I think we are all born with this beacon within, I think for many of us, it takes a significant event to switch it back on.
You have to remember when you are in a tight spot, others mostly cannot see what you see – it’s your reality and you have to work it. You cannot get distracted by those who cannot share what you see.
Yes, cancer changes your life for the better, if you let it – thanks, Erin!
Now equipped with a very intimate knowledge of cancer, mutations, clinical trials, and highly targeted immunotherapy interventions, I began developing what I had learned into something that I could practically contribute to saving some else’s life. I could create contribution and relevance from all this chaos I had lived through.
As the story of my survival seeped out, patients and their caregivers reached out to me from all points of the globe – they followed the keytruda and mutational pathway to my door (Facebook messenger) seeking to connect with someone the same as them. They wanted to know what I know, perhaps a magic pill of information that could save their life. We were connected by a specific cancer type, and then further filter into a match by a specific mutational signature. Yes, a type of mutational tinder. The future success of cancer treatment is targeting the exact mutation that is driving the cancer growth – no matter where it is in the body.
This unique and intimate knowledge lead me to develop what I maintain is a world-first – a Peer to Peer Mutational Match Making platform, where patients from anywhere on the globe can be matched and connected by their exact genomic mutation signatures.
For the benefit of these too healthy to understand
When you are a patient and all options seem at an end, the value of connecting with someone exactly like you (Mutationally) is the most powerful elixir of hope on the planet. This application will save lives because the medical profession cannot achieve this at the grassroots level – patients can.
Dr. James Allison’s (2018 Nobel Prize winner) *Checkpoint pathway inhibitor breakthrough, turned fiction into fact, opening up the relevance of genomic profiling of a patient’s biopsy, by using NGS – Next-Gen Sequencing.
NGS provides researchers and pharma companies a window on developing new highly targets drug interventions such as immunotherapies that use the body’s own immune system to eliminate the cancer, it also provides the treating physician with a precise treatment road map that targets and eliminates the exact mutation driving a cancers growth.
This is, without a doubt, the biggest breakthrough since penicillin, and what’s more, this is only just beginning.
*Checkpoint Pathway Inhibitors (drugs) block the messaging pathway that tumors use to trick the immune’s T Cell army to not attack. By blocking this pathway the brakes are removed from the T Cells, and they then attack and destroy the tumor.