Empowering the Newly Diagnosed
The Globally Connected Patient functions in the space created at the intersection of Bioinformatics, Healthcare Providers & Patient Knowledge. What we do, is create simplified communication initiatives, products & services, to empower the newly diagnosed 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.”
The relentless pursuit of my potential is the minimum responsibility I have within the opportunity of life.
I have a propensity to get back up and take that next step no matter what, I never seem to doubt my willingness to do so. I think for me, getting back up is more important than where it is I am going to go after that. I can’t always see and plan for what lays ahead, but I can clearly see and plan for who I am, and want to be. I think this is where my undeterred willingness comes from when facing uninvited chaos and overwhelm.
Getting up creates momentum, and any momentum that I can generate no matter how small or insignificant is a powerful resource to me. It has been my experience that momentum always begins as a thought deep within me – I just allow it to rise up until it finds its outward expression. I also think just the awareness of this has defined many of my outcomes. I believe we are all hardwired this way – it is who we are before we are.
I have a strong passion for and continue to be active in Road Cycling & Running, and refreshing ocean swims 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.
An avid nonfictional reader, in particular, biographies as I have the time, which is not so much in recent few years.
I enjoy embracing the challenge of remaining relevant and technology is certainly the front line of this subject.
An everyday ritual – 2 coffees in the morning and 2 wines to farewell the sunset – everything between those two events is flexible.
Love new experiences in particular weekend country vineyard getaways.
Raw Porridge Raisins & Milk
Potatoes, Peas, Eggs, Avacado’s, Blue cheese & anchovies –
White or Red Pinots Now that’s a great way of profiling someone don’t you think?
To walk on water you first have to believe you can
Such a simple concept, but just try doing that when everyone around you knows this is not possible and you are either incredibly stupid or certifiable! This is where you get to understand who is in charge of you and your reality – an incredibly narrow ledge to occupy.
I have always naively believed that anything and everything is possible as long as I remained open to its reality. rightly or wrongly this belief has always allowed my willingness to rise up from deep within, like a bright beacon of energy that helps ‘opportunity’ and ‘luck’ find their way to me. Sometimes this belief has been my only plan.
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.