Cancer Patient Technologies | Villager Communities | Business Entrepreneur & Investor
Thanks for dropping in, I am the founder of the Globally Connected Patient which develops and implements Cancer Information Technologies, that improve patient outcomes. My wife Claire and I also founded CCA Australasia – (Cholangiocarcinoma)
Prior to my cancer challenge, I founded Destination Villages, an online to offline tech and touch model for transforming fractured & broken down communities into vibrant villager environments.
Claire and her team continue to develop and manage the fast-evolving Destination Villages environment, which enables me to explore and implement more ways of improving cancer patient outcomes.
Founder – The Globally Connected Patient and Caregiver.
2018 – Present
Develops and implements Cancer Patient Information technologies. Current projects
The Cancer Toolkit: A series of toolkits for the “Newly Diagnosed” patient and their support community.
The series places the patient’s toolkit at the center of a community of toolkits designed to synchronize the effort of the many.
Next-Gen Sequencing: Utilizing downstream patient data
Online Platform and Email service centralizing and simplifying Immunology and Immunotherapy for the newly diagnosed patient and caregiver.
Rugby & golf are a big feature. Mostly I pursue road cycling, running, and especially those highly intelligent post-ride coffee sessions that follow – a great place to massage out the facts to meet my expectations.
Next-Gen Genomic Profiling, Immunology, Immunotherapy, Cellular biology, Mutations, Pathways, and patient data use.
The Globally Connected Patient & Caregiver Collective environments.
Expertise and experience in the environments of serious and terminal cancer patients and their support community.
Experienced in identifying and transitioning fractured broken communities into Smart Local Villager Environments – (geographic & Demographic)
Pretty handy Writer & Communicator
The Cancer Challenge
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.
The Career of Cancer
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.