What open sourcing has done for me
When your data sits in a drawer, nobody outside your care team can help. Since I put mine online, people I'd never have found have found me.
A genetic specialist, about mapping my whole genome
My genetic testing so far has been panel tests, which look at a set list of genes. I've been talking to a specialist in Australia about fully mapping my genome, to see what those panels can't.
Serova, about a potential blood cancer vaccine
The team at Serova, who work on cancer vaccines and have had cancer themselves, have been talking to me about a possible vaccine approach for my blood cancer (I also have smouldering myeloma).
Another vaccine specialist, with things to look at
A vaccine specialist in Argentina has been sending suggestions my way: approaches, research and questions worth taking to my team.
Radical Health
Sharing led me to Radical Health, an AI platform that's become one of the best places to keep my records and one of my best sounding boards. More on how I use it →
A genomics researcher, who read the small print
A bioinformatics and genomics researcher went through this site, spotted that the panel testing I've had is not the same thing as whole genome sequencing, and pointed me at the NHS route to it and the published evidence behind it. That one message reshaped what I'm chasing next.
Podcasts, panels and a lecture slot
Publishing this has put me in front of audiences I'd never have reached: a healthcare AI podcast, a panel in Copenhagen, an ethics podcast in the US, and an invitation to record a guest lecture for a healthcare AI course. Mostly from people who work in health technology and wanted a patient actually in the room.
People deploying AI in real hospitals
Introductions to the people responsible for putting AI models into actual clinical use at a major cancer centre, and to founders building patient-facing tools. The useful part is that these conversations run both ways.
Offers to do something with the data
A bioengineer offering to restructure my records into something built for trial matching. A stage 4 survivor building a tool that works out what to take and when. A researcher offering to search for trials I might be eligible for. Not all of it will come to anything, but none of it was on the table before.
A clinician offering to work on it for nothing
An oncologist who read this has gone off and spoken to a genomics lab about sequencing my tumour against healthy tissue, with a view to designing a personalised vaccine, and has offered to put in the work voluntarily. He was also straight with me that sequencing for that purpose is a different job from clinical sequencing, and about what it would cost. That's three separate vaccine conversations now running in parallel.
None of this is a cure or a promise. They're conversations, leads and options I didn't have before. The people involved are described by what they do and where they are, not by name.
Is there anything else I should be doing?
My profile is here: stage 4 MSS, RAS and BRAF wild-type colorectal cancer, in the lungs, chest lymph nodes and liver, currently on FOLFIRI + cetuximab. I also have smouldering myeloma.
I'd love to hear from people who understand that profile: patients with similar conditions, oncologists, scientists, geneticists and trial teams.
Yes please
- Trials I might be eligible for, especially in the UK and Europe
- Treatments, combinations or tests worth raising with my team
- People or centres I should be talking to
- Your own experience, if your cancer looks like mine
Please don't
- Generic advice about killing cancer
- Diets, juices or supplements that "cured" someone
- Product pitches
I know it comes from a good place. I've just had my fair share.