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 →
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.