Open-sourcing my cancer has done something I didn't expect. It's brought some brilliant people into my corner: oncologists, genomics researchers, vaccine developers. Each of them has given me something I wouldn't have found on my own.
The problem is that they've all arrived separately, and none of them can talk to each other. Every conversation runs through me. I'm the bottleneck, and I'm not qualified to be one.
So I'm getting them in one room.
What's happening
Cancer Patient Lab run hackathons on individual patients. Not a conference, not a webinar — an hour spent on one person's case, with whoever turns up pulling it apart. They started doing it in 2020 for someone who had run out of options, and he came out of it with a next treatment and the knowledge that he'd turned over every stone.
Mine is on Wednesday 25 November, 5–6pm UK, online. It's timed to land just after my latest results. The bloods are already in and published — 28 October, CEA 46.5, ALP down to 149. The restaging CT is done and I get the report next week.
Two ways to get involved
1. The hackathon. A one-hour online session on 25 November. Just RSVP at the link and come along.
2. The care circle. A private, longer-term space where people can see my records and my questions, and talk to each other rather than through me. If that sounds more useful to you than an hour on a Wednesday, message me for an invite.
Do one, or both.
Who I'd especially like to hear from
- Colorectal oncologists, especially anyone who knows the UK and European trial landscape
- Interventional radiologists and ablation specialists
- Genomics people and bioinformaticians
- Personalised vaccine and immunotherapy researchers
- Supportive care specialists who can help make chemo less shit to live with
What you'd be working from
Everything is already published. My One View is the whole case on one sheet: diagnosis, genetics, every treatment and how it went, latest bloods, what I take. There's a clinician brief if you want the half-page version, and the full record underneath it with every blood test, scan report and the raw sequencing files.
Worth knowing before you come: my sequencing so far is a 517-gene tumour-only panel. No whole genome, no RNA-seq. That gap is one of the things I want to talk about.
What the scan changes
Next week I should have a bit more clarity on what's next. Cycle 5 of this FOLFIRI + cetuximab rechallenge is done, the plan was always eight to twelve weeks and then a decision, and the scan is the thing that decides it.
But I don't think "clarity" is quite the right word for what's coming. Whichever way the report goes, it opens up a lot of questions rather than closing them. If it's responding: do I carry on, or move to maintenance 5-FU and cetuximab? Do I drop the irinotecan, given the UGT1A1 *28/*28? What about the liver lesion — is that one for surgery or ablation rather than more chemo? If it isn't responding, the question is simply what the next line is, and whether there's a trial worth chasing.
I'll publish the results and update One View as soon as I have them, as always. And those questions are, I think, going to be the crux of the hackathon conversation. That's really what I want the hour for: not a verdict on the scan, but the argument about what follows it.
The rules, such as they are
It's informal and voluntary, with no obligation on anyone. Nothing said in the room is a treatment decision — everything goes back to my oncologist as questions, and I'm hoping she'll join. I'll share whatever comes out of it, publicly, so it might be useful to someone else with a similar profile.
And the usual ask: no juices, no books, no anecdotes about someone's uncle. Specialists and people who know this disease, please.
If you've been following this and wondering whether any of it actually goes anywhere — this is where it goes.
— Russ