Changelog

Every update, in order

I rebuild my profile every two weeks, in time with my chemo cycle. This is the running record of what changed each time: my condition, what I worked out, what became available to download or request, and anything new that came out of putting it all in public. Newest first.

  2 updates so far · latest 1 October 2026

1 October 2026

Latest

Cycles 3 and 4 · 16 Sep – 1 Oct

My condition
  • CEA is 44.6, down from 50.9 on 14 September and 146.0 on 1 September. Third fall in a row — about 69% across three cycles of the restart.
  • Cycle 3 was physically easier than Cycle 2. Same drugs, same doses; what changed was soup-only through the nadir weekend and stepping the laxatives down once things moved. No GI emergency this time.
  • Haemoglobin (126) and red cells (4.09) have drifted just under range. ALP is still high at 169. Bilirubin 21, marginally over — I have Gilbert's syndrome.
  • Cycle 4 started on 30 September. Cycle 5 is 14 October, with a CT scan after it.
What I found out
  • I finally pinned down what sequencing I've actually had: a 517-gene panel, aligned to hg19. Not whole genome. Not whole exome. A lot of people assumed otherwise, including me.
  • The tumour panel is reported tumour-only, so my inherited variants are sitting inside it — that matters for anyone reanalysing it.
  • Daily tracking now runs to 29 September: 40 days, morning and evening, across three cycles.
  • The cycle map is now Cycle 4, with metformin established from day 4.
New to download or request
  • The full manifest of my raw sequencing package — 17 files, 36GB, every size and MD5 checksum. The files themselves are available on request.
  • Daily tracking as a CSV, 20 August to 29 September.
  • The 29 September bloods as a PDF, identifiers redacted.
  • The Cycle 4 map as a PDF.
  • The card as PDF, plain text and JSON.
What it flagged up
  • A genomics researcher read this site and pointed out that panel testing isn't whole genome sequencing — and that sequencing tumour and normal tissue together is what opens a personalised therapy route. Three people have now said the same thing independently.
  • There's an NHS route to it. The South West Genomic Medicine Service covers Bath. That's the next call I make.
  • An oncologist has offered to work on vaccine design voluntarily, and flagged that sequencing deep enough for that is a different, deeper job than clinical sequencing.
  • Five vials of blood went to a blood analysis company at the end of September.
  • One gap I can't close yet: the platelet figure on my copy of the 29 September report is unreadable, so it's blank rather than guessed.

17 September 2026

Cycles 1 to 3 · 19 Aug – 17 Sep

My condition
  • CEA 50.9 on 14 September, down from 146.0 on 1 September — the first big fall after restarting chemo in August.
  • ALP high at 179, globulin 37, platelets 289. Bilirubin normal.
  • Cycle 3 infusion on 16 September. Chemo restarted 19 August after progression during the summer break.
What I found out
  • Rebuilt the whole site around Open Source Me: one card carrying my entire profile, always the latest version at the same URL.
  • Split the full record into Current and Archive, so what matters now is at the top and the older material is still there, just further down.
  • Published my first cycle map — day by day across a 14-day cycle, built from my own tracking.
  • Daily tracking from 20 August to 15 September: 26 days, morning and evening.
New to download or request
  • The card as PDF, plain text and JSON — the plain text so a doctor can paste it straight into an email or a note.
  • Daily tracking as a CSV.
  • The 14 September bloods as a PDF, identifiers redacted.
  • The Cycle 3 map as a PDF.
  • The Radical Health report generated from my records.
What it flagged up
  • A genetic specialist in Australia started a conversation about mapping my whole genome rather than relying on panel tests.
  • Serova, who work on cancer vaccines, began looking at whether there's a vaccine approach for my smouldering myeloma.
  • A vaccine specialist in Argentina started sending approaches and research worth taking to my team.
  • Redacted everything before publishing: NHS number, hospital numbers, address, and the names of clinicians and lab staff.
See the live profile The whole record