Live · updated 30 September 2026

Open Source Me

Everything someone needs to understand my cancer, on one page. My bloods, my clinic letters, my scans, my protocol and my chemo plan. Updated every two weeks, in time with my chemo cycle.

If you only take one thing away, take the One View. It's the whole story on one sheet of A4, and it's always the latest version.

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Russ Read-Barrow's One View card, correct as at 30 September 2026. The same information is set out as text on this page.

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The card

My One View

One sheet. Diagnosis, genetics, the chemo I'm on and the exact doses, my latest bloods, how my tumour marker has moved, what the scans say, what I'm taking, and what I'm looking for.

Doctors, nurses, second opinions

Download the PDF, or copy the plain-text version straight into an email or a clinic note. No login, no forms, no chasing me for letters.

Researchers and AI agents

FC:AI One View is the short, structured summary, built on the HL7 mCODE structure: oneview.json. The complete feed — every blood panel, the chemo log, the sequencing manifest — is profile.json, with the source PDFs in the full record.

Everyone else

This is what's possible with the information you already have about yourself. Why I'm doing it →

Right now

The five things that change

Everything below is checked against the source documents before it goes up. Nothing is estimated or carried forward. If a number isn't in a report, it isn't here.

Chemo, doses & plan

Cycle 4 of FOLFIRI + cetuximab

FOLFIRI + cetuximab (rechallenge, 3rd block), every 14 days. This is my third block of this combination and my 16th cycle of it since April 2025.

C119 Aug 26

C22 Sep 26

C316 Sep 26

C430 Sep 26

C514 Oct 26

C6TBC

Cetuximab	500 mg/m²	1000 mg
Irinotecan	180 mg/m²	400 mg
5-FU bolus	400 mg/m²	900 mg
5-FU infusion (46h)	2400 mg/m²	5000 mg
Folinic acid		350 mg

Full doses, dose-banded · BSA 2.08 m² (84.5 kg, 185 cm, 16 Sep 26). From the prescription chart for cycle 4.

Plan: 8–12 weeks, then consider maintenance 5-FU + cetuximab if response is good. CT after Cycle 5.

Next: Cycle 5 due 14 Oct 2026 · CT after Cycle 5

Bloods

29 September 2026

CEA (my tumour marker) was 44.6 ug/L on 29 September 2026. Previous readings: 49.4 → 87.6 → 146 → 50.9. Normal is roughly under 5. CEA is 44.6, down from 50.9 on 14 September and 146.0 on 1 September — a fall of about 69% across three cycles of the restart. ALP has gone 102 (July) → 165 (1 Sep) → 179 (14 Sep) → 169 now. Haemoglobin and red cells have drifted just under range, and bilirubin is marginally over at 21 (I have Gilbert's syndrome). Platelets are not published here because the figure on my copy of the report is unreadable — I'll add it once I have it confirmed.

Marker	Result	Range
Haemoglobin	126 g/LLOW	130–170
Red cells	4.09 ×10¹²/LLOW	4.40–5.80
White cells	9.69 ×10⁹/L	3.0–10.0
Neutrophils	7.15 ×10⁹/L	2.0–7.5
Lymphocytes	1.67 ×10⁹/L	1.2–3.65
Monocytes	0.68 ×10⁹/L	0.2–1.0
Platelets	pending ×10⁹/L	150–400
ALT	23 U/L	10–50
AST	26 U/L	10–50
ALP	169 U/LHIGH	30–130
GGT	23 U/L	10–71
Bilirubin	21 µmol/LHIGH	0–20
Albumin	42 g/L	35–50
Globulin	33 g/L	19–35
Adjusted calcium	2.43 mmol/L	2.2–2.6
Phosphate	0.96 mmol/L	0.8–1.5
Creatinine	76 µmol/L	59–104
eGFR	>90 mL/min/1.73m²
Sodium	136 mmol/L	133–146
Potassium	4.0 mmol/L	3.5–5.3
Urea	4.9 mmol/L	2.5–7.8
Chloride	98 mmol/L	95–108
Magnesium	0.80 mmol/L	0.7–1.0

Every draw since April 2025Full bloods table →

Clinic letters

24 Aug 2026

24 Aug 2026 · Consultant clinical oncologist · Pre-assessment before cycles 2 and 3

First cycle done, with the expected side effects, mainly fatigue.
Go ahead with the next two cycles, pending blood results.
CEA to be monitored. Repeat scan after five cycles to weigh response against side effects and quality of life.
Next review: telephone consultation before cycles 4 and 5. WHO performance status 0.

4 Aug 2026 · Consultant clinical oncologist · Review of expedited CT

CT shows progression at the previous lung and chest lymph node sites, a new liver metastasis (segment 7) and some new small-volume lung metastases. This explains the persistent cough.
Plan: restart FOLFIRI + cetuximab. If it responds well, step down after 8–12 weeks to maintenance 5-FU + cetuximab rather than a full treatment break.
Mistletoe injections to be suspended during chemo, and most supplements too. Any I want to keep can be checked by pharmacy for interactions.

Summaries of the clinical content, not the letters themselves. Personal details and anything that isn't about the cancer are left out.

Scans

23 Jul 2026

23 Jul 2026 · CT chest, abdomen & pelvis

Progression above and below the diaphragm; new segment VII liver metastasis

Compared with May 2026: left perihilar soft tissue up from 3.9 cm to 6.0 cm with distal atelectasis; right lower lobe up from 3.3 cm to 4.2 cm; additional pulmonary nodules new or enlarging; mediastinal nodes increased, particularly subcarinal; new low-density lesion in hepatic segment VII, considered recurrent disease. Portal vein patent. No peritoneal disease, ascites, abdominopelvic adenopathy or aggressive bone lesion.

12 May 2026 · CT chest, abdomen & pelvis

Good response in the mediastinum and lungs

“Good response to treatment within the mediastinum and lungs.” Compared with January 2026. End of the Feb–May 2026 block.

6 Jan 2026 · CT thorax, abdomen & pelvis

Further mild progression

“Further mild increase in intrathoracic lymph nodes and pulmonary disease. Short very severe stenosis left upper lobe bronchus suggesting imminent occlusion.”

Next CT: after cycle 5All scans →

Protocol & a day on chemo

30 September 2026

Most of my integrative protocol (off-label drugs, supplements, mistletoe) is paused while I'm on chemo, on my oncologist's advice. This is everything I'm actually taking.

Chemo day	Standard pre-meds (Akynzeo, dexamethasone, chlorphenamine, atropine) · pegfilgrastim 24h after
Supportive	Dexamethasone ×3 days · domperidone · loperamide · doxycycline + Plazon (skin) · Laxido · antihistamine · zopiclone PRN
Other	Citalopram 30 mg (breakfast) · melatonin 60 mg (evening) · loratadine 10 mg
Paused	Mistletoe and most supplements / off-label drugs, during chemo on my oncologist's advice

The previous protocol (June 2026) is kept in the full record.

A typical day in the first week of a cycle

08:00Domperidone (anti-sickness)
08:30Breakfast with citalopram, antihistamine and coffee
09:00Home-made tomato juice and raw apple cider vinegar mix (mostly because I crave it)
09:30Laxido, dose 1 of 2
Late morningDoxycycline (prescribed for cetuximab skin rash)
12:30–15:00Bed rest / sleep
Day 4 onwardsMetformin 500 mg MR, building to twice daily if tolerated (new this cycle)
15:30Laxido, dose 2 of 2
18:00Family dinner
BedtimeMelatonin 60 mg · zopiclone if needed during the post-steroid wide-awake nights

How I got here

Treatment history

Dec 21–Feb 22Neoadjuvant XELOX ×4 · good partial response
Mar–Oct 22Primary resected · liver met resected (R0) · adjuvant CAPOX
Oct 22–Apr 23Lung mets appear, progress · SABR 55 Gy/5
Jun & Aug 24Lung ablations (1 left, then 1 left + 4 right)
Feb 25EBUS confirms mediastinal nodal disease
Apr–Jul 25FOLFIRI + cetuximab ×6 · good partial response
Feb–May 26Rechallenge ×6 · good response (CT 12 May)
Jul–Aug 26Progression during the break · FOLFIRI + cetuximab restarted 19 Aug

Genetics

Molecular profile

KRAS/NRAS wild-typeBRAF wild-typepMMR / MSSHER2 IHC 0TMB-low · 3 Mut/MbPD-L1 <1% (22C3, 28-8)PTEN no variant detected

APC p.S1415Rfs*4	Frameshift · tissue MAF 8.5% · cfDNA 0.62%
TP53 p.R342*	Nonsense · tissue MAF 9.21%

VUS: RUNX1T1, FANCM, CIC, BCR, CYP2D6. Exploratory (Astron/ICC): MTOR and VEGFR1/2 protein positivity, HMGB1 overexpression. Source: EXACTA report, 1 Sep 2025. Smouldering myeloma under haematology surveillance. Last myeloma markers in my records: 30 Jun 2025, IgG kappa paraprotein, free kappa light chains 22.8 mg/L (range 3.3–19.4).

The ask

Is there anything else I should be doing?

If you understand this profile (a patient with something similar, an oncologist, a scientist, a geneticist) I want to hear from you. Trials, combinations, tests, people I should be talking to.

If it's a juice, a book, or something that worked for a friend's uncle: I know it comes from a good place, but I've had my fill.

How to get in touch What's missing from my record

⚕️ This is my data, shared openly. It is not medical advice and it is not a plan to copy. Take anything useful to your own clinical team.