{ "meta": { "as_at": "30 September 2026", "version": "2026-09-30", "compiled_from": "Lab report 29 Sep 2026, clinic letters 4 and 24 Aug 2026, CT report 23 Jul 2026, chemotherapy prescription chart for 30 Sep 2026, my own daily tracking log to 29 Sep 2026, cycle map for Cycle 4, consolidated molecular summary (integrative oncologist, 17 Sep 2026), EXACTA/Astron and DATAR reports", "live_url": "https://fcancerwith.ai/open-source-me", "as_at_iso": "2026-09-30" }, "person": { "name": "Russ Read-Barrow", "location": "Bath, UK", "contact": "russreadbarrow@gmail.com", "allergies": "No known drug allergies", "ps": "WHO performance status 0" }, "status": { "label": "On treatment", "line": "Cycle 4 of FOLFIRI + cetuximab rechallenge", "next": "Cycle 5 due 14 Oct 2026 · CT after Cycle 5" }, "stats": [ { "label": "Stage", "value": "IV", "sub": "Metastatic" }, { "label": "CEA", "value": "44.6", "sub": "ug/L · 29 Sep 26 · ref 0–5.2" }, { "label": "Cycle", "value": "4", "sub": "of this block · 16th FOLFIRI+cetux overall" }, { "label": "WHO PS", "value": "0", "sub": "Fully active · 24 Aug 26" }, { "label": "PD-L1", "value": "<1%", "sub": "TPS · negative" } ], "diagnosis": { "primary": "Moderately differentiated adenocarcinoma, rectosigmoid colon", "staging": "ypT4a ypN1b (3/24 nodes) M1a V+", "timeline": "Treatment began Dec 2021; primary resected Mar 2022", "sites": "Lungs · mediastinal lymph nodes · liver segment VII (new, Jul 2026)", "other": [ "Smouldering myeloma (diagnosed end of 2021, under haematology surveillance)", "Gilbert's syndrome (can raise bilirubin)" ] }, "molecular": { "tags": [ "KRAS/NRAS wild-type", "BRAF wild-type", "pMMR / MSS", "HER2 IHC 0", "TMB-low · 3 Mut/Mb", "PD-L1 <1% (22C3, 28-8)", "PTEN no variant detected" ], "mutations": [ { "gene": "APC", "change": "p.S1415Rfs*4", "detail": "Frameshift · tissue MAF 8.5% · cfDNA 0.62%", "class": "Pathogenic" }, { "gene": "TP53", "change": "p.R342*", "detail": "Nonsense · tissue MAF 9.21%", "class": "Pathogenic" } ], "source": "EXACTA report, 1 Sep 2025", "vus": "VUS: RUNX1T1, FANCM, CIC, BCR, CYP2D6. Exploratory (Astron/ICC): MTOR and VEGFR1/2 protein positivity, HMGB1 overexpression" }, "treatment": { "regimen": "FOLFIRI + cetuximab (rechallenge, 3rd block)", "cycle_length": "14 days", "cycles": [ { "n": 1, "date": "19 Aug 26" }, { "n": 2, "date": "2 Sep 26" }, { "n": 3, "date": "16 Sep 26" }, { "n": 4, "date": "30 Sep 26", "current": true }, { "n": 5, "date": "14 Oct 26" }, { "n": 6, "date": "TBC" } ], "doses": [ [ "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" ] ], "plan": "Plan: 8–12 weeks, then consider maintenance 5-FU + cetuximab if response is good. CT after Cycle 5.", "dose_note": "Full doses, dose-banded · BSA 2.08 m² (84.5 kg, 185 cm, 16 Sep 26)", "block_note": "This is my third block of this combination and my 16th cycle of it since April 2025.", "dose_source": "From the prescription chart for cycle 4." }, "cea": [ { "date": "2025-04-17", "value": 66.1 }, { "date": "2025-05-01", "value": 85.4 }, { "date": "2025-05-19", "value": 68.2 }, { "date": "2025-06-02", "value": 30.5 }, { "date": "2025-06-16", "value": 17.5 }, { "date": "2025-06-30", "value": 11.4 }, { "date": "2025-08-11", "value": 15.6 }, { "date": "2025-10-07", "value": 32.1 }, { "date": "2025-11-24", "value": 44.6 }, { "date": "2026-01-06", "value": 41.7 }, { "date": "2026-03-02", "value": 38.6 }, { "date": "2026-03-16", "value": 32.5 }, { "date": "2026-03-30", "value": 21.1 }, { "date": "2026-04-20", "value": 16.8 }, { "date": "2026-05-12", "value": 15.8 }, { "date": "2026-07-23", "value": 49.4 }, { "date": "2026-08-07", "value": 87.6 }, { "date": "2026-09-01", "value": 146.0 }, { "date": "2026-09-14", "value": 50.9 }, { "date": "2026-09-29", "value": 44.6 } ], "bloods": { "date": "29 September 2026", "source": "TDL / Bath Clinic, collected 29 September 2026, lab ref on file", "rows": [ [ "Haemoglobin", "126", "g/L", "130–170", "L" ], [ "Red cells", "4.09", "×10¹²/L", "4.40–5.80", "L" ], [ "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/L", "30–130", "H" ], [ "GGT", "23", "U/L", "10–71", "" ], [ "Bilirubin", "21", "µmol/L", "0–20", "H" ], [ "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", "" ] ], "note_65": "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.", "card_rows": [ [ "Haemoglobin", "126", "g/L", "130–170", "L" ], [ "Red cells", "4.09", "×10¹²/L", "4.40–5.80", "L" ], [ "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", "" ], [ "ALT", "23", "U/L", "10–50", "" ], [ "AST", "26", "U/L", "10–50", "" ], [ "ALP", "169", "U/L", "30–130", "H" ], [ "Bilirubin", "21", "µmol/L", "0–20", "H" ], [ "Albumin", "42", "g/L", "35–50", "" ], [ "Globulin", "33", "g/L", "19–35", "" ], [ "Creatinine", "76", "µmol/L", "59–104", "" ], [ "eGFR", ">90", "mL/min/1.73m²", "", "" ], [ "Magnesium", "0.80", "mmol/L", "0.7–1.0", "" ], [ "Potassium", "4.0", "mmol/L", "3.5–5.3", "" ], [ "Adjusted calcium", "2.43", "mmol/L", "2.2–2.6", "" ] ] }, "imaging": { "latest": { "date": "23 Jul 2026", "type": "CT chest, abdomen & pelvis", "headline": "Progression above and below the diaphragm, and a new liver metastasis", "source": "CT report, 23 Jul 2026, compared with May 2026" }, "previous": { "date": "12 May 2026", "type": "CT chest, abdomen & pelvis", "headline": "“Good response to treatment within the mediastinum and lungs.”" } }, "history": [ [ "Dec 21–Feb 22", "Neoadjuvant XELOX ×4 · good partial response" ], [ "Mar–Oct 22", "Primary resected · liver met resected (R0) · adjuvant CAPOX" ], [ "Oct 22–Apr 23", "Lung mets appear, progress · SABR 55 Gy/5" ], [ "Jun & Aug 24", "Lung ablations (1 left, then 1 left + 4 right)" ], [ "Feb 25", "EBUS confirms mediastinal nodal disease" ], [ "Apr–Jul 25", "FOLFIRI + cetuximab ×6 · good partial response" ], [ "Feb–May 26", "Rechallenge ×6 · good response (CT 12 May)" ], [ "Jul–Aug 26", "Progression during the break · FOLFIRI + cetuximab restarted 19 Aug" ] ], "protocol": { "status": "Current meds · 17 Sep", "groups": [ [ "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" ] ], "planned": { "as_at": "13 October 2026", "source": "Proposed by my integrative oncologist (private). Not yet discussed with my primary oncologist or the NHS team.", "steps": [ "Metformin MR 500 mg — introducing; not yet tolerated (stomach), retrying from Cycle 5 day 4", "Mebendazole — over the next few weeks", "Atorvastatin — over the next few weeks" ], "note": "Each step is subject to tolerance. Nothing here is agreed with my treating oncologist yet." } }, "seeking": { "trials": [ "BNT314 + pumitamig (BNT327) + chemo · MSS/pMMR mCRC", "Botensilimab + balstilimab · pre-treated MSS CRC", "WNT/β-catenin-targeted: ST316 (NCT05848739, phase 1–2) · tegavivint" ], "ask": "Know this profile? Patients with similar disease, oncologists, scientists and geneticists — I want to hear from you. Not generic advice, please." }, "letters": [ { "date": "24 Aug 2026", "role": "Consultant clinical oncologist", "type": "Pre-assessment before cycles 2 and 3", "points": [ "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." ] }, { "date": "4 Aug 2026", "role": "Consultant clinical oncologist", "type": "Review of expedited CT", "points": [ "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." ] } ], "scans": [ { "date": "23 Jul 2026", "type": "CT chest, abdomen & pelvis", "cls": "prog", "headline": "Progression above and below the diaphragm; new segment VII liver metastasis", "detail": "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." }, { "date": "12 May 2026", "type": "CT chest, abdomen & pelvis", "cls": "resp", "headline": "Good response in the mediastinum and lungs", "detail": "“Good response to treatment within the mediastinum and lungs.” Compared with January 2026. End of the Feb–May 2026 block." }, { "date": "6 Jan 2026", "type": "CT thorax, abdomen & pelvis", "cls": "prog", "headline": "Further mild progression", "detail": "“Further mild increase in intrathoracic lymph nodes and pulmonary disease. Short very severe stenosis left upper lobe bronchus suggesting imminent occlusion.”" }, { "date": "7 Oct 2025", "type": "CT thorax, abdomen & pelvis", "cls": "prog", "headline": "Enlarging chest nodes, possible progression", "detail": "“Enlarging intrathoracic lymph nodes and pulmonary opacities may reflect tumour progression, though cannot exclude superadded infection.”" }, { "date": "8 Jul 2025", "type": "CT thorax, abdomen & pelvis", "cls": "resp", "headline": "Good partial response", "detail": "“Good partial response to treatment of the mediastinal and right hilar nodes. The right middle lobe nodule has resolved.”" } ], "routine": [ [ "08:00", "Domperidone (anti-sickness)" ], [ "08:30", "Breakfast with citalopram, antihistamine and coffee" ], [ "09:00", "Home-made tomato juice and raw apple cider vinegar mix (mostly because I crave it)" ], [ "09:30", "Laxido, dose 1 of 2" ], [ "Late morning", "Doxycycline (prescribed for cetuximab skin rash)" ], [ "12:30–15:00", "Bed rest / sleep" ], [ "Day 4 onwards", "Metformin 500 mg MR, building to twice daily if tolerated (new this cycle)" ], [ "15:30", "Laxido, dose 2 of 2" ], [ "18:00", "Family dinner" ], [ "Bedtime", "Melatonin 60 mg · zopiclone if needed during the post-steroid wide-awake nights" ] ], "myeloma": "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).", "care_team": [ [ "Primary oncologist", "Consultant clinical oncologist, Bath Clinic" ], [ "Haematologist", "Consultant haematologist, Bath Clinic (smouldering myeloma)" ], [ "Respiratory", "Consultant respiratory physician, Bath Clinic" ], [ "Integrative", "Integrative oncologist (private), separate from my NHS/Bath Clinic team" ] ], "lab_panels": { "intro": "Three laboratory panels have been run on my tumour cells. These rank relative activity in a lab assay. They are not response rates, they don't predict tumour shrinkage or survival, and they are not evidence that any agent works in me. They're useful for ranking ideas and for generating questions, nothing more.", "groups": [ { "name": "DATAR / Exacta · repurposed and non-oncology agents", "items": [ [ "Chloroquine", "48%" ], [ "Ivermectin", "47%" ], [ "Doxycycline", "40%" ], [ "Propranolol", "38%" ], [ "Mebendazole", "35%" ], [ "Metformin", "34%" ], [ "Fenbendazole", "33%" ], [ "Melatonin", "31%" ], [ "Pantoprazole", "30%" ], [ "Aspirin", "28%" ] ] }, { "name": "Exacta · other agents", "items": [ [ "Dichloroacetate (DCA)", "49%" ], [ "Mistletoe (Helixor A)", "46%" ], [ "Cannabidiol", "44%" ], [ "Indole-3-carbinol", "43%" ], [ "Resveratrol", "42%" ], [ "Artesunate", "37%" ], [ "Bromelain", "36%" ], [ "Quercetin", "24%" ] ] }, { "name": "ChemoScale", "items": [ [ "Vitamin C / ascorbic acid", "50%" ] ] } ], "caveat": "On the vitamin C result: ex vivo activity doesn't establish a clinical response, intravenous and oral vitamin C reach very different levels, G6PD status and kidney function need checking before any high-dose intravenous programme, timing around chemo needs the oncology team, and it shouldn't replace a regimen that's working.", "kind": "ex_vivo_laboratory_assay", "is_treatment_list": false, "warning": "Agents listed were tested on tumour cells in a laboratory. They are not medicines taken by the patient and not evidence of clinical benefit." }, "data_gaps": [ "Full original colorectal histopathology report", "Complete molecular report covering all tested KRAS and NRAS exons", "The platelet count from 29 September 2026 — the figure on my copy of the report is unreadable", "The original Astron report, not just the interpretive slide deck", "Original DATAR/Exacta and ChemoScale laboratory reports, with methods and controls", "Whether MTOR was assessed by immunocytochemistry, sequencing or copy number", "Whether the VEGFR1/2 findings refer to tumour cells, circulating tumour cells or another population", "Any earlier broad NGS results (PIK3CA, POLE/POLD1, NTRK, RET, ALK, ROS1, tumour mutational burden)", "Current ctDNA or liquid biopsy results, if any", "RECIST measurements from the CT after cycle 5" ], "press": [ { "outlet": "Health Awareness", "kind": "Feature", "date": "2026", "title": "I have stage 4 cancer — AI is how I took back control", "note": "Written by me for Mediaplanet's Health Awareness supplement, distributed with the Guardian.", "url": "https://www.healthawareness.co.uk/digital-health/i-have-stage-4-cancer-ai-is-how-i-took-back-control/" }, { "outlet": "Business Insider", "kind": "Interview", "date": "September 2026", "title": "A 43-year-old with colon cancer used AI in 3 ways to help make treatment a little easier", "note": "How I use AI for symptom tracking, medication and my medical records.", "url": "https://www.businessinsider.com/man-with-colon-cancer-uses-ai-to-manage-his-symptoms-2026-9" }, { "outlet": "Faces of Digital Health", "kind": "Podcast", "date": "April 2026", "title": "The Agentic Patient 2: One Tool, One Job — cancer management AI toolset", "note": "A long conversation about the tools I use alongside NHS treatment, and where they help.", "url": "https://podcasts.apple.com/us/podcast/the-agentic-patient-2-one-tool-one-job-cancer/id1194284040?i=1000764804039" }, { "outlet": "Part-time Works (Timewise)", "kind": "Podcast", "date": "2026", "title": "Special episode: working with a health condition", "note": "On working through treatment, and what good employer practice actually looks like.", "url": "https://timewise.co.uk/podcast/special-episode-2/" }, { "outlet": "HIMSS Europe", "kind": "Main stage", "date": "June 2026, Copenhagen", "title": "The patient on the panel", "note": "Speaking about patients, data and AI to a room full of health-tech.", "url": "blog/himss-europe-the-patient-on-the-panel.html" } ], "tracking": { "from": "2026-08-20", "to": "2026-09-29", "cycles": "Cycles 1, 2 and 3 of the current block", "note": "Scored morning and evening in my own words, then turned into numbers by the tracker. One day missing (28 Aug, a wedding). Nausea and rash are the day's peak; bowel is yes if anything moved at all.", "rows": [ { "date": "2026-08-20", "cycle": 1, "day": 2, "mood_am": 6.0, "energy_am": 6.0, "mood_pm": 7.0, "energy_pm": 5.0, "nausea": 0.0, "rash": 1.0, "bowel": false, "note": "Day 1 post-infusion (FOLFIRI + Cetuximab). First day without Whoop tracking. Had a rest window/nap between 1:00 PM and 3:00 PM (slept for ~1 hour). Productive afternoon doing light garden work, followed by dinner downstairs and a family movie night with the kids. No bowel movement logged today." }, { "date": "2026-08-21", "cycle": 1, "day": 3, "mood_am": 6.0, "energy_am": 7.0, "mood_pm": 6.0, "energy_pm": 4.0, "nausea": 0.0, "rash": 0.0, "bowel": true, "note": "" }, { "date": "2026-08-22", "cycle": 1, "day": 4, "mood_am": 6.0, "energy_am": 7.0, "mood_pm": 3.0, "energy_pm": 4.0, "nausea": 0.0, "rash": 0.0, "bowel": true, "note": "Day 3 post-infusion / Day 4 of cycle (FOLFIRI + Cetuximab). Started with a solid morning walk, but mood and energy dropped significantly by evening (Mood 3/10, Energy 4/10). Heavy fish and chips meal caused prolonged fullness and abdominal discomfort. Sleep was severely fragmented—waking every 1 to 2 hours with vivid dreams, a continuing theme over recent nights." }, { "date": "2026-08-23", "cycle": 1, "day": 5, "mood_am": 6.0, "energy_am": 4.0, "mood_pm": 5.0, "energy_pm": 3.0, "nausea": 0.0, "rash": 0.0, "bowel": false, "note": "Day 4 post-infusion / Day 5 of cycle (FOLFIRI + Cetuximab). Mood sat between 5-6/10 today, but energy remained low (3-4/10) following a broken night's sleep and physical exertion on the Cheese Cafe loop. Significant abdominal bloating by Sunday evening due to persistent sluggish bowel motility. Zero active nausea or rash throughout the day. Took Dulcoease at bedtime to encourage a morning bowel mo" }, { "date": "2026-08-24", "cycle": 1, "day": 6, "mood_am": 3.0, "energy_am": 5.0, "mood_pm": 3.0, "energy_pm": 4.0, "nausea": 0.0, "rash": 0.0, "bowel": false, "note": "Day 5 post-infusion / Day 6 of cycle (FOLFIRI + Cetuximab). A very difficult day mentally and physically. Severe abdominal cramping hit in the morning due to a sluggish bowel, forcing Russ to stay home and miss the family circus trip. Outing to the cinema in the evening was marred by an argument with Katie. Feeling depressed, fed up, and emotionally drained. Took Zopiclone again to secure unbroken" }, { "date": "2026-08-25", "cycle": 1, "day": 7, "mood_am": 6.0, "energy_am": 5.0, "mood_pm": 6.0, "energy_pm": 4.0, "nausea": 1.0, "rash": 1.0, "bowel": false, "note": "Day 6 post-infusion / Day 7 of cycle (FOLFIRI + Cetuximab). Good uninterrupted sleep on Zopiclone set up a positive morning with the kids in town and at the museum. Needed an afternoon bed rest after energy lagged. Midday nausea cleared completely by evening. Nose blotchiness settled. Evening energy sat at 4/10, but overall mood remained steady at 6/10." }, { "date": "2026-08-26", "cycle": 1, "day": 8, "mood_am": 7.0, "energy_am": 7.0, "mood_pm": 6.0, "energy_pm": 5.0, "nausea": 0.0, "rash": 3.0, "bowel": false, "note": "Day 7 post-infusion / Day 8 of cycle (FOLFIRI + Cetuximab). Solid start to the day, but energy dipped to 5/10 by evening. Noticed new spots appearing on the nose (rash elevated to 3/10). Bowel motility remains very sluggish despite laxative support. Waking with persistent headaches, likely secondary to dehydration." }, { "date": "2026-08-27", "cycle": 1, "day": 9, "mood_am": 6.0, "energy_am": 5.0, "mood_pm": 7.0, "energy_pm": 6.0, "nausea": 0.0, "rash": 2.0, "bowel": false, "note": "Day 8 post-infusion / Day 9 of cycle (FOLFIRI + Cetuximab). Started tired (5/10 energy) after a rough night with 4–5 hours sleep after skipping Zopiclone. Pushed through to hit the gym at 9:30 AM for the first time this cycle, then spent 2 hours helping set up for the wedding. Despite minimal daytime rest (20–30 mins nap), physical activity boosted evening mood to 7/10 and energy to 6/10. Facial r" }, { "date": "2026-08-29", "cycle": 1, "day": 11, "mood_am": 8.0, "energy_am": 7.0, "mood_pm": 8.0, "energy_pm": 7.0, "nausea": 0.0, "rash": 4.0, "bowel": true, "note": "Cycle 1, Day 11 (FOLFIRI + Cetuximab). First day this cycle without needing a daytime sleep or nap. Sustained strong energy (7/10) and mood (8/10) throughout the entire day despite heavy drinking at Friday's wedding. Bowel movements returned to a normal rhythm. Rash flared to a 4/10 with visible spots developing on the nose and face." }, { "date": "2026-08-30", "cycle": 1, "day": 12, "mood_am": 8.0, "energy_am": 7.0, "mood_pm": 8.0, "energy_pm": 5.0, "nausea": 0.0, "rash": 3.0, "bowel": true, "note": "Cycle 1, Day 12 (FOLFIRI + Cetuximab). Attended a morning meeting, which meant skipping daytime sleep. Mood remained very high (8/10) all day, though energy naturally tapered off to 5/10 by evening. Rash stabilized at 3/10. Bowel function remained completely normal." }, { "date": "2026-08-31", "cycle": 1, "day": 13, "mood_am": 7.0, "energy_am": 8.0, "mood_pm": 7.0, "energy_pm": 5.0, "nausea": 0.0, "rash": 2.0, "bowel": true, "note": "Cycle 1, Day 13 (FOLFIRI + Cetuximab). Solid day overall with an 8/10 morning energy peak. Spent active time doing DIY garage work with his dad, gardening, and playing with the kids. Pre-existing groin strain flared up by evening, requiring painkillers. Noticed ongoing friction with staggering Zopiclone doses effectively. Cetuximab rash continued to resolve to 2/10." }, { "date": "2026-09-01", "cycle": 1, "day": 14, "mood_am": 8.0, "energy_am": 7.0, "mood_pm": 8.0, "energy_pm": 6.0, "nausea": 0.0, "rash": 2.0, "bowel": false, "note": "Cycle 1, Day 14 (Final day of Cycle 1). Ended the cycle in a strong position with an 8/10 mood and 7/10 energy. Rash remained stable at 2/10 with zero nausea. Groin strain managed with analgesics while monitoring for potential bowel sluggishness. Prepared for Cycle 2 infusion tomorrow." }, { "date": "2026-09-02", "cycle": 2, "day": 1, "mood_am": 7.0, "energy_am": 7.0, "mood_pm": 6.0, "energy_pm": 4.0, "nausea": 0.0, "rash": 1.0, "bowel": true, "note": "Cycle 2, Day 1 (Infusion Day). Transitioned to a flexible, narrative-first tracking method. Discharged earlier than usual (~5:00 PM). Energy dropped as the day wore on, feeling physically shattered by evening with an early sense of feeling slightly blocked up in the gut. Ate dinner downstairs, then headed upstairs to rest. Mindset is calm and focused on pacing, hydration, and gentle movement, with" }, { "date": "2026-09-03", "cycle": 2, "day": 2, "mood_am": 7.0, "energy_am": 6.0, "mood_pm": 7.0, "energy_pm": 4.0, "nausea": 0.0, "rash": 0.0, "bowel": true, "note": "Cycle 2, Day 2 (Day 1 post-infusion). Productive, proactive day: light household admin, sorted cables, laundry, and two separate walking outings. Rested with an early afternoon lie-down (12:45 PM). Switched laptop on in the evening—a notable milestone for work engagement. Thinking about work felt logical rather than overwhelming. Shattered by evening after cumulative activity." }, { "date": "2026-09-04", "cycle": 2, "day": 3, "mood_am": 6.5, "energy_am": 4.5, "mood_pm": 7.0, "energy_pm": 5.5, "nausea": 0.0, "rash": 0.0, "bowel": true, "note": "Cycle 2, Day 3 (Day 2 post-infusion). Up early to see Lila off. Rested in bed with Rex (who was unwell), journaling in notebook and mapping future AI concepts. Walked at midday, followed by an afternoon nap (~1:30 PM – 4:00 PM). Spent 5:30 PM – 7:30 PM at the Cricket Club socializing with friends (non-alcoholic). Watched half a movie with the kids. Good day overall despite waking tired." }, { "date": "2026-09-05", "cycle": 2, "day": 4, "mood_am": 5.5, "energy_am": 3.5, "mood_pm": 4.5, "energy_pm": 2.5, "nausea": 2.0, "rash": 0.0, "bowel": true, "note": "Cycle 2, Day 4 (Day 3 post-infusion — Entering \"The Dip\"). Marked as the hardest day of the cycle so far. Heavy grogginess, lethargy, and lack of energy, compounded by warm, humid 24°C weather. Took an early afternoon lie-down. Stomach felt murky and unsettled throughout the late afternoon. Bowel movements continued to pass normally." }, { "date": "2026-09-06", "cycle": 2, "day": 5, "mood_am": 3.5, "energy_am": 3.5, "mood_pm": 3.0, "energy_pm": 2.0, "nausea": 3.5, "rash": 0.0, "bowel": false, "note": "Cycle 2, Day 5 (Peak Cytotoxic Nadir). Woke up fine, but hit by sudden, severe abdominal cramping around 11:00 AM while sorting the office. Morning smoothie went down poorly. Spent the day horizontal in bed feeling exhausted and restless, with exertional breathlessness on stairs. Dinner was very heavy and failed to relieve the trapped stomach discomfort. Highly anxious about friends visiting Bath " }, { "date": "2026-09-07", "cycle": 2, "day": 6, "mood_am": 2.5, "energy_am": 3.0, "mood_pm": 7.5, "energy_pm": 5.0, "nausea": 4.5, "rash": 0.0, "bowel": false, "note": "Cycle 2, Day 6 (Concluding \"The Dip\"). Woke at 6:30 AM and suffered 45 minutes of agonizing stomach spasms trying to process Sunday's heavy dinner. Rallied and spent the afternoon in Bath with close friends. Drank alcohol-free beers, walked around town, and stayed out the entire duration. Discovered the power of positive cognitive distraction to override physical discomfort. Returned home tired bu" }, { "date": "2026-09-08", "cycle": 2, "day": 7, "mood_am": 4.5, "energy_am": 3.5, "mood_pm": 6.0, "energy_pm": 4.0, "nausea": 3.0, "rash": 0.0, "bowel": false, "note": "Cycle 2, Day 7 (Transition to Rebound). Very broken night with only 3–4 hours of sleep. Up at 7:00 AM to help kids, back to bed after 9:00 AM for a 1–1.5 hour sleep. Felt comfortable lying still, but rough and motion-sensitive upon moving. Struggled with a sensation of incomplete evacuation and flatulence as the gut worked through the backlog. Felt guilty about not helping Katie more and anxious a" }, { "date": "2026-09-09", "cycle": 2, "day": 8, "mood_am": 7.0, "energy_am": 5.5, "mood_pm": null, "energy_pm": null, "nausea": 0.0, "rash": 0.0, "bowel": true, "note": "Cycle 2, Day 8 (Active Rebound). Woke up with bowel motility finally clearing the backlog, leading to immediate physical relief. Successfully completed an 8:00 AM one-on-one gym session with Tom—the first gym class of this cycle. Followed up with a local walk around Chelsea Road, which prompted a brief lie-down due to lingering sluggishness. Energy feels like it needs a boost, but physical capacit" }, { "date": "2026-09-10", "cycle": 2, "day": 9, "mood_am": 7.5, "energy_am": 6.5, "mood_pm": 8.0, "energy_pm": 6.0, "nausea": 0.0, "rash": 1.0, "bowel": true, "note": "Cycle 2, Day 9 (Rebound / Cutaneous Phase). Woke up feeling clear-headed and well-rested. Bowel motility has completely normalized following the early-week backlog, leading to a noticeable lift in overall baseline physical comfort. Successfully went for a 45-minute morning walk with zero exertional dyspnea or abdominal discomfort. Spent the afternoon doing light tasks around the house without need" }, { "date": "2026-09-11", "cycle": 2, "day": 10, "mood_am": 8.0, "energy_am": 7.0, "mood_pm": 8.5, "energy_pm": 6.5, "nausea": 0.0, "rash": 2.5, "bowel": true, "note": "Cycle 2, Day 10 (Rebound & Cutaneous Peak). Strong start to the day. Hitting the gym for a structured session felt great and caused no joint strain or premature fatigue. In the late afternoon, the classic Cetuximab EGFR rash began surfacing on the nose and cheeks with mild tingling. Proactively applied barrier and moisturizing cream to prevent skin cracking. Evening was calm and enjoyable with Kat" }, { "date": "2026-09-12", "cycle": 2, "day": 11, "mood_am": 8.5, "energy_am": 8.0, "mood_pm": 8.0, "energy_pm": 7.0, "nausea": 0.0, "rash": 3.0, "bowel": true, "note": "Cycle 2, Day 11 (Peak Performance Window). Entering the high-stamina phase of the cycle. Spent the majority of the day out and about with Katy, Rex, and Lyla. Energy stayed high (8/10) through the morning and early afternoon without requiring a nap. Cetuximab rash remains present at a 3/10 on the nose, but skin feels supple rather than dry or painful due to regular moisturizing. No digestive issue" }, { "date": "2026-09-13", "cycle": 2, "day": 12, "mood_am": 8.5, "energy_am": 8.0, "mood_pm": 8.0, "energy_pm": 6.5, "nausea": 0.0, "rash": 2.5, "bowel": true, "note": "Cycle 2, Day 12 (Peak Performance Window). Another strong day overall. Handled light DIY projects and home setup tasks during the morning with plenty of physical stamina. Took a brief lie-down in the afternoon to pace energy for the evening. Skin rash on the face has started to settle from its Saturday peak, down to 2/10. Sleep quality has been consistently solid over the weekend." }, { "date": "2026-09-14", "cycle": 2, "day": 13, "mood_am": 8.0, "energy_am": 8.0, "mood_pm": 8.5, "energy_pm": 7.0, "nausea": 0.0, "rash": 2.0, "bowel": true, "note": "Cycle 2, Day 13 (Peak Performance Window). Woke up feeling energetic and focused. Completed a 30-minute indoor spin session in the morning, keeping heart rate comfortably within Zones 1 and 2. Spent part of the day catching up on logical work admin and planning without feeling mentally drained. Digestion remains smooth and predictable. Skin rash continues to subside." }, { "date": "2026-09-15", "cycle": 2, "day": 14, "mood_am": 8.0, "energy_am": 7.5, "mood_pm": 8.0, "energy_pm": 6.5, "nausea": 0.0, "rash": 1.5, "bowel": true, "note": "Cycle 2, Day 14 (Final Day of Cycle 2). Ended Cycle 2 in a very strong physiological position. Energy and mood have remained stable at 7.5–8/10. Focused today on pre-infusion hydration and rest to prepare for Cycle 3 tomorrow. GI tract is completely clear and operating normally. Mindset is calm, grounded, and clear as Cycle 3 approaches." }, { "date": "2026-09-16", "cycle": 3, "day": 1, "mood_am": 7.0, "energy_am": 7.0, "mood_pm": 6.5, "energy_pm": 4.5, "nausea": 1.0, "rash": 1.0, "bowel": true, "note": "Cycle 3, Day 1 (infusion day). FOLFIRI + cetuximab, standard pre-meds including IV dexamethasone and the domperidone protocol. Discharged late afternoon, physically drained from chair time. Dexamethasone keeping me alert despite the tiredness. Gut quiet by evening, so stuck firmly to light food — broth and a bland dinner — to avoid an early transit block." }, { "date": "2026-09-17", "cycle": 3, "day": 2, "mood_am": 7.0, "energy_am": 6.0, "mood_pm": 6.5, "energy_pm": 4.5, "nausea": 1.0, "rash": 0.0, "bowel": true, "note": "Cycle 3, Day 2. Fragmented sleep overnight on steroid alertness. Kept output modest: a gentle 30-minute walk and some garden puttering, with a flat rest 1:30–3:30 PM. Soft eggs, plain toast, warm vegetable broth. A small pellet-like movement with laxative support — the key thing being it didn't shut off completely." }, { "date": "2026-09-18", "cycle": 3, "day": 3, "mood_am": 6.5, "energy_am": 5.0, "mood_pm": 6.0, "energy_pm": 4.0, "nausea": 1.0, "rash": 0.0, "bowel": true, "note": "Cycle 3, Day 3. Pump disconnected. First loose stools of the cycle, but the stomach stayed settled with no cramping — the gentle diet appears to be protecting the lining. Short walk round the block, mandatory lie-down 1:30–3:45 PM. Could feel the start of the fatigue wall as the steroids washed out." }, { "date": "2026-09-19", "cycle": 3, "day": 4, "mood_am": 5.0, "energy_am": 3.5, "mood_pm": 5.0, "energy_pm": 3.0, "nausea": 2.0, "rash": 0.0, "bowel": true, "note": "Cycle 3, Day 4 (the dip). Deep cellular exhaustion, the classic heavy-limbed wall. Rest day, indoor movement only, sleeping and dozing 1:00–4:15 PM. Kept meals strictly soup-based and sidestepped the severe gastrocolic spasms that hit on the equivalent weekend in Cycle 2. Paused the aggressive laxatives to avoid swinging into hyper-motility." }, { "date": "2026-09-20", "cycle": 3, "day": 5, "mood_am": 5.5, "energy_am": 3.0, "mood_pm": 6.0, "energy_pm": 3.5, "nausea": 1.0, "rash": 1.0, "bowel": true, "note": "Cycle 3, Day 5 (peak nadir). Energy very low, noticeably more fatigued than Saturday — but vastly better than Cycle 2 Day 5, where the blockage and breathlessness were the story. Gentle garden stroll with Rex and Lyla, mandatory afternoon sleep window respected. Soups, eggs on toast, hydration salts. No GI emergency at all this time." }, { "date": "2026-09-21", "cycle": 3, "day": 6, "mood_am": 6.0, "energy_am": 4.0, "mood_pm": 6.5, "energy_pm": 4.5, "nausea": 0.0, "rash": 1.0, "bowel": true, "note": "Cycle 3, Day 6 (tail of the dip). The heavy fog started lifting by late afternoon. Managed household tasks, time with Katy and a steady 40-minute walk into town, with a lie-down 2:00–3:15 PM. Stepped the food up to poached chicken, rice and steamed greens. Digestion predictable and pain-free." }, { "date": "2026-09-22", "cycle": 3, "day": 7, "mood_am": 7.0, "energy_am": 5.5, "mood_pm": 7.5, "energy_pm": 6.0, "nausea": 0.0, "rash": 2.0, "bowel": true, "note": "Cycle 3, Day 7 (rebound). A genuine milestone day: cleared the nadir cleanly, back to the gym for light Zone 1 mobility and bodyweight work, and sustained productive focus at the desk. Motility regular enough to stop Laxido entirely. Cetuximab rash starting its scheduled appearance on the nose. Slept naturally, no Zopiclone." }, { "date": "2026-09-23", "cycle": 3, "day": 8, "mood_am": 7.5, "energy_am": 6.5, "mood_pm": 8.0, "energy_pm": 6.5, "nausea": 0.0, "rash": 3.0, "bowel": true, "note": "Cycle 3, Day 8 (active rebound). Woke refreshed after a solid unassisted night. Morning gym session — controlled strength work plus 20 minutes on the spin bike — with no lingering exhaustion afterwards. Mental clarity high, handled substantial desk work and family logistics. Nose spots tingling, keeping them heavily moisturised." }, { "date": "2026-09-24", "cycle": 3, "day": 9, "mood_am": 8.0, "energy_am": 7.0, "mood_pm": 8.0, "energy_pm": 7.0, "nausea": 0.0, "rash": 3.0, "bowel": true, "note": "Cycle 3, Day 9. Stamina climbing steadily. Brisk 50-minute outdoor walk, then finished the packing and prep for Montenegro without feeling rushed. Bowels running to a predictable schedule with zero laxatives. Cetuximab rash present but contained." }, { "date": "2026-09-25", "cycle": 3, "day": 10, "mood_am": 8.5, "energy_am": 7.5, "mood_pm": 8.5, "energy_pm": 7.0, "nausea": 0.0, "rash": 3.0, "bowel": true, "note": "Cycle 3, Day 10 (travel to Montenegro). Travel went smoothly and energy held well through the airport and transit. Arrived in high spirits and ate fresh Mediterranean fish and grilled vegetables. Skin distinctly dry around the nose and face from cabin air, but moisturiser kept the irritation in check. Some travel-related gut stasis and gas." }, { "date": "2026-09-26", "cycle": 3, "day": 11, "mood_am": 9.0, "energy_am": 8.0, "mood_pm": 8.5, "energy_pm": 7.5, "nausea": 0.0, "rash": 3.0, "bowel": true, "note": "Cycle 3, Day 11 (Montenegro). A brilliant, restorative day outdoors — extensive walking, boat trips, exploring. High stamina throughout and mood up to 9. Loose stools during the day, most likely a mix of travel, local olive oils and chemo motility, but no pain and no cramping. Skin dry, nose rash stable." }, { "date": "2026-09-27", "cycle": 3, "day": 12, "mood_am": 9.0, "energy_am": 8.0, "mood_pm": 8.5, "energy_pm": 7.0, "nausea": 0.0, "rash": 2.5, "bowel": true, "note": "Cycle 3, Day 12 (Montenegro). Another strong day with high vitality — coastal walks, sightseeing and swimming, strict on the SPF. Loose stools settled back toward baseline and the cetuximab rash subsided from its peak. Mental clarity and wellbeing couldn't have been better." }, { "date": "2026-09-28", "cycle": 3, "day": 13, "mood_am": 8.0, "energy_am": 7.5, "mood_pm": 8.0, "energy_pm": 6.5, "nausea": 0.0, "rash": 2.0, "bowel": true, "note": "Cycle 3, Day 13 (return home). Back in Bath, feeling grounded and physically sound. Return travel, unpacking and light stretching, then straight into pre-infusion prep mode. Digestion fully formed and calm. Decided against fasting ahead of Cycle 4 in favour of deep hydration and regular nourishment." }, { "date": "2026-09-29", "cycle": 3, "day": 14, "mood_am": 8.0, "energy_am": 7.5, "mood_pm": 8.0, "energy_pm": 7.0, "nausea": 0.0, "rash": 1.5, "bowel": true, "note": "Cycle 3, Day 14 (pre-infusion). Finished Cycle 3 in a remarkably strong position. Rest day with light stretching, clean easily digestible meals and aggressive pre-hydration with electrolytes. Pre-chemo bloods done. Gut totally clear, energy holding near 7.5, rash settled. Calm and focused ahead of Cycle 4." } ] }, "cycle_map": { "cycle": 4, "from": "Wed 30 Sep 2026", "to": "Tue 13 Oct 2026", "next": "Cycle 5: Wed 14 Oct", "new": "Established this cycle: metformin from day 4, stepping up on day 6", "baseline": [ "On waking: domperidone (1 of 3)", "Breakfast: citalopram 30 mg + DulcoEase", "Mid-morning: domperidone (2 of 3)", "Mid-afternoon, after the nap: DulcoEase", "Dinner: doxycycline + domperidone (3 of 3) + metformin from day 4", "Bedtime: DulcoEase + Dulcolax + melatonin 60 mg (zopiclone if needed)" ], "rules": [ "Nap 12–3 PM daily. Weekends are zero work.", "Hydrate hard: water plus electrolytes and salts.", "Stop before the fatigue hits, not after.", "Bowels: prevent, don't chase. DulcoEase 4–5× daily; Dulcolax nightly in week 1, tapering to as-needed once stools soften; Laxido on standby if motility stalls.", "Doxycycline in the evening, after food, upright for 30 minutes, kept 2–3 hours clear of magnesium, iron, calcium or zinc.", "Metformin 500 mg MR at dinner on days 4–5, 1000 mg MR from day 6 if tolerated. Start only once eating and drinking normally; hold if vomiting, significant diarrhoea, dehydration or unwell.", "Work: days 1–4 FC:AI only, light blocks, hard stop on day 4. Days 6–14 Known & Cited, about 20–24 hours across the fortnight.", "Move: spin bike in Zone 1/2, or garden Indian clubs. PT class every Monday — days 6 and 13.", "15-hour overnight fast before infusion day, broken at midday." ], "days": [ [ 1, "Wed 30 Sep", "Infusion day", "5–7", "Hospital transit and chair time. Strict rest after discharge, optional gentle garden stroll if restless.", "FC:AI, 1 hr max. Essential admin and triage only. Close the screen early.", "Bed around 10 PM. Sofa or bed rest after hospital. 6–8 hrs, fragmented on dexamethasone.", "Break the 15-hour fast at midday: bone broth, soft poached eggs. Avoid heavy refeeding. Hydration salts and water." ], [ 2, "Thu 1 Oct", "Steroid phase", "5–7", "Garden Indian clubs or a 45-minute stroll. Avoid structured gym lifting.", "FC:AI, 1–2 hrs. Structured desk tasks, light planning and concept mapping. Stop before fatigue.", "Bed around 10 PM. Mandatory nap 12–3 PM, minimum 60 min. Early waking likely.", "Light and soluble: blended soups, soft eggs, cooked greens, lean poultry. Avoid heavy or fried food." ], [ 3, "Fri 2 Oct", "Steroid washout", "4–6", "Light garden clubs or gentle walking. Listen for a sudden physical drop.", "FC:AI, 1–2 hrs. Brief urgent tasks before midday, then wrap the block cleanly.", "Bed 9:30–10 PM. Dedicated nap 12–3 PM. 8+ hrs — the steroid crash.", "Ultra-gentle: warm vegetable or chicken broth, avocado, soft poached fish or eggs. Small portions, light evenings." ], [ 4, "Sat 3 Oct", "The dip / nadir", "2.5–4", "Cellular fatigue wall. Minimal effort, brief garden air only. Don't fight the lethargy.", "Zero work. Hard boundary — no FC:AI, no screen. Protect mental reserves.", "Bed 9–9:30 PM. Priority bed rest 12–3 PM. 9–10+ hrs.", "Strict pureed and bland: squash or chicken soup, plain rice, soft eggs. Avoid fried food and cold smoothies. Metformin starts, 1 tab. Laxido if motility stalls." ], [ 5, "Sun 4 Oct", "Peak nadir", "2–3.5", "Lowest reserve. Breathlessness on stairs possible. Radical rest, sofa and bed pacing.", "Zero work. Protected family day, low-stress distraction only.", "Bed 9–9:30 PM. Mandatory afternoon sleep 12–3 PM. Prop up if gastric tightness. 9–10 hrs.", "Light warm GI load: steamed fish, poached eggs, warm broths. Continuous water and electrolytes. Metformin 1 tab. Laxido if nothing moves." ], [ 6, "Mon 5 Oct", "Gut transition", "3–5", "PT class in the morning, strictly low-impact and paced. Gentle garden stroll.", "K&C, 1–2 hrs. First K&C session — gentle catch-up, organising, low-stress admin.", "Bed 9:30–10 PM. Essential post-PT lie-down 12–3 PM. 8–9 hrs.", "Transitioning: soft cooked grains, poached eggs, clear vegetable stews. Test tolerance before dense solids. Metformin steps to 2 tabs." ], [ 7, "Tue 6 Oct", "Rebound boundary", "4–6", "Motility waking up. Spin bike in Zone 1, or garden clubs, 20–30 min.", "K&C, 2 hrs. Focused desk block — architecture mapping and operational review.", "Bed 10 PM. 45-minute lie-down 12–3 PM. 8 hrs.", "Stepping up: lean meats, well-cooked vegetables, soft potato or rice. Hydration priority to keep stools soft. Dulcolax tapers to as-needed." ], [ 8, "Wed 7 Oct", "Active rebound", "6–7", "Spin bike in Zone 1/2 or a strength session. Walking around Bath. Pace the intensity.", "K&C, 2.5–3 hrs. Deep strategic work, high mental clarity.", "Bed 10 PM. Post-workout lie-down 12–3 PM. 7.5–8 hrs.", "Normal solids, high protein for recovery. Cetuximab skin care active — barrier creams on." ], [ 9, "Thu 8 Oct", "Stamina rebuild", "6.5–7.5", "Gym strength training or active garden work. Solid stamina building.", "K&C, 3–3.5 hrs. Core product delivery and consultancy, in structured blocks.", "Bed 10–10:30 PM. Brief 30-minute lie-down 12–3 PM. 7.5–8 hrs.", "Full diet, balanced carbs, fats and protein. Rash window: moisturise nose, face and chest." ], [ 10, "Fri 9 Oct", "Peak building", "7–8", "Wattbike spin in Zone 2 or a gym lift. Strong physical resilience.", "K&C, 3–3.5 hrs. Clear the major fortnightly deliverables and close out the work week.", "Bed 10:30 PM. Optional 20-minute power nap. 7.5–8 hrs.", "Full diet, balanced hydration. Maintain the topical cream protocol for the EGFR spots." ], [ 11, "Sat 10 Oct", "Peak performance", "7.5–9", "Extended family outings in Bath. High stamina, zero nap needed.", "Zero work. Protected family weekend with Katy, Rex and Lyla.", "Bed 10:30–11 PM. Consolidated overnight sleep. 7.5–8.5 hrs.", "Full and social eating — family meals, eating out. Keep alcohol minimal, for the liver and the rash." ], [ 12, "Sun 11 Oct", "Peak performance", "7.5–8.5", "Active family day, walking, DIY home setup. Strong muscular recovery.", "Zero work. Family time, relaxed mental focus.", "Bed 10 PM. Wind down early and protect the sleep bank. 8 hrs.", "Whole foods, high water and electrolytes. Keep bowels regular heading into pre-infusion week." ], [ 13, "Mon 12 Oct", "Peak output", "7–8", "PT class in the morning — strong session capacity. Optional light garden clubs in the afternoon.", "K&C, 4–5 hrs. Peak cognitive output — wrap the fortnight's 20–24 hour quota.", "Bed 9:30–10 PM. Priority deep restorative sleep. 8 hrs.", "Normal diet. Balanced dinner ahead of tomorrow's overnight fast." ], [ 14, "Tue 13 Oct", "Pre-chemo fast", "6.5–7.5", "Rest day or light movement — gentle walk or stretching. Protect energy reserves.", "K&C, 3–4 hrs. Final wrap-up and inbox clear. Close the laptop for chemo week.", "Bed 9:30 PM. Zopiclone if needed for solid sleep before the early hospital wake. 8+ hrs.", "Solid nutritious lunch and dinner. Fast from about 9 PM: water, herbal tea, electrolytes through to midday Wednesday." ] ], "ahead": [ "Cycle 5 infusion on Wed 14 Oct 2026.", "CT scan after Cycle 5.", "Whole genome sequencing being arranged after a UK geneticist got in touch.", "Five vials of blood sent to a UK-founded, US-based blood analysis company (not named yet, at their request)." ] }, "sequencing": { "sample_id": "M2508010239", "provider": "Astron / EXACTA (Astron Health)", "collected": "August 2025", "reference_build": "hg19 (GRCh37)", "headline": "517 genes. Not the whole genome, not the whole exome.", "assays": [ [ "Tumour tissue DNA", "Tumour tissue", "Oncomine Comprehensive Plus w3.1 — 517 genes", "Point mutations, insertions and deletions, copy number, tumour mutational burden, microsatellite instability", "TMB 2.84 Mut/Mb · MSI score 2.88 (MSS) · 7,837 variant calls" ], [ "Tumour tissue RNA", "Tumour tissue", "Oncomine Comprehensive Plus w3.1 — fusions", "Gene fusions and rearrangements", "No fusions detected" ], [ "Cell-free DNA/RNA (liquid biopsy)", "Blood", "Oncomine TagSeq Pan-Cancer Liquid Biopsy w2.6", "Circulating tumour DNA — a much smaller panel; 81 genes carry annotations in my file", "813 variant calls · no fusions detected" ], [ "Germline DNA", "Blood", "Ion Torrent S5 germline workflow (low-stringency parameters)", "Inherited variants across the panel regions", "12,778 calls · research-grade output, not a clinical germline test" ], [ "Pharmacogenomics (PGx)", "Blood", "PGx panel", "Genes affecting how I metabolise drugs", "Raw sequencing data only in my package — no variant call file" ], [ "Exosomal transcriptome", "Blood", "Exosomal RNA", "Messenger RNA expression levels", "Absolute read-count table" ] ], "not_done": [ "Whole genome sequencing. All 3.1 billion bases. Not done — this is the single biggest gap, and the thing most people who get in touch assume I've had.", "Whole exome sequencing. The coding regions of all ~20,000 genes. Not done either. The panel above covers 517 of them.", "A matched tumour-normal comparison. My germline sample was sequenced, but the tumour panel is reported tumour-only — the normal wasn't used to subtract inherited variants from the tumour calls. That means the tumour file still contains a lot of my inherited genotype.", "Methylation profiling, proteomics or single-cell sequencing. None of it.", "Serial ctDNA monitoring. One liquid biopsy, taken once — not a series tracked over time.", "Re-analysis on a current reference genome. Everything is aligned to hg19, which has since been superseded by GRCh38." ], "looking_into": [ [ "Whole genome sequencing — tumour and normal, matched", "A bioinformatics researcher read this page, spotted that panel testing isn't the same thing, and pointed out that sequencing the tumour and a normal sample together is what opens up a personalised therapy route. Several others have said the same. I've never had it. An oncologist has since added an important caveat: sequencing deep enough to design a vaccine from is a different job from clinical-range sequencing, usually needs a research lab, and needs a clinician willing to take responsibility for it.", "Pursuing" ], [ "The NHS route to it", "England's Genomic Medicine Service does whole genome sequencing, and the South West hub covers Bath. That's the first door I'm knocking on, rather than assuming I have to go private.", "First call to make" ], [ "Blood analysis", "Five vials went to a UK-founded, US-based blood analysis company at the end of September. I'm not naming them until they say I can.", "Samples sent" ], [ "Re-alignment to GRCh38", "Lifting the existing Astron data onto the current reference build so it's useful to anyone reanalysing it.", "Idea, not started" ], [ "Checking what my earlier germline test covered", "I was tested for heritability years ago and it came back negative. I want to know exactly which genes that test looked at.", "Question for my team" ] ], "raw_data_note": "The full package is 36GB — 23GB of aligned reads, 13GB of raw reads. It's too big for this site, and I'm not putting it up as an open download for a second reason: the germline file is my inherited genome, and so, in part, is the tumour file. That's information about my children, my parents and my siblings as much as it is about me, and they haven't been asked. It also can't be taken back once it's out. So: here's exactly what exists, with checksums. If you're a researcher or clinician who wants it, email me and we'll sort it out.", "files": [ [ "FASTQ", "M2508010239_Tissue_DNA.fastq", "5,144,889,943", "0b6d83ebe9ed1a4dd49cfc4b78b45aa3" ], [ "FASTQ", "M2508010239_cfTNA.fastq", "3,906,710,149", "1e8e813c1ea6abe1a46f84219b1dc153" ], [ "FASTQ", "M2508010239_gDNA.fastq", "1,565,519,090", "0480ae090fb4ab03d31e72c455f05ca8" ], [ "FASTQ", "M2508010239_Exosomal_Transcriptome.fastq", "1,048,170,037", "bcf0cc2c0c0f5982db69169659bec421" ], [ "FASTQ", "M2508010239_PGx.fastq", "720,671,840", "b5d3b6e5457eef106e2d3308c9e2e145" ], [ "FASTQ", "M2508010239_Tissue_RNA.fastq", "508,610,986", "04d9b967a9d32ee3c5fd079ef3b1cecf" ], [ "BAM", "M2508010239_Tissue_DNA.bam", "8,970,533,822", "d64f8c7ba661a10a3b99de850287c92a" ], [ "BAM", "M2508010239_cfTNA.bam", "7,946,894,022", "fd0c1428a3b9c2cd4a773724d4d57c86" ], [ "BAM", "M2508010239_gDNA.bam", "2,653,394,594", "1d85eb7f4bc5af6ec468344398d95ce5" ], [ "BAM", "M2508010239_Exosomal_Transcriptome.bam", "1,936,648,034", "4a902828db37f0b7561e764d4d01df2a" ], [ "BAM", "M2508010239_PGx.bam", "1,223,775,526", "f38f4a3ac8ed82cb7ca3424e6a719473" ], [ "BAM", "M2508010239_Tissue_RNA.bam", "956,262,609", "fcb54f04aa951a2564a25715933f9b05" ], [ "VCF", "M2508010239_gDNA.vcf", "7,371,440", "707a6f0e12cc51b8ee4529d9b490ae1a" ], [ "VCF", "M2508010239_Tissue_DNA.vcf", "6,053,883", "6598e7a718976efb99ddb94cf6debde8" ], [ "VCF", "M2508010239_Tissue_RNA.vcf", "775,131", "eec00abae58eba06c2d2c1464f22b748" ], [ "VCF", "M2508010239_cfTNA.vcf", "601,565", "7a8e6a5fab0deb8c0431f5d019a21a43" ], [ "TSV", "M2508010239_Exosomal_Transcriptome_absolute_count_file.tsv", "197,299", "305381d2e2b14afdd535e9a7724191ed" ] ], "reading": [ [ "Insights for precision oncology from the integration of genomic and clinical data of 13,880 tumors from the 100,000 Genomes Cancer Programme", "Nature Medicine, 2024", "https://www.nature.com/articles/s41591-023-02682-0" ], [ "Real-world clinical utility of tumour whole-genome sequencing in solid cancers", "Nature Medicine", "https://www.nature.com/articles/s41591-026-04280-2" ] ] }, "changelog": [ { "date": "2026-10-01", "label": "1 October 2026", "window": "Cycles 3 and 4 · 16 Sep – 1 Oct", "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." ], "added": [ "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." ], "available": [ "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 One View as PDF, plain text and JSON." ], "flagged": [ "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." ] }, { "date": "2026-09-17", "label": "17 September 2026", "window": "Cycles 1 to 3 · 19 Aug – 17 Sep", "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." ], "added": [ "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." ], "available": [ "The One View 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." ], "flagged": [ "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." ] } ], "corrections": [ { "date": "2026-10-02", "what": "Haemoglobin and red cell count were displaying a HIGH flag when both results are below the reference range. The underlying data was correct; one page template printed “HIGH” for any out-of-range value regardless of direction.", "fix": "Flags now render HIGH or LOW correctly on every page, the card and the plain-text version. Reference ranges are shown beside each value so any flag can be checked at a glance. A validator now recomputes every flag from its own reference range at build time and stops the build on a mismatch, so this cannot recur silently.", "who": "Flagged by my integrative oncologist during a review of this site." }, { "date": "2026-10-02", "what": "Archived dosing tables and laboratory assay results sat in the same document as current information, with no warning directly above them.", "fix": "Every archived dosing table now carries a historical warning immediately above it, and the ex-vivo assay lists carry a separate warning that those agents were tested in a dish and are not medicines I take. The machine-readable data feed now has an explicit reading guide and a current_medicines block, so an AI agent reading it cannot mistake an archived or assay drug for something I am taking.", "who": "Flagged by my integrative oncologist during a review of this site." } ], "_reading_guide": { "note": "Read this before using any field. Keys are grouped by status. Do not present anything outside current_medicines as something Russ is taking.", "current_medicines": "The only authoritative list of what is currently taken. Use this.", "protocol": "Current regimen, grouped. The 'Paused' group is NOT being taken.", "routine": "Current daily timing of the medicines above.", "cycle_map": "The plan for the current chemotherapy cycle. Forward-looking, current.", "lab_panels": "Ex-vivo laboratory assay results on tumour cells. These are NOT treatments, NOT prescriptions and NOT evidence of benefit. Agents named here were tested in a dish, not taken. Never present them as medication.", "history": "Past treatment lines. Historical, not current.", "changelog": "A record of what changed at each fortnightly update.", "archived_protocols": "Not published in this feed. Earlier integrative protocols are on the website under Archive, marked historical, and are deliberately excluded from this machine-readable data." }, "current_medicines": { "as_at": "30 September 2026", "status": "current", "groups": [ { "group": "Chemo day", "detail": "Standard pre-meds (Akynzeo, dexamethasone, chlorphenamine, atropine) · pegfilgrastim 24h after" }, { "group": "Supportive", "detail": "Dexamethasone ×3 days · domperidone · loperamide · doxycycline + Plazon (skin) · Laxido · antihistamine · zopiclone PRN" }, { "group": "Other", "detail": "Citalopram 30 mg (breakfast) · melatonin 60 mg (evening) · loratadine 10 mg" } ], "not_being_taken": [ { "group": "Paused", "detail": "Mistletoe and most supplements / off-label drugs, during chemo on my oncologist's advice" } ], "source": "Patient-maintained, checked against the prescription chart and clinic letters." } }