Clival chordoma: the research so far
Nineteen research threads and the briefs written from them, grouped by question. Briefs are the plain-English versions; research threads carry the sources, evidence levels and PubMed links.
WhiteboardWhere things stand: what we know, what is coming up, what to ask. Kept up to date by Kya.
3D skull base modelThe tumour and its neighbours to scale. Tap a structure for what it does and what to watch for.
Pain and medicines chartEvery score and dose on one timeline, with new symptoms marked. Pinch to zoom, tap any point.
Understanding the tumour
What a chordoma is, how it is told apart from lookalikes, the anatomy around the clivus and what each nerve does.
- Chordoma grows from notochord remnants in the clivus, carries the marker brachyury and is usually slow; it can hide on MRI for years.
- Chondrosarcoma is the main imaging lookalike; only tissue separates them.
- Dedifferentiated and poorly differentiated forms are rare, aggressive and behave like sarcomas; TP53 mutation and INI1 loss mark them.
- The tumour sits among cranial nerves III to VI, the carotids and the basilar artery; each sign maps to a structure.
Pages
- What a chordoma is made ofbrief
Notochord origin, brachyury, slow growth, why it hides on MRI, dedifferentiated and poorly differentiated forms, heterogeneity and biopsy sampling. - Chordoma cells and dedifferentiationresearch
Sixty-three papers on chordoma biology, subtypes, markers and what dedifferentiation means. - Differential diagnosis, imaging and steroidsresearch
Chordoma versus chondrosarcoma, meningioma, schwannoma, lymphoma, pituitary lesions and hypophysitis; what imaging can and cannot separate; the steroid question. - Skull base mapbrief
The structures around the clivus in six directions, each nerve and what its failure looks like, signs mapped to structures, the arteries. - Skull base anatomyresearch
Sources behind the skull base map: cavernous sinus, Dorello's canal, the clivus and its neighbours. - How chordoma cells run and what fuels the aggressive formsbrief
Basics, current papers and twelve outside-the-box ideas ranked: metabolism, PET, brachyury, INI1 loss, transformation, fuel versus signals, diet claims. - Chordoma metabolism and dedifferentiationresearch
Seventy-three papers on chordoma metabolism, sarcoma-like behaviour, transformation, diet trials and targeted-therapy trials. - Tumour genome sequencingbrief
What whole genome sequencing tells the team, the chordoma genome landscape, what it buys and does not. - Rotatable 3D model of the skull basemodel
The tumour and its neighbours to scale, one unit per centimetre; tap a structure for what it does and what to watch for. - Pain and medicines chartchart
Every pain score and every dose on one timeline, sleep shaded, new symptoms starred along the bottom. Pinch to zoom, tap any point or dose for its note.
Tissue and biopsy
The case for and against biopsy, procedure risk, seeding, and what recovery from a biopsy looks like.
- Histology decides the treatment path and NHS proton funding; nothing else does.
- Endonasal biopsy is a short procedure with low complication rates; seeding along the tract is rare and local.
- Delay costs nerve function, which recovers less the longer it is compressed.
- Recovery from a biopsy is days; full surgery is a different order.
Pages
- The case for tissuebrief
Why histology is the pivotal decision, the treatment shape it unlocks, and the honest counter-case. About sixty sources. - Can a biopsy spread it?brief
Seeding rates in chordoma, the hydatid analogy, where the caution is right. - Seeding evidenceresearch
Papers on tract seeding after biopsy and surgery in chordoma and other tumours. - Procedure risks and the cost of delayresearch
Complication rates of endonasal biopsy and what waiting costs. - Recovery burden after biopsyresearch
Time in hospital, crusting, activity limits and risks after a diagnostic endonasal procedure.
Treatment and outcomes
Guidelines, surgery and radiotherapy, what is on the horizon, the recovery timeline and what determines outcome.
- Standard care is maximal safe surgery, then proton or carbon-ion radiotherapy to about 74 Gy(RBE).
- Extent of resection is the strongest treatment factor; spread near the brainstem and optic pathways limits both surgery and dose.
- Hospital is days, wounds weeks, energy months, nerves months to a year; the whole course runs 5 to 8 months.
- No drug is standard for conventional chordoma; sarcoma chemotherapy applies only to the dedifferentiated forms; targeted and immune trials exist.
Pages
- Guidelines and consensusresearch
The European and international consensus on chordoma management, and the UK pathway including the national skull base MDT. - Recovery after surgerybrief
Stage by stage: the operation, hospital, complications, the first six weeks, nerve recovery, proton therapy, work and life. - Recovery timeline after full surgeryresearch
Forty-seven papers on endoscopic versus open surgery, leak and infection rates, nerve recovery, proton courses and return to work. - What determines the outcomebrief
Histology, extent of resection, molecular markers, spread, size, dose, age and fitness, ranked with relative effects. - Outcome determinantsresearch
Fifty-three papers with hazard ratios on subtype, resection, markers, spread, size, radiotherapy dose, age, sex and fitness. - Cutting-edge optionsbrief
Trials of related tumour types, targeted and immune therapies, traditional-origin treatments with trial evidence, ranked. - Cutting edge and traditionalresearch
Sources behind the cutting-edge brief.
Units, surgeons and records
Which unit, who operates, and how to get reports and images moving.
- Skull base chordoma is rare; unit volume and a dedicated skull base team matter.
- The national chordoma and chondrosarcoma skull base MDT in Manchester should see every case.
- Patient choice allows referral to a unit outside the home region.
- Reports and images move fastest through named-person requests and direct image pushes; a subject access request covers the rest.
Pages
- Choosing the centrebrief
Derriford versus Southampton, the case both ways, five questions for each unit. - Derriford versus Southamptonresearch
Volumes, published series, skull base teams and proton links at the two units. - The surgeonsbrief
Who would operate at each unit, training, evidence, gaps, eight questions. - The surgeons: sourcesresearch
Publications and training of the named skull base surgeons. - Getting reports and imagesbrief
Subject access requests, image transfer between trusts, escalation, and how to frame a re-review of an earlier scan.
Pain and medicines
Pain control that leaves thinking intact, gabapentin, cannabinoids.
- Regular slow-release morphine with a short-acting breakthrough dose is the backbone; paracetamol and an anti-inflammatory add to it. Breakthrough counts set the next regular dose; no ceiling, but diminishing returns.
- Gabapentin helps nerve pain slowly, adds sedation to opioids and needs slow steps.
- For clear thinking: paracetamol and anti-inflammatories best, steady-dose opioids next, sedatives worst.
- Cannabinoids: modest symptom evidence, no tumour evidence in chordoma, and interactions to respect.
Pages
- Painkillers and clear thinkingbrief
Which painkillers least affect thinking and communication, ranked bands, a stepwise plan with stop rules, red flags by drug. - Pain and medicines over the months aheadbrief
Where the morphine dose sits, how it moves, switching opioids, the nerve-pain drugs ranked, the specialist tier, safety over months, tapering afterwards, five asks. - Longer-term pain and drug managementresearch
Fifty-six papers and guidelines on opioid dose and rotation, adjuvants, blocks and infusions, safety, driving law and tapering. - Pain managementresearch
Evidence on opioids, NSAIDs, adjuvants and nerve blocks for skull base tumour pain. - Pain drugs and cognitionresearch
Side-effect and cognition data behind the painkiller ranking. - Gabapentin before starting itbrief
Evidence with numbers, a slow schedule on morphine, side effects including cognition and eyes, the morphine interaction, dependence and taper, stop rules. - Gabapentinresearch
Trials, safety warnings and interaction data for gabapentin. - THC and CBDbrief
Tumour evidence (none for chordoma), symptom evidence, safety, the UK position, conditions for a trial. - Cannabinoidsresearch
Cell, animal and human studies on cannabinoids in cancer and symptom control.
Diet, supplements and claims
Plant compounds, vitamins, immune supplements and the public claims checked against the papers.
- No plant compound, vitamin or immune supplement treats chordoma; diet cannot starve it, and restriction diets harm an underweight patient.
- Vitamin D: test and correct to the normal range; megadoses do not help and can harm.
- Vitamin C, low-dose naltrexone, sulforaphane and similar rest on cell-level evidence; some interfere with treatment.
- Food-dose turmeric and black seed are the only adjuncts with conditions; graviola is dangerous.
Pages
- Nine "anticancer" plantsbrief
Researched and ranked; none treats chordoma; graviola dangerous; turmeric and black seed as food-dose adjuncts with conditions. - Plant compoundsresearch
Sources for the plant compounds brief. - LDN, vitamin D and immune supplementsbrief
Low-dose naltrexone (blocks opioids, no chordoma evidence), vitamin D (test and replete, not megadose), immune supplements (no); podcast claims checked. - LDN, vitamin D, immunityresearch
Sources for the LDN and vitamin D brief, plus the OGF-OGFr axis and the randomised evidence on whether opioids affect cancer recurrence. - A high-fat, low-sugar food plan that still gains weightbrief
Why strict ketogenic diets are not recommended for an underweight patient, and the fat-and-protein plan that keeps calories up: rules, a sample day, pantry, watch list. - Holy basil (tulsi): what the evidence saysbrief
The tradition, the 24 human studies, the cancer claim in cells and mice, the COX-2 link, safety, and where it lands for a patient on diclofenac before surgery. - Hydrogen before radiotherapy, hyperbaric oxygen afterbrief
Why antioxidants come off for the whole course of proton therapy and not just the fortnight before, what hyperbaric oxygen is actually evidenced for, and the pressure question a skull base tumour raises. - Hydrogen and hyperbaric oxygen around radiotherapyresearch
The Bairati antioxidant trial, the Kang hydrogen trial, the 2023 Cochrane review, HOPON, and the contraindications that apply to a skull base defect. - Psilocybin as a painkillerbrief
Why the headache trials are weaker than their reputation, what the cancer trials actually measured, and the reason the proposed mechanism is the problem rather than the attraction. - Psilocybin and painresearch
The LSD cold-pressor studies, the three Yale headache trials including the 2026 active-placebo one, the cancer distress trials, the adverse-event meta-analysis, and the UK legal position. - Can the tumour burn ketones, and can her immune system be taught to see itbrief
The chondrosarcoma ketolysis paper, the glioblastoma survival signal, ERGO2, and the randomised brachyury vaccine trial in chordoma. - Ketone utilisation, metabolic adaptability and immunogenicityresearch
Why the Warburg premise behind ketogenic diets fails in chondrosarcoma, how fast the switch happens, brachyury as a vaccine target, and the innate versus adaptive correction. - Metabolic switching and aggressive behaviourresearch
Whether a change of fuel makes a tumour worse: dietary palmitic acid and prometastatic memory, ketones fed to tumours, starvation and hypoxia selecting aggressive cells, the OXPHOS chordoma subtype, and the counter-evidence where ketogenic diets slowed tumours. - Metabolism, immune visibility and chordoma immune escaperesearch
Whether a metabolic switch makes a tumour easier for the immune system to see (glucose competition, lactate, adenosine, lipids, MHC class I under metabolic stress, ketones and CD8 T cells), and the six structural reasons chordoma evades immunity: low mutational burden, HLA class I defects, immune exclusion by stroma, M2 macrophages and exhausted T cells, immunoediting, and the notochord lineage. - Professor Dalgleish checkedbrief
Vitamin D claims versus the trials, the CBD plus THC work, IMM-101, vitamin C oral and intravenous; what transfers. - Dalgleish, vitamin D and adjunctsresearch
Sources for the Dalgleish brief, including VITAL and D-Health.