Cholangiocarcinoma – My  Symptoms, Diagnosis, Prognosis & Treatments

Details

Cholangiocarcinoma

  • Diagnosed 56 yrs October 2016
  • Gold Coast Australia
  • Height 1.70 mtrs
  • Weight December 2016: 87kgs
  • Weight January 2017: 72kgs
  • Weight July 2017: 67kgs
Symptoms
  • Lower Stomach upset and fatigue
  • Pale stools plus slight yellowing of eyes
  • Yellowing became wide spread eyes, face, hands etc
  • Severe itching, beyond sanity
Pre Diagnosis

Dr Cathy Hughes
Tedder Ave Medical Practice

  • Blood tests
  • High Liver Markers
Scans
  • Ultrasound
  • CT Scan
Initial Diagnosis

Cholangiocarcinoma: (bile duct cancer)
Terminal at any stage of discovery

Prognosis
  • Untreated 6 Months.
  • Treated: 6 months – 2 years
Survival Statistics
  • Untreated 5 year survival = 0%
  • Treated 5 years survival = less than 10%
  • Treated but Stage 4 Metastasised 5 year survival = < less than 2%
  • I became stage 4 and metastasised inside 6 months
  • Pop up Stat sheet
The Bile Ducts connects
  • Liver
  • Gallbladder,
  • Stomach,
  • Pancreas
  • Duodenum.
Surgical

Endoscopy procedure:

  • Biopsy
  • Stent
  • Gold Coast University Hospital
  • Surgeon: Michael Murray
  • 5 hour morning procedure

Whipple Procedure

  • 1.5 hrs Aesthetics prep –  10hrs Surgery
  • Gold Coast University Hospital
  • Surgeon: Dr Harold Puhala
  • 7 Surgeon Team
  • Weight pre op: 87kgs

Removed

  • 80% Stomach
  • Bile Duct
  • Gallbladder
  • 33%Pancreas (Head Section)
  • 100% Duodenum
  • 2 Lymph Nodes
  • Main Hepatic Artery

Aneurysm

  • Terminated “Main Hepatic Artery” (Supplies 30% of livers blood)
  • Result of Whipples procedure
  • Emergency Surgery 4 – 5 hours
  • Gold Coast University Hospital.
  • Surgeon/Interventionist Radiologist: Tom Snow
  • Weight post op: 72kgs

Immunohistochemical Testing of Tumour

  • dMMR – Absent MLH1 & PMS2 Proteins
  • MSI-High
  • >49% PD-L1 expression
  • TMB – Tumour Mutation Burden -High-  means a high pace of disease therefore very short survival outlook.

Genetic Profiling

  • Negative for Lynch Syndrome
  • I was only profiled for Lynch.
Post Surgery Treatment

Not Adjuvant

Chemotherapy Trial

  • Origin: Hamburg Germany
  • Duration 5 years
  • Via Royal Brisbane and Womens Hospital, Queensland Australia
  • Head Oncologist: Dr Mathew Burge
  • Chemotherapy 6 months
  • Infusions 3 Weeks on 1 Week off
  • Duration of each Infusion : 5 – 6 hrs
  • Chemotherapy type: Gemcitabine & Cisplatin
  • CT Scans: 12 weekly

Metastasis @ 6months

  • Severe pain in right ribs and shoulder
  • Breathing difficulty is severe
  • Liver multiple (top and ribs)
  • Lung multiple node activity
  • Lung Thickening of the walls
  • Fluid on Lungs
  • Rescanned @ 4 weeks showed rapid multiplication and aggressive growth across liver.
Terminal Outlook
  • Weeks if not days
International immunotherapy Trial
  • 1 of 9 participants to qualify internationally
  • Hospital: Royal Brisbane & Womens Hospital
  • Origin: Merck – California USA
  • Keytruda
  • Keynote Trial 158
  • Australian Trial Link
  • Duration 5 years
  • Head Oncologist: Mathew Burge
  • Infusions: One infusion every 3 weeks
  • Duration of Infusions: 1 hour
  • CT Scans every 9 Weeks
Trial continues until year 2022

Results to date

  • Result Scan 1 (9 weeks) Complete and Full response
  • Result @18 months Persistent Full Response
  • Result for Cholangiocarcinoma cohort of 9 participants = 1 x Complete  response
  • Result for entire Keynote Trial cohort of 98 Participants across a basket of different cancers = 2x Complete and Full Responses.
Family History

Only appearing in one generation and sibling cohort.

Brother Graeme -2 years younger

  • Palmerston North Hospital New Zealand
  • Same diagnosis and location as Steve.
  • Cholangiocarcinoma is not heredity!
  • Diagnosed 2012 – RIP 2014 (23 months) 52yrs.
  • Surgical: Bile Duct resection only,
  • Treatment: 3 months Chemotherapy
  • CT Scans every 6 months, although last scan was 9 months!
  • Oncologist was not a specialist in Cholangiocarcinoma.
  • Graeme was unaware of the rareness and seriousness of this cancer

3 younger Sisters 

  1. Youngest – Cervical Cancer  No recurrence
  2. Middle – Chrohns – Severe but being managed
  3. Oldest – Breast Cancer – Aggressive – now post 10 years and doing well
I was not alone on this journey!