CCA – Cholangiocarcinoma
If you are a newly diagnosed patient your best starting point is the CCA Patient ToolKit
Best Cholangiocarcinoma Patient and Caregiver resources
Along with Pancreatic, Cholangiocarcinoma – (CCA) is the most hostile of all cancers, with no curative outcome or early detection advantage. Primarily a Cholangiocarcinoma (Bile Duct Cancer) is an adenocarcinoma that is a tumor growth that originates within the body’s epithelial tissue (skin) layer around all our organs. This skin layer has a mucus-secreting layer of glands that line and protect our vital organs and this provides the cancer to move mostly undetected.
CCA invades many connected organs via the bile ducts, it does so completely undetected with stealth and speed, and typically goes undetected until a stage 4 outcome. Impacted organs –
- Lymph Nodes
- Also, the Spine and Brain can be impacted
Survival – Outlook
Highlighted in red is my specific diagnosis
- 5 yr Survival = less than 8 %
- 5 yr Metastatic Survival = less than 1%
- Average survival period: Extrahepatic = 6.7 months
- Average survival period: Intrahepatic = 13.2 months
- Overall average survival period is improving slowly but still sub 12 months.
Cholangio is an undefeated Cancer Beast
Currently, Merck leads the charge to defeat this beast, and also thankfully other drug companies are fast becoming more relevant in dealing with the many mutation variants that occur in cancer.
The race to conquer cancer
Cancer treatments are now about highly targeted and specific treatment of your specific cancer mutation. Most cancers have subsets defined by their mutation. ie bowel cancer patients can no longer just be identified as ‘Bowel” they must also be identified by which mutation type is driving the cells to become cancerous – it’s these mutations that immunotherapy intervenes in.
Phase one trial was completed with one patient success outcome, Phase two trial is ongoing (now in yr 5)
I am in the Phase two trial – one of 9 – I was the only full response. Below I have also included two other outliers – Matt and Melinda.
- 2015: Phase One Trial – Keynote trial 028. This trial produced the first-ever full NED patient response – Rose -USA – in her 70’s.
- 2015: Matt Reidy, off-trial, privately treated with Keytruda succeeded – NED ongoing.
- 2016: Melinda Bacchinni who had limited success on TIL regimes, switched to Keytruda and had immediate success becoming NED.
- 2017: Phase Two trial initiated: ie Keynote 158
- 2017 -18: ICI -Immune Checkpoint Inhibitors recognized success in treating Melanoma, Lymphoma, and Lung cancer patients. These 3 cancer cohorts qualify as first-line treatments
Success is not guaranteed, but the words cure and cancer are now being referred to in the same sentence as immunotherapy.
Within the CCA patient world, 4 patients, have now joined the 1% of the 1% across all cancer cohorts.