A Centralised Knowledge Hub

By Patients & Caregivers for Patients & Caregivers

A Centralised Knowledge Hub

by Patients and Caregivers for Patients and Caregivers.

Hi there
we are here to help you
This is your patient and caregivers tool kit

Current Survey running

What type of CC were you diagnosed with, and have you achieved NED status.
See results at completion of survey  – estimate 60 seconds to complete this survey
Sharing information helps us all

Jump to Survey
View Intro Pack

Introduction Pack

Connect and Share
View Intro Pack
View the basics

Cholangio 101

View full details
View the basics
View Your Options

Molecular Profiling

Your Road Map
View Your Options
View Your Options

Treatment Options

Curative to Palliative
View Your Options
View Your Options

Immuno 101

View full details
View Your Options

PATIENT TOOL KIT

View your intro pack

Equipping and Empowering every
“Newly Diagnosed Patient” with a
Cancer Tool Kit immediately upon diagnosis.

Expertise:
Engage an Oncologist that is experienced with Cholangiocarcinoma. A critical distinction: Knowing ‘of’ Cholangiocarcinoma is not the same as ‘having experience’ with Cholangiocarcinoma – choose wisely !

Oncologist:
Engage an Oncologist that is open and approachable to your observations, suggestions and questions.

Hospital:
Get treated at a major well resourced hospital that is experienced and current with Cholangiocarcinoma – including treatments and trials options

Primary Origin:
Know your primary tumour, is it Intrahepatic (In the bile duct within the Liver) or Extrahepatic (In the bile duct outside the liver)

MSI /PDL Status:
Ask your Oncologist for ann IHC test to discover MSI-High and or PDL-1 Expression, this is very important before proceeding with any form of treatment program – you may qualify for immunotherapy. Also view Immuno 101 for Patient and Caregivers

Molecular Profile:
Get your tumours biomarkers tested, this Molecular Profiling provides a road map and vision to available treatments and trial options.

Engage & Connect:
Join a Cholangiocarcinoma Group on Facebook, engage with others who are like you. Our groups have considerable patient and caregiver experience and are connected worldwide. 

Remember:
Understand that shared information is powerful it improves outcomes and creates new realities for all of us struggling with Cholangiocarcinoma. Sharing is a two way deal!

Mentors Wanted

We believe the power of the Globally Connected Patient will prove to be a vital link in realising the cure. Together we are the Collective sum of all trials, Experiences, Knowledge and Wisdoms, we see all the results as they unfold. – A new phenomenon only just beginning to be realised. Improving Outcomes and Curing Patients with today’s knowledge TODAY!


Cancer Tool Kit Series

Recent Posts

<

View Shareable Pdf

Pdf Overview

Compiled by The Patient Collective
View Shareable Pdf
View more details

Cholangio 101

Compiled by The Patient Collective
View more details

View PDF

Sharable PDF Version

Designed by The Patient Collective
View PDF
View Full Detalis

Immuno 101

See how it works
View Full Detalis

There are more groups and projects to view including Gallbladder which are also a cancer of the Bile Ducts and classified as a Cholangiocarcinoma

See All Groups – Shareable page
Meet the local Mentors

We are available to help where we can.
Connecting, Sharing, and Asking Questions is a very healthy start

List Building has begun

Cholangiocarcinoma Specific Directory for Australia & New Zealand

Please email claire@cholangiocarcinoma.com.au

We are looking for patient and caregiver recommended

  1. Surgeons
  2. Oncologists
  3. Dieticians
  4. GP’s
  5. Hospitals
  6. Radiography Centres

Other suggestions greatly appreciated

Regards Steve
+61415153522
steve@cholangiocarcinoma.com.au

Do you have a blog?

VIEW PATIENT VIDEOS

Email: steve@cholangiocarcinoma.com.au

  1. Susan Braden | Intrahepatic |USA
  2. Cait Telaak | Intrahepatic | USA | Cait and the Tumor Tim
  3. Steve Holmes | Extrahepatic |Australia |www.steveholmes.net.au
Sharing hope

VIEW PATIENT VIDEOS

If you have achieved NED (No Evidence of Disease) or a Complete Remission please send your story to steve@cholangiocarcinoma.com.au

We will begin populating successful outcomes per category. The purpose is to provide CC Warriors more specific examples and connections relevant to their diagnosis and treatments.

Patients that had
Chemotherapy + Surgery + Immunotherapy and now ‘NED’

Matt Reidy (Keytruda}

Melinda Bachini (Adoptive T Cell Therapy)

Steve Holmes (Keytruda)

Patients that had
Chemotherapy + Immunotherapy only (ie no surgery) and now ‘NED’

Adrienne Skinner

Patients that had
Surgery + Chemotherapy and now ‘NED’

Andrea Sheardown

Mandy Wallace
Mandy’s story coming soon

Patients that had
Surgery only (No other treatment post surgery) and now ‘NED’

Is this you ?

Patients that had a
Liver Transplant with or without Chemotherapy and now ‘NED’
Kara Thornhill Toronto Canada

Is this you ?

We simplify and deliver targeted Information to the Newly Diagnosed Patient and Caregiver. Empowering them with todays potentially life saving information, TODAY!

You are not alone

Hi there we are here to help you. This is your patient and caregivers tool kit

Current Survey running

What type of CC were you diagnosed with, and have you achieved NED status.
See results at completion of survey  – estimate 60 seconds to complete this survey
Sharing information helps us all

Jump to Survey
View Intro Pack

Introduction Pack

Connect and Share
View Intro Pack
View the basics

Cholangio 101

View full details
View the basics
View Your Options

Molecular Profiling

Your Road Map
View Your Options
View Your Options

Treatment Options

Curative to Palliative
View Your Options
View Your Options

Immuno 101

View full details
View Your Options

PATIENT TOOL KIT

View your intro pack

Equipping and Empowering every “Newly Diagnosed Patient”
with a Cancer Tool Kit immediately upon diagnosis.

Expertise:
Engage an Oncologist that is experienced with Cholangiocarcinoma. A critical distinction: Knowing ‘of’ Cholangiocarcinoma is not the same as ‘having experience’ with Cholangiocarcinoma – choose wisely !

Oncologist:
Engage an Oncologist that is open and approachable to your observations, suggestions and questions.

Hospital:
Get treated at a major well resourced hospital that is experienced and current with Cholangiocarcinoma – including treatments and trials options

Primary Origin:
Know your primary tumour, is it Intrahepatic (In the bile duct within the Liver) or Extrahepatic (In the bile duct outside the liver)

MSI /PDL Status:
Ask your Oncologist for an IHC test to discover MSI-High and or PDL-1 Expression, this is very important before proceeding with any form of treatment program – you may qualify for immunotherapy. Also view Immuno 101 for Patient and Caregivers

Molecular Profile:
Get your tumours biomarkers tested, this Molecular Profiling provides a road map and vision to available treatments and trial options.

Engage & Connect:
Join a Cholangiocarcinoma Group on Facebook, engage with others who are like you. Our groups have considerable patient and caregiver experience and are connected worldwide. 

Remember:
Understand that shared information is powerful it improves outcomes and creates new realities for all of us struggling with Cholangiocarcinoma. Sharing is a two way deal!

Mentors Wanted

We believe the power of the Globally Connected Patient will prove to be a vital link in realising the cure. Together we are the Collective sum of all trials, Experiences, Knowledge and Wisdoms, we see all the results as they unfold. – A new phenomenon only just beginning to be realised. Improving Outcomes and Curing Patients with today’s knowledge TODAY!


Cancer Tool Kit Series

Recent Posts

View Shareable Pdf

Pdf Overview

Compiled by The Patient Collective
View Shareable Pdf
View more details

Cholangio 101

Compiled by The Patient Collective
View more details

View PDF

Sharable PDF Version

Designed by The Patient Collective
View PDF
View Full Detalis

Immuno 101

See how it works
View Full Detalis

There are more groups and projects to view including Gallbladder which are also a cancer of the Bile Ducts and classified as a Cholangiocarcinoma

See All Groups – Shareable page
Meet the local Mentors

We are available to help where we can.
Connecting, Sharing, and Asking Questions is a very healthy start

List Building has begun

Cholangiocarcinoma Specific Directory for Australia & New Zealand

Please email claire@cholangiocarcinoma.com.au

We are looking for patient and caregiver recommended

  1. Surgeons
  2. Oncologists
  3. Dieticians
  4. GP’s
  5. Hospitals
  6. Radiography Centres

Other suggestions greatly appreciated

Regards Steve
+61415153522
steve@cholangiocarcinoma.com.au

Do you have a blog?

VIEW PATIENT VIDEOS

Email: steve@cholangiocarcinoma.com.au

  1. Susan Braden | Intrahepatic |USA
  2. Cait Telaak | Intrahepatic | USA | Cait and the Tumor Tim
  3. Steve Holmes | Extrahepatic |Australia |www.steveholmes.net.au
Sharing hope

VIEW PATIENT VIDEOS

If you have achieved NED (No Evidence of Disease) or a Complete Remission please send your story to steve@cholangiocarcinoma.com.au

We will begin populating successful outcomes per category. The purpose is to provide CC Warriors more specific examples and connections relevant to their diagnosis and treatments.

Patients that had
Chemotherapy + Surgery + Immunotherapy and now ‘NED’

Matt Reidy (Keytruda}

Melinda Bachini (Adoptive T Cell Therapy)

Steve Holmes (Keytruda)

Patients that had
Chemotherapy + Immunotherapy only (ie no surgery) and now ‘NED’

Adrienne Skinner

Patients that had
Surgery + Chemotherapy and now ‘NED’

Andrea Sheardown

Mandy Wallace
Mandy’s story coming soon

Patients that had
Surgery only (No other treatment post surgery) and now ‘NED’

Is this you ?

Patients that had a
Liver Transplant with or without Chemotherapy and now ‘NED’
Kara Thornhill Toronto Canada

Is this you ?

We simplify and deliver targeted Information to the Newly Diagnosed Patient and Caregiver. Empowering them with todays potentially life saving information, TODAY!  

Happen on Life

I have always allowed myself to be a little unrealistic often,
it lifts me up and beyond the present moment, transcending me
to a place where my aspirations and dreams can bath in their reality.

Steve Holmes