About this Tool Kit

A Peer to Peer – Patient to Patient checklist of must-do’s to give you a head start. A gift of knowledge, experience, and wisdoms from those who know.

Caregiver Advocate
  1. Choose someone who knows you well and can develop a team around you both.
  2. Caregivers typically create the best patient outcomes.
  3. They are your essential extra eyes and ears that assist and or manage the avalanche of information and its overwhelm.
  4. Caregivers help you share the burden of decision making.
Oncologist – Expertise

Engage an Oncologist that has current experience with Cholangiocarcinoma. A critical observation – “Knowing of’ Cholangiocarcinoma is not the same as having experience with Cholangiocarcinoma – choose wisely.

Oncologist – Clinical Trials

Engage an Oncologist who has current knowledge and willingness to participate in Clinical Trials. Trials offer a vital window on current results.

Oncologist – Personality

Engage an Oncologist that is open-minded and inclusive to your observations, suggestions, and questions.

Hospital Choice

Choose a well-resourced hospital in a major center which is experienced in Gastrointestinal Cancers, Operations, and hosts Clinical trial options.

Primary Origin

Know your primary tumor location, is it Intrahepatic – In the bile duct within the Liver. or is it Extrahepatic – In the bile duct outside the liver. This is important knowledge for the patient and caregiver.

IHC Test

Insist that your Oncologist orders an IHC test if a biopsy is available, or can be obtained. This test discovers important bio-markers MSI-High and or PD-L1 expressions. Both of these markers match current immunotherapy clinical trials for the “Immune checkpoint inhibitor pathway” this will give you more treatment options and potentially better outcomes.
Also view
Immuno 101 for Patients

Molecular Profiling

If an IHC test does not reveal the PD-L1/MSi-H biomarkers, then insist that your Oncologist orders a Molecular Profiling of your biopsy. Molecular Profiling provides a road map on your tumors genetic and genomic makeup, it reveals what is driving tumor growth and matches this to current treatments and trial options. Without this, your Oncologist can only work with historic chemo options and best guesses. Important note – Request the PD-L1/MSi and TMB status be highlighted in the reports notes – you need to insist on this.

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. Asking a dumb/awkward question will set you on a journey that will empower your choices.

Targeted Information

Understand that shared information among peers is very powerful and will improve your choices and outcomes. Targeted information creates new realities from chaos. Sharing can be very difficult, to begin with – you are not the only one, this is not about strong or smart, but it is about being open and willing.

Introduction Kit

A digital introduction pack for Newly Diagnosed Patients and Caregivers – Please click here to view pack

Our goal is to equip every “Newly Diagnosed Patient and Caregiver with this Cancer Tool Kit for Patients.
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Empowering “Newly Diagnosed Patients” with today’s breakthrough information today!

The Globally Connected Patient has become a critical tipping point in realising the cancer cure. A peer to peer patient and caregiver collective, the informational sum of Experiences, Knowledge, Wisdoms, and more importantly realtime treatment results. This is something that the international medical community cannot do.

A modern phenomenon unfolding via the power of targeted social media, unclogging, and delivering “TODAY’S breakthrough results TODAY! – Highly Targeted knowledge delivered into the hands of those most in need -“The Newly Diagnosed Patient and Caregiver”

We sincerely hope that the information on this page leads you and your family back to solid ground and happier outcomes,

Yours Sincerely
Steve and Claire Holmes 
www.steveholmes.net.au