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
- Choose someone who knows you well and can develop a team around you both.
- Caregivers typically create the best patient outcomes.
- They are your essential extra eyes and ears that assist and or manage the avalanche of information and its overwhelm.
- 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.
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.
CAN YOU HELP US ACHIEVE THIS? Please share
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
Immunohistochemical
Which test is best for MSI and PD-L1 testing
IHC – Immunohistochemical or “Molecular Profiling”
Both work about the same in terms of results but –
- IHC: Fast 3-5 day turnaround versus Molecular Profiling (4-6 weeks) This allows for quicker treatment response.
- IHC and Molecular Profiling results agree 92% of the time
- IHC is inexpensive at approx $500.00 versus Molecular Profiling – $5,000 to $10,000
- View more on our testing page
Search for Clinical Trials
Important: Also search USA – clinicaltrials.gov
What are MSi-high /dMMR Cancers
In normal cells, a system called DNA mismatch repair (MMR) corrects errors that occur during DNA replication. Defects in MMR can lead to microsatellite instability-high (MSI‑H), which can be found in many types of cancer. MSI‑H or mismatch repair deficient (dMMR) tumors have accumulation of errors in genetic sequences that are normally repeated (called microsatellites)
HOW A TEST FOR MSI‑H/dMMR WORKS
Important View Immuno 101
Everyone’s cancer is different. To help develop a treatment plan that’s right for you, your doctor may order laboratory tests. These tests can evaluate your tumor for different biomarkers, including MSI‑H or dMMR. Some biomarkers are used to help select patients that may benefit from certain treatments, such as KEYTRUDA. Talk to your doctor to see if a laboratory test for the MSI‑H or dMMR biomarker is right for you.
- A tissue sample (biopsy) of your tumor is taken, and your doctor orders the test.
- Your doctor typically gets the results in 10 to 14 days.
- You talk with your doctor to discuss treatment options based on your results.
- You may begin treatment with KEYTRUDA if you and your doctor have decided it’s right for you.
What are PD-1 and PD-L1 biomarkers
CANCER CELLS MAY USE THE PD-1 PATHWAY TO HIDE FROM T CELLS
Important View Immuno 101
The immune system is your body’s natural defense against disease. The immune system sends certain types of cells called T cells throughout your body to detect and fight infections and diseases—including cancer.
Cancer cells may use the PD-1 pathway to hide from T cells. This stops T cells from attacking cancer cells and allowing cancer cells to grow and spread.
PD‑1 = programmed death receptor-1
PD-1 and PD-L1 are types of proteins found on cells in your body. PD‑1 protein is found on immune cells called T cells. It normally acts as a type of “off switch” that helps keep the T cells from attacking other cells in the body. PD-1 attaches to PD‑L1, a protein found on some normal (and cancer) cells. This interaction basically tells the T cell to leave the other cell alone and not attack it. Some cancer cells have large amounts of PD‑L1, which helps them hide from immune attack.
Therapies that target either PD-1 or PD-L1 can stop them from attaching and help keep cancer cells from hiding.
Learn more about KEYTRUDA, a type of immunotherapy that works by blocking the PD‑1 pathway.
KEYTRUDA can cause your immune system to attack normal organs and tissues in any area of your body and can affect the way they work. These problems can sometimes become severe or life-threatening and can lead to death. These problems may happen anytime during treatment or even after your treatment has ended.
Information Source: https://www.keytruda.com/how-does-keytruda-work/
Primary Location matters
The primary origin of the tumor will define.
Every Cholangiocarcinoma diagnosis has an origin location, this is referred to as your Primary Tumour.
There are two general primary locations.
- Intrahepatic CC – Primary within the bile ducts and within the Liver
- Extrahepatic CC – Primary within the bile ducts outside the Liver
The Extrahepatic Primary is further defined as per the diagram below.
- Perihilar Extrahepatic Primary is located in the Hilum/Common Hepatic Duct region – just under the liver adjacent to the Gallbladder
- Distal Extrahepatic Primary is located in the Common Bile Duct – just below the junction to the gallbladder and extends down to the Duodenum
