Patient Toolkit


We give ‘Hope’ a plan.
A roadmap to best outcomes from Day One.

We give ‘Hope’ a plan. A roadmap to best outcomes from Day One.

EDUCATE – EQUIP – EMPOWER

Peer to peer – Patient to patient
Highly targeted knowledge, experience, and wisdom for the newly diagnosed patient.

Priority Checklist and Must-do’s
For Patients with Solid Tumor Cancers
(not intended for blood cancers)

Toolkit Content
A collective of knowledge, experience, and wisdom distilled from the globally connected patient and caregiver communities. Vital information from those who have successfully navigated their way back to good health.

Successful patients share common traits and decisions.
Mastering the following topics (in priority order) has led them to the best outcomes.

  1. Caregiver
  2. Choose a Surgeon
  3. Choose an Oncologist
  4. Choose a Hospital
  5. know your Primary Tumor
  6. IHC testing
  7. Molecular Profiling
  8. Clinical Trial Eligibility
  9. Peer Group Communication
  10. Ask Questions

Note: re Molecular Profiling of a biopsy (by a Laboratory)
This is also described as –

  • Genomic Testing
  • Biomarker Testing
  • Tumour Testing
  • Genetic Sequencing

Terminologies and words
Unfortunately, there are many terms, words, and descriptions within the medical profession to describe the exact same thing. This is confusing initially. The beginning example is “Bile Duct Cancer” is Cholangiocarcinoma. Also Klatskin and hilar (perihilar) are the same, Klatskin being the outdated description. As you will have observed above molecular & genomic profiling or sequencing are essentially the same thing.

Caregivers are an essential factor in successful cancer outcomes.
Characteristics to consider when choosing a caregiver.

  • Good Listener
    Good listeners lighten the load and ease the stress.
    Choose someone who can listen to you without judgment, someone who understands you well.

  • Good Environment
    Building environments that heal is not easy alone.
    Choose someone who can ask you questions and help you build an open and willing environment around the challenge ahead. This takes time but will help immensely.

  • Team builder
    This is not about how tough or determined – share the load and its burden.
    Choose someone who knows you well, and can develop a team around both of you.

  • Support Role
    You will need an extra set of eyes and ears as well as physical support.
    Choose a person who can help you manage the avalanches of information, appointments, and overwhelm, someone who can drive and support you physically when needed.

  • Advocate
    Caregivers can enlist the help of others who can advocate for both of you.
    Choose a caregiver who you are comfortable with speaking on your behalf when you cannot.
    Most patients find advocating for themselves very difficult and often do not ask all the questions or articulate what needs to be said.

  • Decision making
    Foundation for good decision making.
    Choose a person that can help you organize questions, simplify choices, and generally build a good foundation to make decisions.

Surgeons specialise in specific cancers – Find your match.
Characteristics to consider when choosing a surgeon that best fits your exact diagnosis.

  • Expertise
    Current in Knowledge and Experience with your exact tumor type.
    It is very important at they have current experience with many patients & a current knowledge of Cholangiocarcinoma. This is an important distinction and will impact outcomes.
    Choose a Surgeon who ticks these boxes, this is a critical component of patient success.

  • Clinical Trials
    Clinical Trials offer a vital window into current treatment results.
    Successful trial results often take years to move through the traditional clogged medical communication channels.
    Choose an Oncologist who is current with and or willing to include Clinical Trials as part of your treatment plans.

  • Personality
    Good communication and dialogue skills matter, they foster the best outcomes.
    Choose a Surgeon who is open-minded and willing to include your observations, suggestions, and questions.
    Do not allow yourself to become just a number.

  • Second & Third Opinions
    The fear of being disloyal holds patients back from seeking another opinion.
    Successful Cancer Patients share a common trait, they seek second or third opinions.
    Good Surgeons are comfortable with this and will support your initiative.

  • Important
    When it comes to treating Cholangiocarcinoma, specific expertise can mean the difference between life and death.

Oncologists specialize in specific cancers – Find your match.
Characteristics to consider when choosing an Oncologist that best fits your exact diagnosis.

  • Expertise
    Current in Knowledge and Experience with your exact tumor type.
    Knowing of the cancer type is not the same as having current experience & knowledge of it. This is an important distinction and will impact outcomes.
    Choose an Oncologist who ticks these boxes, this is a critical component of patient success.

  • Clinical Trials
    Clinical Trials offer a vital window into current treatment results.
    Successful trial results often take years to move through the traditional clogged medical communication channels.
    Choose an Oncologist who is current with and or willing to include Clinical Trials as part of your treatment plans.

  • Personality
    Good communication and dialogue skills matter, they foster the best outcomes.
    Choose an Oncologist who is open-minded and willing to include your observations, suggestions, and questions.
    Do not allow yourself to become just a number.

  • Second & Third Opinions
    The fear of being disloyal holds patients back from seeking another opinion.
    Successful Cancer Patients share a common trait, they seek second or third opinions.
    Good Oncologists are comfortable with this and will support your initiative.

  • Important
    When it comes to treating Cholangiocarcinoma, specific expertise can mean the difference between life and death.

Often the best Hospitals are frequented by the best Oncologists.
Characteristics to consider when choosing a Hospital

  • Major Center Hospital
    City Center Hospitals consistently provide the best resources and results.
    Choose a City or major center hospital with modern medical technology.
    If you cannot access a major city or center, then choose a hospital that is aligned to one.

  • Cancer-Specific Hospital
    Specialist Cancer Hospitals are equipped with  the best resources
    Hospitals are not all equal – try to choose a hospital that has a substantial cancer resource and has a reputation around this.

  • Clinical Trials
    Does this hospital conduct clinical trials for cancer?
    Choose a hospital that is a current host to Clinical Trials for Cancer. This will expose you to more choices.

Knowledge empowers choices and improves outcomes.
It all begins with an open mind and a willingness to learn what you do not know.

  • Know the Exact Location
    Knowing the location of your primary tumor will empower your decision-making.
    Cancers are ultimately defined by their exact primary location, for example – cancers can be upper, lower, Intra, Extra & more.

  • Location influences treatments
    The exact location of the primary tumor influences your treatment options and choices.
    This may appear to be something insignificant, please take the next step and gain back some control – ask your Oncologist.

  • Specific Type
    Ask your Oncologist to describe the exact sub-type.
    Tumors differ within the same cancer cohort, knowing what sub-type is important. This knowledge will help filter out unnecessary noise and allow you to focus on what is the most relevant to your specific tumor type.

An IHC test of your biopsy is a priority one task for your Oncologist
Ensure that your Surgeon & or Oncologist requests this simple test immediately after your biopsy is obtained.  This discovers if your tumor markers (mutations) are aligned to current immunotherapy treatment options.

Please Note: IHC Testing and Molecular Profiling have approximately 93% correlation in results for PD-L1 and MSi-high.

  • IHC = Immunohistochemistry 
    A test often overlooked and underestimated by Oncologists
    The IHC Test is simple cost and time-efficient tissue staining test, which takes 3 – 5 days at around $500.
    It requires a biopsy that is obtained from the primary tumor during surgery, or by other investigative methods, if surgery is not an option.

  • Biomarkers
    IHC is searching for evidence of biomarkers known to match successful immunotherapy treatments.    PD-L1, HER2, MSI-High, and others indicate that you may be a match to current immunotherapy treatments. For example; the presence of PD-L1 highlights that Immune Checkpoint Immunotherapy may be a strong option. Knowing this information will increase your treatment choices. There are other biomarker matches that depend on the type of primary cancer.

  • Immune Checkpoint Pathway
    As a patient, you need to know if your tumor biomarkers are a match before committing to treatment options.
    When a T-Cells Pd-1 ‘Checkpoint ligand’ binds with a cell that has a matching ‘PD-L1′ Receptor ligand, it deactivates the immune response. Cancer has learned to express PD-L1 Receptors on their cell surface to evade the immune response. Immunotherapy treatments called “Immune checkpoint inhibitors” (ICI) have been developed to block this binding. This is what is commonly described as a blockade or releasing the brakes so that T-Cells can continue on and eliminate the cancerous tumor.

  • Immuno 101
    Also view Immuno 101 for Patients

Other terminologies; Genomic, Sequencing.

Science fact is saving lives
If you are unable to obtain a biopsy of  your solid tumor consider a “Blood Biopsy.” Blood, biopsies are constantly improving in scope and consistency of results.

  • Insist on a Molecular Profile
    A Roadmap and a torch to shine a light on what is happening.
    If your IHC test does not reveal biomarkers that match a current clinical trial,     then insist that your Oncologist orders Molecular Profiling of your biopsy, this takes between 4 to 6 weeks and is a more costly exercise.
    Special Note. Ensure that your Oncologists request the PD-L1/MSi and TMB results are highlighted in the reports notes. You will need to insist on this. Without a Molecular Profile, your Oncologist will not know what is driving the tumor growth and can only apply historic Chemotherapy /Radiation treatment options and best guesses. 

  • What is driving tumor growth
    Focus on exactly what is driving tumor growth.
    Molecular Profiling is complex and thorough in examining both your tumors genetic and genomic makeup. It will reveal the mutations (abnormalities) that is causing otherwise healthy cells to become cancerous.

  • Molecular Profiling discovers mutations
    The future of cancer treatment is to discover & target the exact mutations on (or within) the cancer cells, no matter where the cancer is located.
    Cancer treatment has evolved substantially through immunotherapies that can now target the exact mutation. Historically chemotherapy and radiation have been the only tools for Oncologists. Think of Chemotherapy as a general all-purpose weed control dampening down the weeds, and immunotherapy as a highly targeted killer that eliminates its target. Immunotherapy is providing genuine medical breakthroughs at a level not seen since the discovery of penicillin in 1928.

  • Genomic Testing
    View Molecular and Genomi Testing

Are you a candidate for a clinical trial”

This is a vital factor that your oncologist should investigate as soon as you receive your diagnosis.

Cholangiocarcinoma has limited treatment options. New tests and treatments are being developed at a record pace, but many are not yet available to the public or not offered as a “First-line” treatment option. These new tests and treatments are sometimes offered to patients within a strict controlled clinical trial study.

Clinical trials offer patients the opportunity to become involved in treatments that may well become tomorrow’s standard of care. It is important that your Oncologists are conversant/aware of current trial options.

For Cholangiocarcinoma patients in Australia, there are limited Clinical Trial options, but that should not dissuade you from researching all possibilities. Included below are 2 Australian search options, and the Cholangiocarcinoma Foundation (USA) options. We provide this information here to ensure you gain a full overview of the current options regardless of where they originate or are currently located.

Clinical trials will require that you have the biomarkers that align to specific trial requirements hence the importance of obtaining a biopsy (tissue sample of the tumour) and having it tested, in the first instance a simple IHC test (3-5days) and inexpensive and thereafter a full molecular (Genomic) profile.

For Cholangiocarcinoma patients it would be a significant mistake to assume that your surgeon or Oncologist will automatically engage an IHC (Staining test) on your behalf. You will need to ensure or ask that this be completed.

Trial Options

Join a Group of your peers

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. Everyone begins with not knowing what they do not know, this is a very scary starting position but it is essential for you to remember we all start from this same position. The key point is to ask any question no matter how basic or awkward it may seem, introduce yourself and ask any question to get started… this will set you on a journey that will empower your choices.

Open and willing communication
It is all-important to create a communication foundation that allows you to express and also to learn

  • Private Facebook Communities.
    Facebook groups provide considerable leverage with their dedicated focus. “Many hands” are making breakthroughs.
    Groups are both local and global with members just like you. Many are part of cancer organizations that focus and fund research on your exact cancer. Private Facebook Groups are Private and respectful, with rules of membership. Groups are often formed separately for the patient and caregiver to ensure transparency and full engagement.

  • Join, share and Learn
    Facebook Groups are very resource and experience-rich and will educate you on what to read and research.
    Groups and their members will help you screen out avalanches of irrelevant information that can overwhelm you.
    Member discussions highlight what is working today.

  • Facebook Groups provide a window on what is working today.
    The medical communities information channels are clogged and move very slowly.
    Highly focused Facebook groups share results and upcoming treatment options, they have considerable global patient and caregiver connections and experience. Think of these groups as real-time in terms of results and new options that you and your oncologist will not be aware of.

Ask good questions

We have assembled a list to give you a head start

Download List

Terms used in the order of appearance
Note: The medical community language and description are not always in sync. Different names and terms are used. This is confusing to the patient and caregiver, we try our best to overcome this.

Caregiver
The person who helps you function on an everyday basis

Advocate
People who can speak up, advance the patient and caregiver questions, and generally support the effort. Often patients and their Caregivers have several advocates who have different skills

 Clinical Trial
Clinical trials are a type of research that studies new tests and treatments and evaluates their effects on human health outcomes.

Tumor
 Tumors are a mass of tissue that’s formed by an accumulation of abnormal cells. Normally, the cells in your body age, die, and are replaced by new cells. With cancer and other tumors, something disrupts this cycle.

Primary Tumor
This is the original tumor location

Biopsy
This is a tissue sample that is obtained from the actual tumor.

Immunohistochemical – IHC 
A test that stains the biopsy sample with a chemical solution to highlight the presence of known biomarkers.

Biomarkers
A biological molecule found in blood, other body fluids, or tissues that is a sign of a normal or abnormal process, or of a condition or disease. A biomarker may be used to see how well the body responds to a treatment for a disease or condition.

Immune Checkpoint
The Immune Systems killer T Cell has a failsafe switch to turn off any accidental attack on a healthy cell. Cancer has learned how to turn off this switch and continue growing.

Immune Checkpoint pathway
The Immune Checkpoint pathway refers to the interaction between the killer T Cells and the surface of a normal cell. The T Cell has a PD-1 ligand on its surface and a healthy cell has a PD-L1 ligand on its surface (a matching pair), when these two meet and interact it turns off the unwanted T Cell attack – Cancer has learned to hide behind this by expressing PD-L1 when a T Cell approaches.

Immune Checkpoint Inhibitor -ICI
This is an immunotherapy drug – a monoclonal antibody designed in a laboratory that interferes with the T Cell’s “Checkpoint Switch” by locking in the “On” position, so the T Cell can continue and illuminate the cancerous tumor. 

Keytruda
Keytruda is a monoclonal antibody created in a laboratory and infused into the patient.  Keytruda is not a chemotherapy treatment.

Monoclonal Antibodies
Monoclonal – means they are designed to perform a single purpose or task.

  1. Monoclonal antibodies are made in a laboratory and are used to block the activity of abnormal proteins detected on infected cells. They are often designed to attach themselves to protein receptors on the surface of cells infected by viruses, essentially acting as a broadcasting beacon /marker that alerts our immune system to attack.
  2. Monoclonal antibodies have also been developed to be used as an immunotherapy and help turn the immune system against a cancerous cell. For example, some monoclonal antibodies mark cancer cells so that the immune system will better recognize and destroy them, while others such as Keytruda act as a blocking mechanism. See the video section.

Immunotherapy
Think of immunotherapy drugs as specially designed actions that interfere with what is driving the tumor growth. A lot like a computer has code that goes wrong and a new “patch’ or string of code has to be added as a workaround. Immunotherapy is being referred to as the first ever cancer cure – a modern-day penicillin moment in history.

Monoclonal
Simply this is an antibody designed in the laboratory to perform one single function/purpose.

Molecular Profile
This is a comprehensive examination of a biopsy sample. It examines the genetic and genomic makeup of the sample provided. 

Genetic
Genetics is a term that refers to the study of genes and their roles in inheritance – in other words, the way that certain traits or conditions are passed down from one generation to another. Genetics involves scientific studies of genes and their effects. Genes (units of heredity) carry the instructions for making proteins, which direct the activities of cells and functions of the body. Examples of genetic or inherited disorders include cystic fibrosis

Genomic
Genomics is a more recent term that describes the study of all of a person’s genes (the genome), including interactions of those genes with each other and with the person’s environment. Genomics includes the scientific study of complex diseases such as cancer because these diseases are typically caused more by a combination of genetic and environmental factors than by individual genes. Genomics is offering new possibilities for therapies and treatments for some complex diseases, as well as new diagnostic methods.

Videos

Genetic -Genomics explained

The advantages of an IHC – Immunohistochemistry test

Cancer explained

Molecular Profiling

How Keytruda works

Keytruda, combinations and side effects

Catergories of Cancer

APC
Antigen Presenting Cells: The immunes messengers.

B Cells
B Cells have 2 primary functions (1) Produce the ‘antibodies’ and (2) Produce memory cells for any future threats.

CTLA-4
A Check Point protein that sits on the surface of the T Cells. They prevent mistake attacks on healthy cells.

Car T Cells
A new innovating immunotherapy technique

IHC 
Immunohistochemistry test chemically stain the tissue biopsy looking for a response that indicates the presence of PD-L1, MSi, HER2 that are known match’s for current Immunotherapy treatments.

Ligand
An elongated strand of protein receptor that anchors to a cell surface. (ie PD-L1 is a Ligand receptor)

Molecular Profiling
Provides a DNA road map of the tumors fingerprint (Genomic) and your hereditary fingerprint (Genetic)

Microsatellites
Microsatellites are stretches of DNA that contain a repetitive sequence of nucleotides

Nucleotides
Nucleotides are the repetitive strings of DNA code that make us – us. example of a code  string;  “AAAAA or CGCGCGCG”  (codes are short tandem sequences that replicate)

MSI
Is a measure of Microsatellite Instability

MSI-LOW
Is a low recorded measure of Microsatellite Instability.

MSI-HIGH
Is a high recorded measure of Microsatellite Instability.

MSS
Is  Microsatellite Stable, which means no instability is present

MMR
Mismatch Repair is the DNA repair pathway that plays a key role in maintaining our genomic stability. MMR is our “Spell Checker” correcting any errors in our DNA replication process as they occur.

MMR
Is made up of 4 proteins (MLH1, MSH2, MSH6, & PMS2 )
Think of MMR as our bodies DNA Spell Checker – DNA replication often goes wrong and the MMR genes correct this.

dMMR
Deficient Mismatch Repair means that one or more of the 4 MMR proteins absent and as a result, the MMR is not functioning correctly and is described as deficient
Think of dMMR as our bodies DNA Spell Checker that has become broken and as such is letting DNA replication mistakes continue unchecked.

TMB
Means Tumour Mutation Burden
High TMB is gathering attention as a biomarker indicator that immunotherapy treatments could prove successful.

PD-L1
means Programmed Death Ligand 1 – a cluster protein that generally coats and protects healthy cells from the immune systems T Cells

PD1
Is an Immune Check Point Inhibitor – its function is to switch off a T Cell attack. It does by binding and communicating with the PD-L1 anchored to a cell surface.

PD-1/ PD-L1 Pathway
A communication pathway/channel that dampens or deactivates (switches off) an immune response – (T Cell attack) on healthy cells.

HER2
Is a growth receptor gene often found on the surface of breast cancers cells – too many receptors cause cells to grow and divide too quickly, Immunotherapy treatments have shown positive results in blocking this growth pathway.

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, Wisdom, and more importantly real-time 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

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