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
Recent Posts
A future look into Immuno-Oncology
what a line up! 2018 Nobel Prize winner James P. …
1DH1 and TIBSOVO® (ivosidenib)
Phase 3 trial sees significant benefit as end point is …
Blood Biopsies increasing MSI-high detection
A barrier to improved outcomes for many patients is the …
Ariella Chivil, Cancer Patient success – immunotherapy
Ariella Chivil, an Immunotherapy Advocate, shares her story of self-advocacy …
Cholangiocarcinoma beyond the Blockade
Breakthroughs, Options and Opportunities opening up beyond the Check point …
Mandy Wallace – NED Cholangiocarcinoma Patient
NED 7.5 years - I woke up on the morning …
Cholangiocarcinoma and FGFR2
FGF and FGFR2 is a signalling pathway - Fibroblast growth …
Gem/Cis gets nab-paclitaxel
So, knowing I had no clinical trials for them motivated …
Scanxiety a new challenge and a special thank you
A Contradiction - It has been what seems like a …
Steve Holmes – Patient
It’s a bloody big challenge of both the mind and …
Live RSS Feed
- PROOF Trial: Phase 3 Study of BGJ398 (Oral Infigratinib) in First Line Cholangiocarcinoma With FGFR2 Gene Fusions/Translocations
- Michelle’s Hot Peeps Beat CC
- Repurposing Drugs for Cholangiocarcinoma
- Cholangiocarcinoma Foundation Awards $365k in Research Fellowship Grants in Largest Funding Cycle to Date
- The Cancerbet – or What Cancer Does and Does NOT do – from A to Z
- AMMF’s Summer of ‘Fun’-draising ideas!
- AMMF’s Summer of ‘Fun’-raising ideas!
- AMMF’S New ‘Summer Snaps’ Photo Competition
- The ABC-06 study – first results out …
- AMMF’s Amazing April!
PATIENT TOOL KIT
Equipping and Empowering every
“Newly Diagnosed Patient” with a
Cancer Tool Kit immediately upon diagnosis.
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!
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!
“The Patient Collective”
Cancer Tool Kit Series
<
Meet the local Mentors
We are available to help where we can.
Connecting, Sharing, and Asking Questions is a very healthy start
- Ask a question in our Facebook Group
- Patient help; Steve Holmes | Australia | Extrahepatic | Whipple | Chemo | Immuno
Email steve@cholangiocarcinoma.com.au
Facebook & Messenger link - Patient help; Mandy Wallace | New Zealand | Intrahepatic | Liver Resection |Chemotherapy
Email moo1426@xtra.co.nz
Facebook and Messenger link - Caregiver help – Claire Holmes | Australia | Steve’s Wife
Email claire@cholangiocarcinoma.com.au
Facebook & Messenger link
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
- Surgeons
- Oncologists
- Dieticians
- GP’s
- Hospitals
- Radiography Centres
Other suggestions greatly appreciated
Regards Steve
+61415153522
steve@cholangiocarcinoma.com.au
Do you have a blog?
Email: steve@cholangiocarcinoma.com.au
- Susan Braden | Intrahepatic |USA
- Cait Telaak | Intrahepatic | USA | Cait and the Tumor Tim
- Steve Holmes | Extrahepatic |Australia |www.steveholmes.net.au
Sharing hope
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’
Patients that had
Surgery + Chemotherapy and now ‘NED’
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 ?
Can you suggest a great nutrition video to add?
email the link to steve@cholangiocarcinoma.com.au
We simplify and deliver targeted Information to the Newly Diagnosed Patient and Caregiver. Empowering them with todays potentially life saving information, TODAY!
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
Recent Posts
A future look into Immuno-Oncology
what a line up! 2018 Nobel Prize winner James P. …1DH1 and TIBSOVO® (ivosidenib)
Phase 3 trial sees significant benefit as end point is …Blood Biopsies increasing MSI-high detection
A barrier to improved outcomes for many patients is the …Ariella Chivil, Cancer Patient success – immunotherapy
Ariella Chivil, an Immunotherapy Advocate, shares her story of self-advocacy …Cholangiocarcinoma beyond the Blockade
Breakthroughs, Options and Opportunities opening up beyond the Check point …Mandy Wallace – NED Cholangiocarcinoma Patient
NED 7.5 years - I woke up on the morning …Cholangiocarcinoma and FGFR2
FGF and FGFR2 is a signalling pathway - Fibroblast growth …Gem/Cis gets nab-paclitaxel
So, knowing I had no clinical trials for them motivated …Scanxiety a new challenge and a special thank you
A Contradiction - It has been what seems like a …Steve Holmes – Patient
It’s a bloody big challenge of both the mind and …
Live RSS Feed
- PROOF Trial: Phase 3 Study of BGJ398 (Oral Infigratinib) in First Line Cholangiocarcinoma With FGFR2 Gene Fusions/Translocations
- Michelle’s Hot Peeps Beat CC
- Repurposing Drugs for Cholangiocarcinoma
- Cholangiocarcinoma Foundation Awards $365k in Research Fellowship Grants in Largest Funding Cycle to Date
- The Cancerbet – or What Cancer Does and Does NOT do – from A to Z
- AMMF’s Summer of ‘Fun’-draising ideas!
- AMMF’s Summer of ‘Fun’-raising ideas!
- AMMF’S New ‘Summer Snaps’ Photo Competition
- The ABC-06 study – first results out …
- AMMF’s Amazing April!
PATIENT TOOL KIT
Equipping and Empowering every “Newly Diagnosed Patient”
with a Cancer Tool Kit immediately upon diagnosis.
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!
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!
“The Patient Collective”
Cancer Tool Kit Series
Meet the local Mentors
We are available to help where we can.
Connecting, Sharing, and Asking Questions is a very healthy start
- Ask a question in our Facebook Group
- Patient help; Steve Holmes | Australia | Extrahepatic | Whipple | Chemo | Immuno
Email steve@cholangiocarcinoma.com.au
Facebook & Messenger link - Patient help; Mandy Wallace | New Zealand | Intrahepatic | Liver Resection |Chemotherapy
Email moo1426@xtra.co.nz
Facebook and Messenger link - Caregiver help – Claire Holmes | Australia | Steve’s Wife
Email claire@cholangiocarcinoma.com.au
Facebook & Messenger link
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
- Surgeons
- Oncologists
- Dieticians
- GP’s
- Hospitals
- Radiography Centres
Other suggestions greatly appreciated
Regards Steve
+61415153522
steve@cholangiocarcinoma.com.au
Do you have a blog?
Email: steve@cholangiocarcinoma.com.au
- Susan Braden | Intrahepatic |USA
- Cait Telaak | Intrahepatic | USA | Cait and the Tumor Tim
- Steve Holmes | Extrahepatic |Australia |www.steveholmes.net.au
Sharing hope
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’
Patients that had
Surgery + Chemotherapy and now ‘NED’
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 ?
Can you suggest a great nutrition video to add?
email the link to steve@cholangiocarcinoma.com.au
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