A Centralised Knowledge Hub
A Centralised Knowledge Hub
by Patients and Caregivers for Patients and Caregivers.
Hi there,
We are here to help support your efforts in achieving the best possible outcomes.
We do this by delivering “Today’s” knowledge, information & wisdom to you “Today.” This is a powerful and tangible gift from your peers – Patients, Caregivers, Advocates, and supporters who have been before you – they/we, want you to succeed.
Please ensure you begin with the Patient Intro Kit, you need to form a basic information foundation before you proceed.
Can you add to this list?
Email: Steve
Ph: +61415153522
FB Messenger
The Globally Connected Patient and Caregiver Collective continue to grow and empower the CCA effort around the globe. A collective of peer-to-peer Knowledge, Experience, and Wisdom.
Current list of communities
- CCA Australia – Steve Holmes
- Cholangiocarcinoma Support NZ – Mandy Wallace
- Cholangiocarcinoma Awareness NZ – Mandy Wallace
- Cholangiocarcinoma Foundation (Foundation – USA)
- Cholangiocarcinoma Warriors (Patients only – USA) – Lisa Craine
- Cholangiocarcinoma immuno & Targeted (USA) – Matt Reidy
- AMMF (UK -Charity) – Helen Morement
- Cholangiocarcinoma Support (UK & Europe)
- The Bili Profect (USA)
- The BileDuct Awareness Group (USA)
- Gallbladder & Bile Duct Support Group (USA)
- Gallbladder & Bile Duct Awareness Group (USA)
- Five for Friday – 5 Ways You Can Support CholangioConnect
- Phase II Study of combination of Trametinib (MEK inhibitor) and Hydroxychloroquine (HCQ) (autophagy inhibitor) in Patients with KRAS Mutation Refractory Bile Tract Carcinoma (BTC)
- NICE approves pemigatinib for those with CCA and the FGFR2 fusion
- Whispers Over My Shoulder
- Five for Friday – 5 Recent News Articles
- Paula Ann Marie Conte
- A Mile or More For AMMF!
- Join AMMF’s Summer 20 Challenge!
- February CCA Awareness Month 2020 – Pets in Purple photo comp!
- AMMF’s Ballot for London Marathon 2020
Meet our local Mentors and Advocates
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
Help build this list?
Specific Directory for Australia & New Zealand Pateints
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
NED (No Evidence of Disease) | Complete Remission
Is this you? Please share your story
steve@cholangiocarcinoma.com.au
Patients that had
Chemotherapy + Surgery + Immunotherapy and now ‘NED’
- Matt Reidy (Keytruda}
- Melinda Bachini (Adoptive T-Cell Therapy + Keytruda)
- Lisa Craine (5 recurrences to NED)
- Steve Holmes (Keytruda)
Patients that had
Chemotherapy + Immunotherapy only (ie no surgery) and now ‘NED’
Patients that had
Surgery + Chemotherapy and now ‘NED’
- Andrea Sheardown
- Mandy Wallace (Mandy’s story coming soon)
Patients that had a
Liver Transplant with or without Chemotherapy and now ‘NED’
- Kara Thornhill Toronto Canada
Patients that had
Surgery only (No other treatment post-surgery) and now ‘NED’
Is this you? please contact Steve
“Anything and Everything is possible, as long as I remain open to it. It allows my willingness to rise up from deep within, a bright beacon for opportunity and luck to find their way to me.”
Steve Holmes