PATIENT PERSPECTIVE

CHOLANGIOCARCINOMA AUSTRALASIA
PATIENT| RESEARCH | TRIALS| TREATMENT | SURGERY

Melinda Bachini

Foreword

Melinda was diagnosed in 2009 she has continued to step up and beyond to share her journey and  inspire others to keep “Trying”. This is a very good example of the will the effort and discovering what can be done next when there seems little if not nothing available –  Melinda is a Patient who went onto an Adoptive Cell Therapy and more. We all benefit from meeting and sharing with our fellow Crusaders – I hope you can gain something from Melinda’s words. 

We are constantly refining what we do to align with the patient and Caregiver, please take a moment to give us feed back in the CCA Mission (drop down) 
Regards
Steve
www.steveholmes.net.au

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2016

2019

CCF Annual Conference

BIO

Melinda Bachini is an 8-year survivor of cholangiocarcinoma, was diagnosed in 2009 with Stage IV intrahepatic cholangiocarcinoma. Her treatments have included: Liver resection, chemotherapy, clinical trial with Adoptive Cell Therapy, and pembrolizumab.

Melinda is married and the mother of six children, is passionate about patient advocacy. Her personal experience with the previous and current treatments allows for great insight to patients participating in clinical trials. Her function as moderator of the cholangiocarcinoma discussion board, allows Melinda to interact, support and educate others touched by this cancer. She shares her story with as many cancer patients as possible in hopes of giving courage to those in need. Melinda worked for twenty years in the Emergency Medical Field as an EMT, paramedic and field supervisor.

She has completed the Focus on Research program through Research Advocacy Network, ASCO patient advocacy training and Rare Disease Legislative Advocate webinar training through Every Life Foundation for Rare Diseases. Melinda attended Rare Disease Week on Capitol Hill 2016 representing cholangiocarcinoma patients, where she advocated for the 21st Century Cures Act. Melinda has been appointed patient advocate for the NCI Hepatobiliary Task Force which allows participation in the NCI Patient Advocate Steering Committee (PASC). Melinda attended the NCCS, CPAT Symposium and advocated on Capitol Hill. She attended the NCCN Policy Summit: Value Tools for Patients in Cancer Care. In January, she participated as a panelist in the Cancer Moonshot – Community Oncology Event at the White House, told her personal story and was introduced by her state Senator for the Innovation and Access in Quality Cancer Care at the US Capitol. She attended the AAADV Fundamentals Workshop, and most recently spoke with nine US Senators at NIH to share her personal story

Half the Liver 

2009: A Large Tumour

Advocacy Coordinator, Billings, Montana

Melinda Bachini is an 8-year survivor of cholangiocarcinoma, was diagnosed in 2009 with Stage IV intrahepatic cholangiocarcinoma.  Her treatments have included:  Liver resection, chemotherapy, clinical trial with Adoptive Cell Therapy, and pembrolizumab.

Melinda is married and the mother of six children, is passionate about patient advocacy. Her personal experience with the previous and current treatments allows for great insight to patients participating in clinical trials.  Her function as moderator of the cholangiocarcinoma discussion board, allows Melinda to interact, support and educate others touched by this cancer.  She shares her story with as many cancer patients as possible in hopes of giving courage to those in need. Melinda worked for twenty years in the Emergency Medical Field as an EMT, paramedic and field supervisor.

She has completed the Focus on Research program through Research Advocacy Network, ASCO patient advocacy training and Rare Disease Legislative Advocate webinar training through Every Life Foundation for Rare Diseases. Melinda attended Rare Disease Week on Capitol Hill 2016 representing cholangiocarcinoma patients, where she advocated for the 21st Century Cures Act. Melinda has been appointed patient advocate for the NCI Hepatobiliary Task Force which allows participation in the NCI Patient Advocate Steering Committee (PASC).  Melinda attended the NCCS, CPAT Symposium and advocated on Capitol Hill. She attended the NCCN Policy Summit: Value Tools for Patients in Cancer Care. In January, she participated as a panelist in the Cancer Moonshot – Community Oncology Event at the White House, told her personal story and was introduced by her state Senator for the Innovation and Access in Quality Cancer Care at the US Capitol. She attended the AAADV Fundamentals Workshop, and most recently spoke with nine US Senators at NIH to share her personal story of how research has prolonged her life.
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