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For those who do not know Emily, thank you for taking the time to read her story. Emily is a 41 year old woman from Albury. She lives with her loving partner, Adam, and is the mother of 4 beautiful children. Emily is in her 2nd year battle with stage 4 metastatic Cholangiocarcinoma. Cholangiocarcinoma is a rare, aggressive and difficult to treat form of liver cancer. Stage IV Cholangiocarcinoma has a median survival of 11 months. Over the past year, Emily has undergone chemotherapy and immunotherapy to slow the progression of her disease.
A new understanding of the genetic mutations that drive Cholangiocarcinoma is leading to advances in targeted therapy, including the discovery of an oral inhibitor drug, Ivosidenib, that targets the IDH1 mutation that Emily has.
A recent phase 3 trial of Ivosidenib in Stage IV cholangiocarcinoma demonstrated a significant increase in progression free survival and overall survival, with 22% of participants free from progression at 1 year (the limit of the trial).
It is now the consensus between Emily's oncologists in Albury, clinicians at Peter Mac, Mayo Clinic and Dana Farber (Harvard) that Emily should try this new treatment option.
Ivosidenib has just completed clinical trials and, while accessible in Australia, is not yet covered by the PBS. For this reason it comes at a prohibitive cost of $56,000 (AUD) per 30 days or $1870 per day.
We are asking for contributions so we can fund the initial 4 month trial of this drug treatment for Emily.
It is our greatest hope that Emily is with us to see her youngest children Patrick and Gabriel start school.
Please read more about the research here:
We are incredibly grateful for any contribution. Please share.