Hi vtkb, thank you for your response and great question. Yes, we did ask the oncologist why Folfox because our research led us to expect GemCis as well. It is because the pathology report from the liver biopsy leaves open the possibility of a primary tumor elsewhere, so for now we are treating this as a cancer of unknown origin, and the Folfox would cover the other possible primary cancers. If we determine that the CCA is the primary, then we can change the treatment accordingly.
Good news that your surgeon thinks its resectable. Is there a reason they decided to start on FOLFOX first? Usually most are started on Gem/Cis as first line therapy- perhaps its worth asking your oncologist. Good luck in your journey
I have been lurking here for 3 weeks, soaking up as much information as I can, and feel like it’s time to introduce myself. First, I want to say what a fantastic source of help this site and forum are, thanks to all of you who contribute and take the time to respond and tell us about your own experiences.
I am a 57 year old female, fit and healthy (or so I thought before this year). I have a 6 cm mass in my liver that was first discovered incidentally back in early May of this year. A needle biopsy of the liver mass in July showed negative for malignancy. A followup MRI in Sept. showed that the mass had grown slightly, which prompted us to ask for a referral to a liver specialist, who reviewed my case with his team and performed a laparascopic biopsy 3 weeks ago. This biopsy showed that the mass is cancer, likely Intrahepatic Cholangiocarcinoma, but we are still waiting for the genomic testing results and in the meantime trying to rule out other cancers. The surgeon feels that it is resectable (although will be a complicated surgery due to the location), but wants me to have neoadjuvant chemo treatments first. I get my port implanted tomorrow and on Monday start the first cycle of Folfox (the plan is 12 cycles).
I feel like I am in limbo until I get a definitive diagnosis and staging, but I am glad to be moving forward with a treatment plan after all these months of waiting and uncertainty. Much love to all of you who are dealing with this disease. Please keep sharing your stories, I suspect there are many other lurkers out there like me who are looking to you for information and inspiration.