Square One

I think (maybe? I hope?) the most tumultuous time of this cancer journey is over for now. I have a plan and a schedule and am working on settling into a routine. Now I just relax and let science do its work.

I knew I was going to regret this statement when I wrote it at the end of my last post, hence the parenthetical admission of doubt. The most tumultuous time of this cancer journey  definitely came Friday when I went to the ER with severe liver pain. My liver levels had skyrocketed, but the CT scan didn’t show anything out of the ordinary (other than the massive tumor). Doctors decided the reaction was probably from the chemo and immunotherapy drug; they were just too much for my liver. I had finally, over the span of six weeks, brought my liver levels down to an acceptable level so that I would be eligible for the trial. It looks like I may not be eligible anymore. I see my doctor in Houston tomorrow morning, and we will reassess the situation.

The good news amidst all of this is that my genetic testing results came back, and I am positive for the FGFR2 gene mutation. Only about 15% of cholangiocarcinoma patients have this gene mutation. The only real treatment that has been proven to work in cholangio cases has been seen to work only with patients with this specific gene mutation. A drug has already been through the clinical trial process and has been proven to work. Unfortunately, it has yet to be approved by the FDA. I expect the doctor in Houston to talk to me tomorrow about my options as far as continuing with the clinical trial (if I am eligible) as well as possibilities of somehow gaining access to the FGFR2 drug.

I busted out of the hospital on Saturday, just in time to spend a lovely Easter with my family. Today I have an appointment with my palliative care doctor, and tonight I’ll catch a late flight to Houston. Thanks, as always, for all of the love and support. Please continue to send some positive vibes my way this week as I find out what is next in this very tumultuous journey.