Thursday, December 12, 2013

In the interest of keeping people updated, and not having to make a million phone calls to do it, I will attempt to sum up my Mayo visit for anyone who's interested.

The clinical trial that I was on allows for only 20% tumor growth (based on intake measurements of 2 tumors) before you are removed from the trial. My scan from Tuesday showed that I crossed that threshold (24% growth) and so I  am no longer taking the trial medication. Allow me to point out a few things that may forestall any forthcoming freak out:

1. I went to this appointment totally expecting to stop taking the trial medication (not because of tumor growth, but because my doctor had already told me last month about some things he was pondering for next steps)
2. The tumors that have had the 24% growth are in my lungs and were small to begin with (maybe 1cm) and so when put into perspective, 24% of small is still well, small, right?
3. What my doctor is proposing and trying to line up for about 2 months from now is kind of exciting and potentially beneficial to others with cholangiocarcinoma, not just myself. I don't have all the details yet and haven't fully wrapped my mind around the ones that I do have, but it sounds as though we are going to get Mayo Clinic's Individualized Medicine team involved and possibly some others.

So the news from Mayo this trip has been disappointing and exciting and slightly terrifying (for me at least) in measures that vary from moment to moment. I have two glorious treatment free months stretching out before me and a glimmer of hope sparkling on the horizon. I suspect that that hope is one of those things that seems beautiful from a distance but up close is bigger and more frightening than you anticipate. But I will cross that bridge when I get to it and the joy of the present is enough to sustain me through the rainy days.