as you know, i was really struggling with whether or not to join a clinical trial, named I-SPY2. it is evaluating the effectiveness of different drug combinations for her2+ patients. the study has 3 unblinded arms to it and hadn’t yet published results. so you knew which drugs you were getting but not too much more about how successful they are.

when my doctor first laid out treatment sans trial, my recommended protocol was to start taxol (a plant-derived traditional chemo that disrupts cells when they are dividing, ultimately resulting in cell demise) and herceptin (a targeted therapy that shuts down the receptors for the her2 protein, which my cells have too much of so have the fuel for rapid cell growth). for the trial, each study arm has taxol plus another drug–it could be herceptin or some newer, promising drug. those newer promising drugs sound, well, promising. it was definitely enticing to be on the cutting edge and think i could have a higher survival rate than the recommended protocol. but on the flip side, i could have a lower survival rate. they just don’t know, which is why these trials are so important.

because the protocol for my disease is so well-established, and the trial required additional time and invasiveness with multiple more MRIs and biopsies and would have required me to switch surgeons mid-stream, i decided not to participate. i know it was the right decision for me, but there is some lingering…regret? confusion? annoyance that we lack perfect information and don’t live in black and white? probably all of the above.

so, i’ve been doing a ton of internet and waiting room flyer sleuthing on other clinical trials or studies to join, greatly aided by breastcancertrials.org. the studies i qualify for range from ovarian function after treatment and sleep problems during chemo, to heart damage on herceptin, preventing lymphadema, managing fear of reoccurence, building an online community for emotional support, and novel genetics in young women.

i’m enrolled in 3 different studies now, and the coolest one is around genetics and trying to understand all the genes that might contribute to why young women (me) get really aggressive breast cancer (also me). my parents get to join in the fun too and provide blood samples. the study is even close to home for them and based out of my dad’s oncologist institution at washington university and the siteman center. yes, we calcari’s are what dreams are made of–becoming lab rats together! an oncologist’s dream!

a co-worker/genius who used to consult for mckinsey worked with the man, dr. von hoff, who helped get the taxol alkalines to a form that patients could accept. she shared a beautiful story with me that breathes life into the research community and that they are more than nerdy lab coats or big pharma penny pinching their way to profits. when my colleague was working with dr. von hoff, she was clued into something in his office that only he, from the vantage point sitting in his desk, could see. above his door, there was a sign that read: cancer doesn’t sleep so neither should we. (he really meant it. he literally only sleeps 3 hours a night). he believes that we can wipe out all cancers in the next 25 years. and his daily research is helping that march towards what i hope becomes reality. as my co-worker said, she thinks of him often, and it provides a reminder to keep your (my) eyes on what you’re (i’m) trying to accomplish and not get distracted by the day to day burden of getting there (her words, not mine).

so, that’s where i sit today. little stories and snippets like this really mean something, and that is what is motivating me to get more involved in the research too.

take care and thanks for your continued check-ins. i’ve received some pretty incredible toddler artwork this week (noah and levi!) – there are some budding picassos in the blog circular, i’m happy to say.  keep on keepin’ on.

xom