I was in Boston on Monday for labwork, and just adjacent to the elevators is a wall rack where they display current issues of the MGH Cancer Center magazine. On the cover was a familiar image, a CT scan of lungs pre and post crizotinib. Although not identified, they are my lungs. So, I guess that makes me a cover girl.
While there I also paid a quick visit to my friend Sarah Broom (a poet: https://lifeandbreath.wordpress.com/2011/09/06/if-the-world/), who has traveled from her home in New Zealand to enroll in a Clinical trial at Massachusetts General Hospital. We had gotten together the previous week for lunch and on Sunday Evening she’d driven to our house in Amherst with her brother Alex, who was visiting from Australia to be with Sarah as she started trial (her husband is at home with their three young children). The meal on Sunday (local lobster) was really pleasant and Sarah’s brother is every bit as charming as she. Afterward they managed, for the most part, to stay on the right side of the road (which would be the wrong side of the road ‘down under’) on the drive back to Cambridge.
But more about Sarah and that back story. Back in August of 2008, when my oncologist (at that time, Dr. Tom Lynch) told me that as a newly identified ALK ‘mutant’ I was eligible for enrollment in the phase I trial for PF-02341066 (crizotinib), the trial was transitioning from an initial focus on gastrointestinal cancers to lung cancer. Only one other lung cancer patient had been on trial at MGH, and he had died within weeks of enrolling (his lung cancer was responding to crizotinib, but his disease was ultimately too widespread). Although this news did nothing to alleviate my fear, it also didn’t dampen my enthusiasm; possible death (trial) versus certain death (continued tarceva, chemo, or no treatment at all).
It was but a few weeks later that I became aware of Kevin Brumett, after my husband conducted an internet search for information on ALK mutations. Kevin had posted on Inspire, the online site which I soon joined and continue to participate in. I contacted Kevin, also an ALK mutant. He had been on trial at Dana Farber for some weeks and had recently gotten back his first scans, which showed significant improvement. Kevin immediately became my beacon; this courageous and incredibly optimistic young man who was just ahead of me on this path to who knew where.
I started trial on October 1, 2008 and soon thereafter Kevin told me of another fellow traveler, Sarah Broom, in New Zealand.
Unfortunately Kevin developed a large number of brain metastases early in 2006, and it was at that point that it began to be clear that crizotinib might not cross the blood/brain barrier. Several months later, Kevin died and Sarah and I fell out of touch for a time as well.
Perhaps a year and a half ago we began emailing again and eventually spoke on the phone as well. Now, in a curious turn of fate, we are in the same place once more, each enrolled in clinical trials. LDK378, which is a second generation ALK inhibitor for me, and AUY922, an HSP-90 inhibitor for Sarah. There is a good chance I will eventually go on AUY922 and she on LDK378. Talking at dinner the other evening, we figured that we are number three (Sarah) and number four (myself) in the world to have gone on crizotinib–(although I might have to share number four with another individual who went on trial either the day before or after me at MGH).
It’s all rather remarkable. Our friendship, begun in the most unlikely fashion, the distance we have each traveled (more metaphorically speaking when I refer to myself, but in Sarah’s case, coming from New Zealand, the real deal). The fact that we are both still here, trudging forward, looking for sure footing.
As for those liver enzymes; falling. SGPT is 66 and SGOT is 62. And the wine tasting party? So much fun (hosted by the same fabulous friends who made 11/11/11 special for Pete and I). Part of the evening involved a little contest; we were served pairings and asked to distinguish between labels/vintages. Well friends, my fellow contestants were all quite able, but out of a field of twelve, I tied for first after getting them all correct. My secret? Not mere luck, but rather a reliance on instinct (a superior tool in matters of the senses–but I was nonetheless surprised as well as mighty pleased by my little coup).
My prize? A lovely bottle of sauterne and liver enzymes headed in the right direction. Win win.
Thank you, Linnea, for being the beacon in the storm for many others, as Kevin was for you.
Keep up the good work on those liver enzymes so you can enjoy more wine tastings.
– a crizotinib-for-ROS1 trial trailblazer
Craig, from one trailblazer to another!
Great news. Thanks for sharing.
Thank you Cynthia!
Great great news. More wine!
And a toast too…enjoy that upcoming vacation. Sounds perfect!
Love your post, you cover girl, you! 🙂
Thanks Carol Ann!
Delighted we could assist w/ the enzyme project! Next time I’m sitting next to you for all the right answers!!! ❤ m
As I recall, you were a close second. And what a way to corral one’s enzymes!
lots of love,