Thanks again for your interest in the Kasey Altman hackathon to find the best next treatment for this rare cancer patient. This is our weekly update (#12), especially for those who were unable to join us in person on Thursday (August 19).
We heard an update from Kasey, who is feeling well and enjoying a vacation on a lake in Canada. She got good news in a recent blood biopsy showing no evidence of the variants (MYCN and TP53) that may have been contributing to her cancer. Kasey will have her last round of chemotherapy next week and then with the current plan to have six weeks off before starting the personalized neoantigen vaccine trial in late October.
And we heard from Delsee, who thanked the many people that are helping Kasey get information to guide her treatment, singling out Tom Turcat of OmiCure, who ran an analysis on Kasey’s raw RNA data (which you can see on Slack), and Rick Stanton, who has been analyzing Kasey’s sequencing data. Delsee also told the story of Kasey’s online physical training session being cancelled because the therapists couldn’t work across state lines, much less country lines.
We then continued our conversation on the process for turning Kasey’s long list of potential treatment options into a prioritized short list of contingency plans B, C, and D. We are working in the background on a document to help new clinicians to Kasey’s case understand the context and work we’ve done, and another version to guide us in the prioritization meeting. David Shalinsky, Tessa Marcus, Damon Reed, and Elena Brin have been contributing to the design, with a focus on delineating the roles of the hackathon (ideas and community), the prioritization board (information on how to think about priorities), and Kasey’s family and medical team (treatment decisions).We talked about the concerns that clinicians may have in participating, such as liability, employer resistance, and giving medical advice in an open setting; and ways to overcome those concerns, such as a brief but thorough onboarding process for clinicians who agree to participate, a clear delineation of informal information sharing vs. a medical recommendation, and not recording the session. The date of the prioritization meeting is tentatively Sunday, September 12, and 8:00pm Eastern. This will be for a closed group of clinicians, and then we will review the results with our larger hackathon community on Thursday, September 16, at our regularly scheduled weekly meeting.
Please see the recordings below for more details.
In Closing: Our Request
What advice do you have for the process which will prioritize Kasey’s best next treatment options (contingency plans B, C, and D), especially motivating clinicians to participate? If you have time, please see the draft in Slack and comment there.
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power