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 (#10), especially for those who were unable to join us in person on Thursday (August 5).
We learned from Kasey that she isn’t feeling great since she is in one of the down periods in her chemotherapy cycle, but doing relatively well. Kasey also reported on her meeting on Tuesday with her lead oncologist at Memorial Sloan Kettering (Dr. Lenny Wexler) and Kasey’s onco-psychologist. To keep Kasey’s cancer at bay while waiting for her personalized cancer vaccine, which should be ready in a few months, they are planning to add a 15th cycle of IV (not oral) chemotherapy, or use a liquid biopsy to monitor her cancer markers (such as MYCN and P53).
Delsee updated us on other recent developments:
Rick Stanton analyzed Kasey’s RNA sequencing data and believes that one of her distinctive mutations (B7-H3) has disappeared, eliminating it as a treatment target. Delsee thanked a number of people who had made introductions to key contributors to Kasey’s treatment options, and she appealed to everyone who has accessed the treatment options document to give us feedback, especially clinicians.
Grace Cordovano raised the question of how to monitor progress and results from Kasey’s immunotherapy trial, other than a relapse. We can’t just fall back on our list of treatment options, because the vaccine could move things around, and we could have a hole in our list. If the vaccine fails, what are other positives that we possibly could look for, e.g., immune modulation, that Kasey could leverage in the decision for her next treatment?
Damon Reed shared his views on the hackathon process for Kasey. He feels the hackathon has been really good at identifying all the potential therapies: conventional, targeted, immune, and even further out of the box than that. However, prioritizing and distilling it down to an exact recommendation for therapy is very hard to do in this forum. It’s easier in a room without cameras on and recording, and with the individual patient in a conversation back and forth with lots of questions along the way. The disadvantage of having a lot of different doctors involved is that you will get different opinions, and that makes things a little bit chaotic. Every patient and oncologist should feel empowered to try to fix the problem in front of them, but the system exists to have some rigor so that you can actually prove that you’re moving things forward. Oncologists argue about whether “an anecdote is an anecdote, a signal, or data.” People like it when things happen more than once. This is a nice little disruptive thing to change the care for the next fusion positive rhabdomyosarcoma patient that gets diagnosed, though we would probably need a more formal trial result to convince everyone that we actually figured something out. A patient visit is ideal, and having all the scans, and looking through it, to actually make a recommendation.
Tessa Marcus commended the hackathon process because it’s really important for patients and families of patients to actively determine the menu, as opposed to just being present at the table. The critical difference is the very presence of active family-driven querying, even though we are ignorant of all the dimensions of what’s involved in the treatment and certainly can’t replace the oncologist and other specialists.
Kasey closed by saying that knowing that we’re doing something different than what’s been historically done is enough to supply her with a sense of hope. Brad added that another benefit of the hackathon is confidence — having multiple people converge on a consensus opinion about the best next treatments. And Delsee added education — the shared learning in the community that has formed around Kasey.
For more details, please reference the lightly edited transcription of the meeting (below), and the video recording of the meeting below.
In Closing: Our Requests
What do you think of Kasey’s treatment options as described in our working document?
What do we need to do to prepare for the review board meeting which will prioritize Kasey’s best next treatment options (contingency plans B, C, and D)?
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power