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 (#9), especially for those who were unable to join us in person on Thursday (July 29).
We heard an update from Kasey, who has been getting knocked down by her chemotherapy cycles but is getting up again each time, and she was up. She noted that she will be having a big meeting with Dr. Wexler on Tuesday (August 3) to review her case and plans.
And we heard from Delsee, thanking all of the many contributors for improving Kasey’s list of treatment options. Delsee shared a list of treatments for Kasey’s cancer from the Children’s Oncology Group here and a paper here.
The list of the class of agents nominated by the task force are:
Novel cytotoxic agents
DNA damage/repair
Epigenetic targets
Immune Targets
Tyrosine kinase inhibitors
Cell cycle inhibitors
And there is a list of the top 5 agents identified by the task force:
PARP 1 inhibitor/cytotoxic agent
MEK 4 inhibitor/IGF1R 5 inhibitor
PLX038
HDAC 6 inhibitor
eribulin
In our roundtable discussion we spoke first about bridging Kasey over the next few dangerous months, to keep her with no evidence of disease, as she awaits the personalized vaccine clinical trial. Delsee explained that it is a balancing act: you want to give your body a break so it can recuperate before the introduction of immunotherapy, but at the same time you don’t want to be exposed for too long without some kind of treatment. And any treatment Kasey might take must not violate the entrance criteria for her personalized vaccine trial. Elena Brin suggested consulting with Dr. Wexler on a reduced chemotherapy dose — something Kasey responds to now, but a very small dose that wouldn’t affect her immune system. Elena also recommended checking for real world evidence of treatments that people are seeing that are working for both potential maintenance therapy and as a treatment in case of relapse.
We then continued our conversation on winnowing Kasey’s potential treatment options toward a short list of the two to five best, so that when we have our review board conversation in a few weeks, we will be discussing a shorter, more manageable list we can focus on for her best next treatment. Our working document of treatment options (here), is being organized and simplified to make it more useful in the upcoming review board meeting. Grace Cordovano, David Shalinsky, Berkley Gryder, and Elena Brin have been contributing edits. We will be developing a presentation version as well for the review board.
In Closing: Our Requests
What questions should Kasey be asking her medical team? (Please send your ideas via email or Slack, preferably before her meeting with Dr. Wexler on Tuesday.)
What should Kasey do over the next few months to keep her safe before her personalized vaccine trial?
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