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, especially for those who were unable to join us in person on Thursday (June 10).
The focus of the conversation was getting our efforts organized moving forward, including three critical paths: (1) what data (diagnostics) we should be gathering, (2) what treatment options exist, and (3) who to participate, especially who best to help prioritize, assess, and decide on Kasey’s best treatment. As people shared questions and ideas, they briefly introduced themselves, and we learned about the wide and deep expertise in the group.
Here is the latest news from Kasey and Delsee:
Kasey joined the meeting “live from MSKCC” and reported that she is undergoing 2.5 days of hyperhydration along with 24 hour chemo infusions, and had a false alarm. Her next scan (PET/MRI and CT) is scheduled for Monday, June 21, and we are keeping our fingers crossed for a diagnosis of “No Evidence of Disease”.
Picking up on an issue raised in the conversation with Kasey’s oncologist (Dr. Lenny Wexler) last week, Tempus is re-running the RNA sequencing (originally ordered for Kasey’s plan to enter this clinical trial).
We are going to be drafting three foundational documents and updating them as we go: (1) tests that Kasey should get, (2) treatment option candidates, and (3) review board candidates.
Here are some highlights of recommendations from the group as we get the hackathon underway:
From Bill Passman, an expert in hackathons, having run one for himself in 2018 for his rare kidney cancer: You may want to wait to run tests on the tissue until you have all the people on board who will be reviewing the data. Tissue is precious and may need to be saved. Note whether tests are clinical (can be used for patient recommendations) vs. research grade.
From Grace Cordovano, a leader in cancer patient navigation: You should save >30% of the biopsy tissue for Kasey. You should have a system to scan the literature and conferences for new developments that may be relevant.
From Rebecca Owens, an expert in diagnostics developing patient navigation services: You should strongly consider getting whole genome sequencing over various oncopanels or whole exome sequencing. It is like “defensive driving” — you are covered if things change.
From Rick Stanton, a pharmaceutical veteran, prostate cancer patient, and developer of a cancer navigation app: You should get a comprehensive immunohistochemistry panel of Kasey’s tissue, RNA sequencing, and spatial analysis that describes the tumor microenvironment.
Several people offered the services of their organizations to help Kasey:
Stefano Pacifico of Epistemic AI offered their AI platform to the group for uncovering treatment options and personalized matching with patients.
Berkley Gryder of Case Western, with a rhabdomyosarcoma specialty, will contribute his advice. If RNA seq data is available, he will compare Kasey to his hundreds of other rhabdomyosarcoma RNA seq samples from a gene expression profile.
Nahuel Villegas of Vivian offered to develop a fruit fly model for Kasey to test treatment options under consideration.
Simon Davies and Hilary Gan of Teen Cancer America offered to help with publicity and engagement.
Our Requests
Tests: If you know of any tests Kasey should get to add data to the treatment decision process, please let us know.
People: If there is anyone who you think would enjoy the hackathon or would be a useful contributor, please invite them to participate at cancerhackerlab.com.
Treatments: If you have any ideas on treatment options, please submit them.
Online discussion: Please use our online discussion forum (Slack) if you have questions, suggestions, or comments.
Please see the recording below for more details.
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power