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Kasey altman's hackathon updates
You are cordially invited to Kasey Altman‘s private Celebration of Life which will be streamed live on her TikTok account on:
Saturday, July 30, 2022
6pm-8pm PST / 9-11pm EST
Weekly Update Meetings
** Click on any date to drop down to that section of the page
Table of Contents
June 3, 2021: Launch & Introductions
Meeting notes
Thanks for your interest in the Kasey Altman hackathon to find the best next treatment for this rare cancer patient.
On Thursday, June 3, we launched the Kasey Altman Hackathon with a presentation of her medical history by her oncologist, Dr. Lenny Wexler of Memorial Sloan Kettering Cancer Center.
Here are some highlights from Dr. Wexler’s presentation and the following discussion:
- Kasey is a 24 year old woman, diagnosed in October 2020 with stage 4 Fusion-positive (PAX3-FOX01) Alveolar Rhabdomyosarcoma with lymph node and bone involvement
- Her tumor cells are positive for B7-H3; negative for NY-ESO-1, Her2, PD-L1, EGFR.
On November 7th she received her first cycle of a standard chemotherapy – “VAC” (Vincristine, Actinomycin-D,and Cyclophosphamide). - After three cycles (9 weeks) she had an expected prompt and dramatic improvement. Normally this cancer is highly responsive to chemotherapy, but it often recurs.
- In early January, she began the first of three cycles of Vinorelbine and Irinotecan.
Subtle evidence of slight interval progression at primary site between first and second staging scans prompted repeat biopsy in early March - March 2021 biopsy results: Microsatellite stable (MSS), tumor mutational burden 1.6 (low Tumor Mutational Burden)
- MYCN amplification change: 59.1 (increased x20 since Oct. 2020 bx)
- TP53 deletion, mutation
- In March, she resumed “VAC” and “VC” chemotherapy while having 33 rounds of radiation – proton therapy – to her primary site, hip bones and sites of initial nodal involvement.
- On May 17, she began her first of three final planned cycles of another chemo combination (VAI with Ifosfamide replacing Cyclophosphamide), which is gentler on the immune system in anticipation of her eventual consolidation with a personalized vaccine.
- Whole exome sequencing and RNA sequencing has been performed by Tempus. Three attempts to do RNA sequencing at Memorial Sloan Kettering failed.
- Concern was shared over results of the RNA sequencing report, prompting need to follow-up with Tempus (method?) and MSK (residual tissue available?)
- Questions pending include biopsy changes due to genetic evolution or subclonal expansion, why PDX attempts have failed, Dr. Ezra Cohen’s ASCO presentation on UCSD precision immunotherapy trial requested
- Expectation – MYCN increase x20 would yield other findings on RNA report
- The Target Cancer Foundation’s Jim Palma will be helping with their TRACK program.
Conner O’Brien of Ciitizen described their services to host and share Kasey’s medical data.
Please see the lightly edited transcription of the meeting and the recording below for more details. Action and pending items will be revisited next Thursday.
If you have any questions, please feel free to contact Kasey or Delsee Altman at kaseyhackathon@gmail.com or Brad Power at bradfordpower@gmail.com.
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power
Intro + Dr. Wexler summary (15 min video)
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Discussion + Q&A (45 min video)
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June 10, 2021: Meeting #2 - Getting Organized
Meeting notes
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 recommendation 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
1. Tests: If you know of any tests Kasey should get to add data to the treatment decision process, please let us know.
2. 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.
3. Treatments: If you have any ideas on treatment options, please submit them.
4. Online discussion: Please use our online discussion forum (Slack) if you have questions, suggestions, or comments.
Please see the lightly edited transcription of the meeting below, and the recording below for more details.
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power
Meeting #2 Update (9 min video)
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Discussion + Q&A (49 min video)
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June 17, 2021: Meeting #3 - A Personalized Neoantigen Vaccine
Meeting notes
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 (#3), especially for those who were unable to join us in person on Thursday (June 17). Each call has its own flavor, and this one turned into a tutorial/education session with the crowd experts helping us (the lay people/patients/caregivers) understand the science and the choices Kasey faces, especially for her plan to get a personalized cancer vaccine.
Kasey’s Update: In the Hospital Due to Chemo Side Effects
Kasey joined our call from Memorial Sloan Kettering. She was hospitalized at midnight on Wednesday with a fever (over 102) and neutropenia (low neutrophil count) before her Neulasta shot could augment her numbers. (Unfortunately, she missed Tuesday night’s Nets playoff game. She had surprised her dad with tickets for Father’s Day.) It is typical to reach a low ebb 8-10 days after heavy chemotherapy. She got labs, cultures, and IV antibiotics.
Kasey is scheduled to get scans (PET/MRI and CT) on Monday (June 21). We should have results by our next update on Thursday. Hopefully “No Evidence of Disease”!
Delsee’s Update: Worried about Bridging Kasey to Her Immunotherapy Trial
Delsee reported that Dr. Ezra Cohen’s projections for the availability of a personalized cancer vaccine for Kasey is estimated to be 16 weeks out (which works out to be in early October). This timing creates a possible coverage gap between the end of Kasey’s 9-month frontline treatment (which is coming up in a week) and the beginning of the cancer vaccine. While Kasey’s cancer is responsive to front line treatment, it is known to be aggressive. The challenge is keeping a possible recurrence at bay.
Delsee also updated us on Kasey’s tests: Tempus is performing whole exome sequencing (WES) on the March biopsy tissue, per Dr. Cohen’s request, to provide a complement to the RNA sequencing done on the same tissue sample.
Roundtable Discussion: The Science of Targeted Immunotherapies
The majority of our roundtable discussion revolved around questions, explanations, and suggestions relating to immunotherapy: from differentiating typical vaccines from cancer vaccines and CAR-T cell therapy from precision immunotherapy treatment. Elena Brin (CSO of Athae Bio) helped shed light on these concepts fundamental to Kasey’s current plan and options. For example, among options for patients who express the B7-H3 antigen (which Kasey’s cells highly express), there is a CAR-T clinical trial, eligible to those who experience recurrence or who are refractory (not responding to treatment.)
Data Gathering Update: Recommendations for Potential Tests and Treatment Options
The conversation last meeting and at this meeting reinforced the importance of having working documents that capture the discussion around things like best tests and best treatments. We now have shared docs drafted on tests and treatments for Kasey. Besides a simple spreadsheet, we are also capturing the rationale or explanation that underlies some of the diagnostics and the treatments. At your convenience, please review and comment on these working documents:
In Closing: Our Requests
- Please review the working documents on Kasey’s possible tests and treatments and edit and comment.
- Please check out the online conversation (on Slack) and add your comments, questions, and suggestions.
- For more details, please reference the lightly edited transcription of the meeting (Google docs link below) and the recording (also below).
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power
Video: Status update - In the hospital with fever and low immune system (3 mins)
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Video: Discussion - Transitioning to a personalized cancer vaccine clinical trial (53 mins)
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June 24, 2021: Meeting #4 - Working Documents for Testing and Treatments
Meeting notes
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 (#4), especially for those who were unable to join us in person on Thursday (June 24).
Following the excellent news that Kasey has responded to her chemotherapy and radiation regimen with a scan this week which showed “No Evidence of Disease”, we mostly talked about two working documents that will enable actionable recommendations:
- Diagnostic Tests: Our working document “Kasey Altman Tests” lists (a) the tests that Kasey has taken at a high level, (b) the testing options that she can exercise with existing tissue or blood biopsies, and (c) the tests that should be initiated if her cancer recurs and there is more biopsy tissue available.
- Treatment Options: Our working document “Kasey Altman Treatment Options” lists (a) the treatments that Kasey has received at a high level, and (b) the treatments she might consider, as the basis for a conversation about Kasey’s Plan B, C, and D, and the ability to rejigger the priorities if the disease evolves. The key value the hackathon provides is confidence in making the best decision on the next treatment, and this document structures those choices.
We also talked about access to data, and reiterated that all of Kasey’s medical history, scans, and raw sequencing files currently available may be shared just by asking Delsee.
Kasey’s Update: No Evidence of Disease! And an Article!
Kasey reported that, as hoped, she received the excellent news that her scan on June 21 saw “no evidence of disease”! Yay! All that chemotherapy and radiation did the job. Lurking in the background is the fact that there is a 70 percent chance of recurrence.
The other good news was news: an article about Kasey’s case (I love that alliteration), the hackathon, and Kasey’s podcast with her sister, was published in the San Diego Union-Tribune.
Delsee’s Update: Uncovering Treatment Options
Delsee reported on the many conversations she has been having with experts who have possible treatments for Kasey, many of whom were thanks to Berkley Gryder and his contacts. A number of these treatments necessitate being refractory (not responsive to treatment) or having recurrence. This list of possibilities is ready should the need arise. Please see the treatment options working document for the full list.
Roundtable Discussion: Refinements to the Testing and Treatment Documents
The majority of our roundtable discussion revolved around suggestions for additions and modifications to the testing and treatment options. You can see the discussion in the transcript which follows.
In Closing: Our Requests
- Please review the working documents on Kasey’s possible tests and treatments and edit and comment.
- Please check out the online conversation (on Slack) and add your comments, questions, and suggestions.
- For more details, please reference the lightly edited transcription of the meeting (link below) and the video recordings below.
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power
Video: Status update (10 mins)
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Video: Discussion (23 mins)
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July 1, 2021: Meeting #5 - Dr. Ezra Cohen Presents Personalized Cancer Vaccines
Meeting notes
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 (#5), especially for those who were unable to join us in person on Thursday (July 1). This meeting featured a presentation by Dr. Ezra Cohen of UCSD, who is leading the personalized cancer vaccine clinical trial that Kasey will be entering in October.
Dr. Cohen’s Presentation: Personalized Cancer Vaccines Are a Promising New Approach to Many Cancers
Dr. Cohen spoke for about 20 minutes to introduce his experience with personalized cancer vaccines, and then answered questions for about 10 minutes. He described the process of identifying and verifying neoantigens (antigens are structures on the surface of cancer cells, and neoantigens are antigens which are abnormal), which has been done successfully across a long list of tumor types, to which sarcoma will now be added. Dr. Cohen focused on “immune editing”: the ability to target and eliminate identified antigens. He also explained the changes that have been made to the process as they have gained experience, creating an Arm C and Arm D. Arm D is the trial that Kasey will enter, as it is designed for patients with no evidence of disease, but a high probability of recurrence. It has a stronger vaccine dose and no pembrolizumab.
You can see his slides (pdf), a full transcript and a recording below.
Roundtable Discussion: Tests and Treatments Update
In the open roundtable discussion after Dr. Cohen left, Delsee reiterated that the Tempus whole exome analysis should be ready in a week or two, and she introduced Filtricine, which offers a personalized nutrition approach to starve cancer cells. Filtricine is a candidate therapy for Kasey in the month between the end of her two months of chemotherapy and the start of her personalized cancer vaccine trial in October.
In Closing: Our Requests
- Please share your specific questions, comments, or suggestions regarding Dr. Cohen’s personalized neoantigen vaccine via our online discussion platform (Slack). He is very open to feedback.
- Is there anything you recommend Kasey minimize, avoid, or increase regarding her dietary intake over the next four+ months? (Please comment on Slack.)
- Please review the working documents on Kasey’s possible treatments (here), including the personalized neoantigen clinical trial, and edit and comment.
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power
Video: Update + Dr. Cohen's Presentation (13 mins)
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Video: Q&A + Discussion (29 mins)
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July 8, 2021: Meeting #6 - Treatment Options
Meeting notes
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 (#6), especially for those who were unable to join us in person on Thursday (July 8).
Kasey’s Update: Tolerating Her Chemo
We learned that Kasey is feeling better, even though her chemo has knocked her down harder than previous rounds. Kasey is taking the chemotherapy to bridge her to her next round of treatment, an immunotherapy clinical trial, scheduled for October.
Delsee’s Update: Kasey’s Raw Sequencing Data Available for Review
We have Kasey’s raw sequencing data from Tempus, and five researchers have requested access so far. If you have any interest in accessing this data, just send a quick request, and we will give you the credentials to do so.
Discussion: Dr. Cohen Feedback and Treatment Options
We gathered questions and feedback for Dr. Ezra Cohen of UCSD, who is leading the personalized cancer vaccine clinical trial that Kasey will be entering, and started the conversation about Kasey’s treatment options. Damon Reed described his perspective on an evolutionary review board approach to treatment options.
Please Answer Our Three Top Questions
- Chemo Complement: Is there anything out there with proven effectiveness to add during Kasey’s bridging period of chemotherapy (VAI: Vincristine, Actinomycin-D, and Ifosfamide) that would be acceptable to Kasey’s physician, Dr. Wexler? (“Western,” or non-western).
- Treatment Options: What do you think of the current list of Kasey’s treatment options? Anything to add?
- Experts: Are there any experts we should invite to contribute to Kasey’s treatment options and prioritization?
If you have answers or suggestions to these three questions, please respond on our online discussion forum (Slack), or drop us an email at the addresses below.
Thanks,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power
Video: Update #6 (3 mins)
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Video: Q&A + Discussion (55 mins)
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July 15, 2021: Meeting #7 - Fruit Fly Tests, Bridging Therapies, and Choosing Treatments
Meeting notes
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 (#7), especially for those who were unable to join us in person on Thursday (July 15). There is a quick summary below, a longer meeting transcript below that, and the full meeting recording below.
Kasey’s Update: Feeling Good
Kasey reported that she’s in a good phase in her chemotherapy, which she is taking to bridge her to her next round of treatment, an immunotherapy clinical trial, scheduled for October.
How Fruit Fly Avatars Can Test Therapies for Kasey
Nahuel Villega of Vivan Therapeutics described how they plan to develop fruit fly avatars that will mimic Kasey’s tumors and allow testing of various therapies. (For more details, please see the meeting transcript below, Naheul’s presentation slides, and the recording.)
Additional Therapies for Kasey Between Her Chemotherapy and Immunotherapy
Will LaValley described how natural product supplements and some primary care pharmaceuticals can be used in conjunction with targeted therapies. He cited an article which introduces these ideas.
Xiyan Li of Filtricine offered that their dietary product could be used in the window between Kasey’s chemotherapy and immunotherapy.
How to Identify and Prioritize Kasey’s Treatment Options
Ally Perlina of CureMatch shared how they analyze NGS reports and other patient data to identify and prioritize drugs. (Please see the discussion and her slides in the transcript below.)
Our Request: Help Prioritize Kasey’s Treatment Options
How could we develop a short list from the current list of Kasey’s treatment options?
If you have answers to this question, or any other suggestions, please comment in our shared documents, online discussion forum (Slack), or drop us an email at the addresses below.
Thanks,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power
Video: Update #7 (2 mins)
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Video: Q&A + Discussion (54 mins)
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July 22, 2021: Meeting #8 - Treatment Option Priorities
Meeting notes
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 (#8), especially for those who were unable to join us in person on Thursday (July 22).
In this session we focused 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. On our working document of treatment options (here), there are currently between twenty-five and thirty options.
Experts Berkley Gryder, Elena Brin, and David Shalinsky shared their views on how they would think about the decision Kasey and her family will face, and shared the choice they would make.
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Berkley Gryder: Focusing on Kasey’s PAX3-FOX01 fusion [The PAX3-FOXO1 fusion gene is a signature genetic change found only in alveolar rhabdomyosarcoma, and thought to be responsible at least in part for its malignant phenotype.] and MYCN amplification [The MYCN gene is a member of the Myc family of oncogenes. These genes play important roles in regulating cell growth and division (proliferation) and the self-destruction of cells (apoptosis).], and HDAC inhibitors [Histone deacetylase (HDAC) inhibitors are a relatively new class of anti-cancer agents that play important roles in epigenetic or non-epigenetic regulation, inducing death, apoptosis, and cell cycle arrest in cancer cells.] There are three drugs which inhibit HDAC on Kasey’s list, and I would choose Entinostat.
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Elena Brin: I would advise to consider a combination of at least two drugs, such as an HDAC inhibitor + another drug, e.g., a BRD4 inhibitor [Bromodomain-containing protein 4 (BRD4) is an epigenetic reader that recognizes histone proteins and acts as a transcriptional regulator to trigger tumor growth and the inflammatory response; inhibition of HDAC is thought to reduce PAX3-FOXO1 expression, while inhibition of Brd4 can downregulate Myc] would be ideal. Alternatively, a combination of HDAC inhibitors with common anticancer drugs for rhabdomyosarcoma (such as vincristine, actinomycin D, cyclophosphamide, etoposide and doxorubicin). Another combination to consider – an mTOR inhibitor [mTOR inhibitors are a class of drugs that inhibit the mechanistic target of rapamycin, that regulates cell growth, cell proliferation, cell motility, cell survival, protein synthesis, autophagy, and transcription.] and a tubulin inhibitor [Tubulin inhibitors are chemotherapy drugs that interfere directly with the tubulin system to inhibit cell division (mitosis)]. A third option would be a cancer antigen-specific delivery of a drug or cell therapy (e.g. anti-B7-H3-topoisomerase I inhibitor antibody drug conjugate or anti-B7-H3-CAR-T).
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David Shalinsky: I would look at approved drugs (such as crizotinib is for ALK), mTOR, and DNA damage and repair.
We are updating and simplifying Kasey’s treatment options document with this input.
For more details, please reference the edited transcription of the meeting (below), and the video recording of the meeting below.
In Closing: Our Request
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If you were in Kasey’s Review Board meeting, which treatment would you prioritize for her?
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power
Video: Update #8 (5 mins)
Play Video about Kasey Altman Update 8
Video: Q&A + Discussion (52 mins)
Play Video about Kasey Altman Q&A 8
July 29, 2021: Meeting #9 - Continuing Discussion of Treatment Priorities
Meeting notes
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:
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Novel cytotoxic agents
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DNA damage/repair
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Epigenetic targets
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Immune Targets
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Tyrosine kinase inhibitors
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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
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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.)
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What should Kasey do over the next few months to keep her safe before her personalized vaccine trial?
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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
Video: Update #9 (3 mins)
Play Video about Kasey Altman Update 9
Video: Q&A + Discussion (44 mins)
Play Video about Kasey Altman Discussion update 9
August 5, 2021: Meeting #10 - The Best Process for Finding the Best Treatment Options?
Meeting notes
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
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What do you think of Kasey’s treatment options as described in our working document?
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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
Video: Update #10 (6 mins)
Play Video about Kasey Update 10
Video: Q&A + Discussion
Play Video about Kasey Discussion 10
August 12, 2021: Meeting #11 - Refining the Prioritization Process
Meeting notes
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 (#11), especially for those who were unable to join us in person on Thursday (August 12).
We heard an update from Kasey, who was feeling well, despite being knocked down by her latest chemotherapy cycle, of which she has one more to go.
And we heard from Delsee, who shared that they are waiting for an update from Dr. Ezra Cohen on the process and timeline for Kasey’s personalized vaccine treatment. She also connected with Dr. John Maris of Children’s Hospital of Philadelphia about a possible test of the immune system that may increase the immunogenicity of patients with rhabdomyosarcoma.
We then continued our conversation on the process for turning Kasey’s potential treatment options into a prioritized short list of contingency plans B, C, and D. Delsee described her ideal vision of a discussion with (a) 4-5 clinicians, (b) Elena Brin to represent the biomedical research point-of-view, and (c) a patient advocate, such as Grace Cordovano. 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 strong onboarding process for clinicians who agree to participate, a clear delineation of informal information sharing vs. a medical recommendation, and not recording the session.
We are developing a presentation to help introduce clinicians to Kasey’s case, the treatment options, and roles in the process of treatment prioritization. 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).
Please see the lightly edited transcript of the meeting below or the recording 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)? If you have time, please see the draft in Slack and comment there.
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power
Video: Update #11 (3 mins)
Play Video about Kasey Altman Update 11
Video: Q&A + Discussion (40 mins)
Play Video about Kasey Altman Discussion 11
August 19, 2021: Meeting #12- Clinician Engagement in Treatment Prioritization
Meeting notes
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 lightly edited transcript of the meeting in the Google doc link below or 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.
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power
Video: Update #12 (4 mins)
Play Video about Kasey Altman Update 12
Video: Q&A + Discussion (22 mins)
Play Video about Kasey Altman Discussion 12
August 26, 2021: Meeting #13- Done with Frontline Treatment, Getting Ready for the Personalized Vaccine
Meeting notes
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 (#13), especially for those who were unable to join us in person on Thursday (August 26).
Kasey finished her frontline treatment on August 25 and rang a bell to celebrate! You can see a video of the joyous event here. Kasey will start treatment in a clinical trial of a personalized neoantigen vaccine in San Diego in late October.
Delsee reported that they are getting ready for Kasey’s West Coast stay of six to eight months, making sure records and everything she needs will be ready in San Diego for her personalized neoantigen vaccine clinical trial. The peptides were ordered. Between now and October Kasey will get a liquid biopsy and scans to monitor progress. We discussed the specific tests that can check for Kasey’s unique mutations.
We also discussed the prioritization panel and process to be held on Sunday, September 12, mostly with clinicians and researchers. Here’s the latest version of the “Hackathon on a Page”:
Delsee thanked Ciitizen again for their efforts to get Kasey’s medical records together for sharing, and Tessa Marcus for creating an article that is going to summarize this hackathon for a medical journal. We had a meeting with Certis to discuss the possibility of a precision oncology toolbox that can be shared and how to go about that, such as organizing a panel to talk about the various diagnostic options that are available to patients.
Please see the lightly edited transcript of the meeting below or the recording here for more details.
In Closing: Our Requests
Any advice for publicizing the work of the hackathon and the issues it has raised?
Interested in engaging in a discussion of diagnostic tools that patients should be aware of?
Any comments on the discussion documents for the prioritization meeting? (Please comment on Slack or via email.)
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power
Video: Update #13 (5 mins)
Play Video about Kasey Altman Update 13
Video: Q&A + Discussion (39 mins)
Play Video about Kasey Altman Discussion #13
September 2, 2021: Meeting #14 - Prioritization Panel
Meeting notes
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 (#14), especially for those who were unable to join us in person on Thursday (September 2).
Kasey is recuperating well from her last round of chemotherapy. She and her family flew home to San Diego Saturday (September 4), where she will start treatment in a clinical trial of a personalized neoantigen vaccine in late October.
Delsee reported that the participants are nearly set and the working document for the meeting is coming together for the prioritization event with clinicians and researchers to be held on Sunday, September 12.
Please see the lightly edited transcript of the meeting or the recording below for more details.
In Closing: Our Requests
-
Any comments on the discussion documents for the prioritization meeting? (Please comment on Slack or via email.)
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power
Video: Update #14 (4 mins)
Play Video about Kasey Altman Update 14
Video: Q&A + Discussion (39 mins)
Play Video about Kasey Altman Discussion #14
September 9, 2021 & September 16, 2021: Meeting #15 & 16 - Next Treatment Delay, Contingency Prioritization
Meeting notes
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 (#15), especially for those who were unable to join us in person on our last two meetings on September 9 and 16.
Kasey is in San Diego and following a healthy lifestyle while she waits for the delayed start (which has now slipped to late November from late October) of her treatment in a clinical trial of a personalized neoantigen vaccine. The delay is due to a complicated supply chain with many vendors and handoffs, overseen by UCSD. (Please see the notes below or the recording for more details.)
The prioritization event for Kasey’s contingency plans (should she have a recurrence after her personalized vaccine) with clinicians and researchers was held on Sunday, September 12. Two main insights were (1) to develop a strategy that sits on top of specific treatment recommendations, and (2) a consensus on combining an immunotherapy (such as a checkpoint inhibitor) with a treatment targeted on Kasey’s mutations (such as B7H3). (For more on Kasey’s treatment options and the priorities, please see the slide deck that was used with the prioritization panel on Slack.)
Please see the lightly edited transcript of the September 9 and 16 meetings below or the recordings for more details.
In Closing: Our Request
Any thoughts on accelerating the personalized vaccine production timeline?
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power
Video: Meeting #15 (2 mins)
Play Video
Video: Q&A + Discussion (24 mins)
Play Video about Kasey Update 15
Video: Meeting #16 (3 mins)
Play Video about Kasey Update 16
Video: Q&A + Discussion (48 mins)
Play Video about Kasey Q&A 16
September 23, 2021 & September 30, 2021: Meeting #17 & 18 - Treatment Prioritization
Meeting notes
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 (#16), especially for those who were unable to join us in person for our last meetings on September 23 and 30.
As we are in the final weeks of this hackathon, we have focused on the prioritization of treatments for Kasey. Tessa Marcus, David Shalinsky, and Delsee walked through Kasey’s contingency plans (should she have a recurrence after her personalized vaccine) including a strategy that sits on top of specific treatment recommendations, and a consensus on combining an immunotherapy (such as a checkpoint inhibitor) with a treatment targeted on Kasey’s mutations (such as B7H3). (For more on Kasey’s treatment options and the priorities, please see the CancerHacker Lab website under “Updates on Kasey’s Treatments”. There you will find the list of treatment options, the presentation that was used to structure the prioritization panel conversation, the minutes of that conversation, and the summary report. Kasey’s treatment prioritization summary report and minutes of the prioritization panel meeting are attached to this email.)
We also discussed ways we (the hackathon crowd) could help to accelerate the delivery of Kasey’s personalized cancer vaccine, which had been slowed due to issues in manufacturing at one of the vendors in the supply chain. Bill Paseman encouraged a deeper understanding of the process and vendors and contacting them and their suppliers.
Please see the lightly edited transcripts of the September 23 and 30 meetings or the recordings below for more details.
In Closing: Our Request
- Please look for and fill out the survey on the hackathon process.
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power
Video: Meeting #17 (3 mins)
Play Video about Kasey Update 17
Video: Q&A + Discussion (20 mins)
Play Video about Kasey Q&A 17
Video: Meeting #18 (2 mins)
Play Video about Kasey Update 18
Video: Q&A + Discussion (60 mins)
Play Video about Kasey Q&A 18
October 7, 2021: Meeting #19 - Looking Back (Reflections) and Forward (Next Steps)
Meeting notes
Thanks again for your interest in the Kasey Altman hackathon to find the best next treatments for this rare cancer patient. This is our last update (#19), summarizing the discussion in our last meeting on October 7, which both looked back at our conversations (reflections) over these last four months, and forward (next steps for Kasey and future hackathons). We greatly appreciate your attention and support. We have all learned a great deal.
The news from Kasey was disappointing: her cancer has returned, sooner and more aggressively than hoped. The recurrence (a small growth in her primary rectal site and a questionable nodule in her lung) happened five weeks after finishing her treatment, which had included 33 days of radiation. Her next step is surgery at Memorial Sloan Kettering to remove the growth in her primary site in a couple weeks. This will provide tumor tissue for additional genomic testing.
Delsee, Tessa Marcus, and Grace Cordovano noted that the hackathon has prepared Kasey and her family for this moment with a strategy and rational options on what to do next. The strategy that came out of the hackathon’s prioritization panel recommended immunotherapy and targeted treatments (e.g., with B7:H3 as a target, such as the Daiichi Sankyo trial of DS-7300, and BioAtla’s study with AXL). Kasey and her family are considering clinical trials that fit the strategy and the associated eligibility criteria. For example, some clinical trials require that Kasey has a recurrence with a growth of a particular size.
On the same day that they learned about the recurrence of Kasey’s cancer, Kasey and her family also learned that the personalized neoantigen clinical trial which they had been planning on (through Dr. Ezra Cohen at UCSD) for Kasey’s next treatment starting in October had been put on hold. The test of the identified peptides had a negligible response from Kasey’s immune system.
Fortuitously, Kasey and her family had an appointment with an expert in Kasey’s cancer (Dr. Leo Mascarenhas at UCLA) immediately after this development. He helped them think through Kasey’s next steps. He confirmed that one treatment recommendation (a clinical trial from UCLA of a combination of Mocetinostat, an HDAC inhibitor, and Vinorelbine, a chemotherapy drug) from the hackathon prioritization panel was a good option to consider.
Please see the lightly edited transcript of the October 7 meeting and the recordings below for more details. For more on Kasey’s treatment options and priorities, please see the section on the CancerHacker Lab website under “Updates on Kasey’s Treatments”. There you will find the list of treatment options, the presentation that was used to structure the prioritization panel conversation, the minutes of that conversation, and the summary report.
In Closing: Our Request
- If you haven’t done so already, please fill out the survey on the hackathon process from Tessa Marcus. (Tessa will tabulate and share the survey results.)
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power
Video: Meeting #19 (6 mins)
Play Video about Kasey Update 19
Video: Q&A + Discussion (47 mins)
Play Video about Kasey Q&A 19
May 3, 2022: Making the Business Case for Patient Engagement (Kasey Spoke at the Milken Global Conference)
Meeting notes
Kasey was invited to speak at the Milken Global Conference in May, less than two months before she passed away. She was grateful to meet industry leaders, the head of the NIH and decision makers at cancer centers. Here’s her message (starts at 30 seconds til 10:15) regarding the imperative to change the current approach, especially regarding pediatric diagnoses like hers.
November 25, 2022: Vice Media - The use of social media for good highlighting Kasey Altman.
Meeting notes
To the participants in the Kasey Altman hackathon:
I would like to share with you a video documentary that was just released on Kasey Altman, her courageous fight with her aggressive cancer, and her public sharing of that fight on social media.
As you probably know, Kasey passed on the 4th of July.
Vice Media reached out to Kasey in April, asking if they could feature her in a documentary showing the use of social media for good. This intimate story captures Kasey’s spirit and explores the support she received from being willing to put herself out there.
Delsee shared it with me and asked me to share it with you. It’s 22 minutes.
As expected, the key themes I saw in the video were Kasey’s openness and the support of her family and boyfriend.
I haven’t used TikTok or Instagram very much, so I learned something about those media and how Kasey was using them. The surprise is that she got support from them.
Please let me know if you have any thoughts on Kasey, the video documentary, or the possibility of using social media to support cancer patients and direct attention to what cancer patients go through.