In the weekly update meeting on the Linnea Olson Hackathon on Friday we learned:
Linnea is interested in complementary therapies (e.g., adjuvants like metformin, nutrition), as well as the therapies that are targeted at molecular variants. Will LaValley explained the role that these additional therapies can play in controlling cancer.
This coming week on Sunday (May 23) Linnea will be getting a scan and will be meeting on Thursday (May 27) with her oncologists (Dr. Lin and Dr. Shaw), where she will raise her interest in getting a biopsy.
The proteomic testing from SomaLogic needs a form for sharing results (an IRB). Grace Cordovano will help resolve it with Brad offline this week.
Linnea will follow up with Natera to get their blood biopsy.
Linnea went to Mercy BioAnalytics to learn about their blood biopsy, which is focused on early detection, to date for ovarian cancer, but they are interested in going into lung cancer.
Kimary Kulig will look into other testing companies that may be more mature that also use “extracellular vesicles”, or EVs.
Gail Thornton believes there is potential for an article on “Tissue is the issue”. One angle might be a letter to the editor in a top tier newspaper, calling attention to the issue of tissue and patient rights, and another angle might profile the purpose of the hackathon, of advocacy in treatment, and helping the patient navigate, for something like the New York Times Be Well or a top tier reporter who covers healthcare. Please let us know if you have any contacts or suggestions.
You can see the recording (11 minutes) of the formal part of this meeting below.
In the roundtable discussion (a half hour), we focused on helping arm Linnea with the benefits of getting a biopsy for her conversation with her oncologists on Thursday.
Here are my notes from that conversation:
Linnea: I see asking for a biopsy as taking back my agency and power.
Grace Cordovano: You’re rare. In your conversation, you should position the biopsy within the context of your life, not a clinical decision.
Kimary Kulig: This is an elective procedure. Can you get reimbursement?
Grace: You can get a preview of whether this will be covered by talking to your insurance company.
Will LaValley: When and where was your last biopsy?
Linnea: My last biopsy was a year ago, but there was no return of information. The tissue went to Japan. There have been two failed treatments since then. Prior to that my previous biopsy was two years ago. This is the longest time I have gone without a biopsy.
Will: Therefore there has been evolution, and you want an update on the molecular profile.
Brad: Are there super technologies (robot-assisted) for doing biopsies at other institutions that would reduce the risk?
Kimary: Be sure there is tissue left for yourself.
Brad: Can you ask the pathologists to gather more tissue than usual?
Ricardo Salgado: The tissue access challenge is a good topic to expose.
Kimary: What should we do with the tissue? We should add IHC testing. Please put all ideas on the Slack. Personalis is another option.
Brad: We can discuss next Friday what to do with the tissue and determine priorities.