In our weekly lightning update meeting on the Linnea Olson Hackathon on Friday we learned:
Scan and Biopsy: Linnea will be getting a scan on Wednesday (May 12) and will have a scan review the following Monday (May 17) and a discussion with her oncologist about getting a biopsy.
Data: Ciitizen has Linnea’s images and uploading was finished over the weekend. It’s a lot of scans. There are 5,000 pages. Linnea can give you permission to access the data if you are interested, and there is an API for those who want to connect through software. Ciitizen will also be creating a summary report with a timeline. Terry Cardillo is a lung cancer expert working with Ciitizen part-time, and he will be taking the lead on the report and clinical interpretation for Ciitizen. The report should be ready this coming week. We will have a 5-minute walkthrough next week.
Additional Test: Linnea spoke with Certis Oncology, which is willing to develop a mouse model for Linnea gratis if they can get fresh biopsy material.For more details from the update, you can see and hear the update recording here (13 minutes), and the notes and recordings of the previous weekly updates.
After the formal recorded session Friday there was a roundtable discussion. Here are notes from Linnea:
Last Friday our fearless leader–Brad Power–joined us from MGH, where he was getting a Mohs skin surgery procedure done. Now that’s devotion. He had to leave after fifteen minutes which left me at the helm–feeling a little hapless. Brad is an excellent host and knows how to keep the conversation flowing. However, we managed.
Of particular interest to me was an in-depth conversation regarding immunotherapy and hot and cold tumors. ALK positive cancers are generally considered cold and thus far have shown little responsiveness to immunotherapy. I had fantasized back when I was first tested for PDL-1 in 2012 (negative) that there might be a way to ‘seed’ a tumor. Evidently a similar concept is now being explored–which gives great hope to those of us with cold tumors. So much of survival is just hanging on until the next promising treatment comes to trial.
We also discussed my oncologist’s feelings regarding the hackathon (hands off but supportive) and how each of them might respond to treatment suggestions from others. I assured the group that I have agency but I also know that I am currently coloring outside the lines. Thus it was suggested that perhaps I shall require advocates when it comes time to present options to my treating team.
Once again I was overwhelmed by the generous offers of assistance and inquiry. And I would like to stress that I am learning so very much by taking part in this process—a deeper dive–rather like the mechanic who last week took me into the shop and showed me the underside of my car. I needed a new exhaust system and this is the first time I have been offered an opportunity to actually look underneath my car. So simple but also so clarifying. And for me, quite similar to the hackathon. One example–my imaging is now accessible to me–in full. Prior to this I have seen the occasional scan but have never had access to all of it. I am hoping we are helping to forge a path for a greater level of engagement in healthcare–that this will become the norm.
Thank you!
At the request of Grace Cordovano and Glenn Sabin, I have posted a list of the Linnea Olson participants with affiliation and email addresses on the Slack.
Please also check the Slack for further background, discussion, and ongoing updates.