In our weekly update call (#12) with Linnea Olson, we learned from her that — despite trepidation going in — she is tolerating her latest clinical trial therapy (started June 10) well — There have been no side effects. But she is also not perceiving any benefits, and she is feeling poorly physically — breathing is hard and she has pain. It’s difficult. The concept of death is increasingly present. She hopes the trend reverses. She is also struggling with some personal issues. We are waiting on the reports from the tissue biopsy at Caris and mProbe.
We spent most of our time talking about the candidates for Linnea’s “review board” — the people who we would like to invite to help her choose her best next treatment and prioritize her treatment options.
Ricardo Salgado kicked off the discussion of Linnea’s review board with a question about how it will work and who will be on it.
Kimary Kulig suggested we should look for “Phase 1 trialists” (a term I hadn’t heard), experts in lung cancer who are leading relevant clinical trials, which we might find by searching on clincaltrials.gov.
Kimary added that we should organize the review board candidates by specialty, e.g., research oncologists, pathologists.
Ricardo reminded us to look at Emily Venanzi’s ALK+ clinical trials lists for names in the Slack.
Rene Roach recommended we add Stephen Liu to the list.
Will LaValley encouraged us to prepare and share in advance documentation like clinical notes with the review board.
Sophia Cornew said that Ciitizen has put together a list of solid tumor clinical trials from clinicaltrials.gov. And their files and reports could prepare the review board. “ECOG Performance Status” (are you up and about for greater than 50% of your day) will make a difference on which trials Linnea will qualify for.
Jeff Waldron suggested that Linnea get the results of any Mass General molecular tumor board as input to the review board.
Linnea commented that she has never been invited to her molecular tumor board. There seems to be a policy that no patient is ever in the molecular tumor board.
Since the meeting yesterday Kimary (fast mover!) developed a first draft of the review board candidates, and I added all the names that I had received from Ricardo, Linnea, and others.
Please review and edit the review board candidates here.
I have also drafted a working document on Linnea’s treatment options, which lists the treatments I have heard about as a start. I incorporated suggestions from Emily Venanzi and others.
Please review and edit Linnea’s treatment options here.
You can see the recording of our update conversation (15 minutes) below, as well as see notes from previous weekly meetings and recordings (in related posts).
As always, please review the ongoing online conversation and leave a comment at our online forum (on Slack).