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Tissue is Out for Analysis [Linnea Olson Hackathon]

In our weekly update call (#11) with Linnea Olson, we learned from her that:

• She had her biopsy and started her latest clinical trial a week ago. These were layered on top of a tsunami of other demands in her life that she doesn’t have time for, but must deal with. She is tolerating the clinical trial drugs.

• The biopsy was very successful — they got 4 plugs and 2ccs of fluid. Her tissue from her biopsy has been sent to Caris (for DNA and RNA sequencing) and to mProbe (proteomics analysis), Jess Lin closely paid attention to the hackathon team’s advice on prioritizing tissue from testing, including prioritizing sending data to Caris, whose test is somewhat redundant with Foundation Medicine’s test at this time.

• She has learned from her oncologists Jess Lin and Alice Shaw about two promising clinical trials that are upcoming: a 4th generation ALK inhibitor – TPX, and a tumor-infiltrating lymphocyte (TIL) trial (through Iovance) which will be at MGH in the fall. She may not meet the entrance criteria for either of these clinical trials given her multiple instances of having already been on clinical trials. 

In our roundtable discussion, we talked about:

• How Linnea might use “compassionate use”, “expanded access”, or “named patient” protocols to get access to her desired clinical trials when she doesn’t meet the clinical trial entrance criteria. “It’s appalling that they would lock me and others out when these therapies are so needed by someone who has come this far.”

• What other information Linnea might glean from previous tests. Peggy Zuckerman asked about information that might have come from earlier biopsies that could be useful. Linnea responded that she learned — to her surprise — that the biopsies used for clinical trial research processes return no results to the patient or the principal investigator — only the sponsor. Kimary Kulig added that is why she would refuse all requests for research use of tissue since it will use up scarce tissue and provide no direct benefit to the patient.

• What additional tests Linnea might get. Linnea will check to see whether she has had tests for PDL1/PL1 and other immunotherapy responsiveness. She will also check to see whether she has had or could get tests to see whether TIL will be useful. Kimary Kulig and Ally Perlina recommended that Linnea request another blood biopsy to monitor progress and add more information on variants, especially post her cancer’s recent aggressiveness and the new treatment. 

• How we could organize a scan and radiology review of Linnea’s many scans and radiology. We have several pathologists already engaged in the hackathon and can recruit more with Devon Snedden’s help through the College of American Pathologists. Kimary Kulig will check again about interest in catalyzing a group.

• How the hackathon is exploring how far we can push on many fronts.

• How hard it is to donate your body to science. Lila Joseph mentioned the “rapid autopsy”.

You can see the recording of our update conversation (15 minutes) below, as well as see the 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).




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