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What exactly is NED (no evidence of disease)?

Pancreatic Cancer | Last Active: 4 days ago | Replies (20)

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@stageivsurvivor

The patient that underwent the 37 rounds of Folfirinox is Camille Moses. She is an 11 year survivor but still has neuropathy. When I advocated for the aggressive chemo with Folfirinox, my oncologist did the first six cycles with Folfirinox. It was the original formulation used between 2011-2018 that was 20% stronger in its components. Camille had the same. But with me, the next six removed the oxaliplatin and irinotecan and were considered resting cycles. My tumors were still shrinking significantly on just the 5-FU with Leucovorin. After the six resting cycles, it was back to full dose Folfirinox. This alternating dosing was continued until 46 cycles in total were administered-24 of Folfirinox and 22 of 5-FU/Leucovorin. It is likely the “resting cycles” were the reason why my neuropathy resolved over several years.

At the moment, ctDNA is only recommended for monitoring colon cancer in the solid tumor realm. The American Society of Clinical Oncologists has working committees that review clinical studies and the technical issues were overcome so that it achieved the reliability the working committee felt was sufficient. There are working groups looking at other solid tumor cancers to monitor with ctDNA and one of those is pancreatic cancer. I am on my way to Chicago tomorrow for the semi-annual meeting of ECOG-ACRIN and one of the meetings I will be participating in is the GI Cancers Committee of which I am a research patient advocate on.

In the past meeting, an update was given on where things stand with improving the sensitivity of the ctDNA assay. I will inquire during the committee meeting of the pancreatic cancer oncologists who are on the committee if there has been an update from the ASCO. That professional organization will also be meeting in Chicago the first week of June when an update may be presented. I’ll post if I hear anything new.

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Replies to "The patient that underwent the 37 rounds of Folfirinox is Camille Moses. She is an 11..."

Thank you to all who have commented on ctDNA tests. In summary, I think I am hearing to trust but verify.
My first Signatera has returned 0.00. I am awaiting my current CA19-9.
If it has dropped further from 50 to normal range, and next scan shows nothing-would you wait until next round of tests to request maintenance chemo?