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What exactly is NED (no evidence of disease)?

Pancreatic Cancer | Last Active: 5 days ago | Replies (20)

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@markymarkfl

Which ctDNA tests is everyone using?

FWIW the Grail/Galleri cfDNA (cell-free DNA) blood test claims to detect 50+ types of cancer at a microscopic level, before imaging can typically detect anything. The Signatera ctDNA test is customized to look for "Microscopic Residual Disease" (ctDNA) specifically from tumor tissue you had removed.

I had open Whipple in June 2022 after 6 months of FOLFIRINOX. All intra-op and post-op pathology clean, MRI clean, CA19-9 good, Galleri and Signatera all negative in the first 4 months after surgery. About 3 weeks after the Galleri and Signatera tests, MRI spotted a 2 cm tumor recurrence at the original surgical site.

Long-story short: The ctDNA and cfDNA tests are not gold standards by any stretch of the imagination. It was the slowly rising CA19-9 level that we should have reacted to as the first hint! You can get repeat CA19-9 testing done at some walk-in labs or Rx-only labs with a "serial testing" prescription from many doctors for about $25 per test, if your onco is not testing super-often. (See mdsave.com for one option.)

My onco team had no comment about the Galleri test, but told me Signatera was not exceptionally good for pancreatic tumors. "If Signatera > 0, you definitely have cancer. If Signatera = 0.00, you might still have cancer."

In my case, the Signatera ctDNA test finally went up to 0.14 around the same time imaging detected multiple mets in my abdomen, with CA19-9 around 600. Last Signatera (2 months ago) was back down to 0.00, and my CA19-9 has come down to 158 after 6th round of chemo (Gemcitabine + Abraxane + Cisplatin). But we know from imaging all my tumors are still there.

So, I'm thrilled to hear @stageivsurvivor is doing well, and I am now in your camp of agreeing with the need to beat this monster into total submission. (I read long ago about a patient who had undergone around 37 rounds of FOLFIRINOX. Ouch!)

On top of that, don't underestimate the value of cheap, easily available CA19-9 testing. Stay vigilant!

P.S. Of my 12 FOLFIRONOX treatments, the hair loss wasn't bad at all (60 y/o male here), but we cut the oxaliplatin by 20% for the last 4 treatments to address the peripheral neuropathy, which persisted for about 6 months after the last treatment.

On my new treatment, the cisplatin was said to cause a little less than neuropathy than oxaliplatin, but the Abraxane is worse than both (for me) neuropathy-wise, and it has also claimed almost every hair on my body, but the overall cocktail seems to be more effective for me (in terms of CA19-9 response) than the FOLFIRONOX was. FWIW, I have the ATM mutation that allegedly responds well to platinum.

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Replies to "Which ctDNA tests is everyone using? FWIW the Grail/Galleri cfDNA (cell-free DNA) blood test claims to..."

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.