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What exactly is NED (no evidence of disease)?

Pancreatic Cancer | Last Active: 6 days ago | Replies (20)

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NED is the term used that replaces “in remission” to better reflect what is going on. When a patient is recommended to take a certain number of cycles of chemo thought to achieve NED, that number is not from clinical studies but a consensus of oncologists whose opinion is that number of cycles is sufficient for most patients to achieve NED while keeping side effects tolerable. Peripheral neuropathy is one of those side effects of concern.

The oncologist looks to knock down the disease level so low that it is not detectable by current imaging instrumentation such as CT, MRI or PET. This means there is still likelihood of minimal residual disease (MRD). The hope is that one’s immune system is robust enough to withstand a challenge or not weaken to keep any micrometastatic disease or circulating tumor cells from progressing. There is now a more sensitive method to detect MRD called ctDNA. It has been in use for a number of years to monitor leukemia and lymphoma. In the past few years, CtDNA has been moving into the solid tumor realm and is now approved for colon cancer MRD surveillance/reoccurrence. It is under clinical studies for breast and pancreatic. I have been having my ctDNA measured since 2014 when I entered a clinical trial for maintenance monotherapy after treatment for stage IV disease.

My goal in chemotherapy was not to buy more time but longevity if not cure. And even though I was dealing with metastatic disease to my liver, I advocated for going well beyond 12 cycles of Folfirinox. I did not want to reach “NED” only to hear within the next several years the disease resurfaced and was now more aggressive and likely not survive the reoccurrence. This is why I advocated to go well beyond 12 cycles of Folfirinox. I did 24 cycles and 22 cycles of 5-FU/Leucovorin. They were alternated every six cycles to lessen the effects of peripheral neuropathy by oxaliplatin. A combined total of 46 cycles were administered and at the end point, it was likely all that remained of the tumors that could be visualized was scar tissue which over the years was cleared by immune system cells. ctDNA has been zero and I have since been designated cured.

So if one is able to handle additional rounds of chemo, you need to self-advocate and have a discussion with your oncologist on how to improve on going beyond NED to ensure there is no remaining MRD. My decision to push in getting the extra cycles has led to 11 years survival and the neuropathy resolving.

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Replies to "NED is the term used that replaces “in remission” to better reflect what is going on...."

@stageivsurvivor Thank you for such a thorough explanation. I just finished cycle 26 of chemo. We stopped the Oxaliplatin after 12 cycles to minimize the neuropathy and I have since been on FOLFIRI. CA19-9s are ~16 now and have been since Nov. We intend to continue this regime until it quits working.

You are a model of what can happen with the BRCA gene, but none of this would be possible with the ATM mutation, which I have. After only 6 months of GAC chemo with I believe only the abraxane reduced to 80%, my CA19-9 numbers are starting to slowly climb upwards every 2 weeks and my basic bloodwork (monocytes, lymphocytes, etc.) are starting to go haywire. I’m still on chemo, but hoping to get into a clinical trial now. From everything I’ve read, I don’t see any long-term success yet for those with ATM gene mutation (I also have KRAS12-D and TP53). It would be great if in profile we could put our mutations which would make our input more pertinent to others.