Wow! Congratulations! I'm now at 70 after 10 rounds of Folfirinox. I'm hoping to reach normal range, while realizing that scans show the tumor is still there and I'm not cured or NED by any standard. In my case, my oncologist is discussing maintenance chemo, depending on what new scans and CA 19-9 show. I would be interested in sharing ideas on that. He mentioned three possibilities--Lynparza (olaparib, a PARP inhibitor, which is approved for BRCA mutations but not my ATM mutation), continued 5FU pump (but no other chemo drugs), and some other oral med (my notes are unfortunately sketchy). No radiation treatment because of the small-volume lesions outside of the main tumor, and no surgery or Whipple because of blood vessel involvement. What has your MD discussed with you?

Before distal surgery I was at 91 and after surgery I was 8. Following 12 sessions of chemo I’m at 6. My drs tell me nobody at 0. I feel fantastic and am back to working part-time! I had metastasis to 1 lymph node out of 25 that were tested. CAT scans and symptoms must be paired with your cancer antigen. I was also with the Hoag Medical PANCAN support group and we did have at least a couple of people who were stage 4 and had antigen in the 2000 range. They were in clinical trials and were told their tumors were no longer detectable in scans so even a high antigen paired with clinical trials can also mean you are “cancer free”.

@katiegrace ,

My CA19-9 was at 677 when I began chemo (Gem+Abrax+Cisplatin) for the post-Whipple recurrence. It came down fairly fast, hovered in the low-mid 40's for a couple months, then teased me with a 33 two weeks ago (ULN < 35 at my lab) before going back to 43 yesterday at my 20th round of this regimen. Even my Signatera ctDNA tests still show no cancer detected.

I take it happily but with a grain of salt, knowing that my scans continue to show live tumors.

Celebrating NED status prematurely after Whipple (3 months after surgery with clean margins, clean lymph nodes, CA19-9 of 12 and 3 ctDNA tests clean), then discovering the recurrence 6 weeks later on MRI was a real downer and a reality check on the nature of this disease.

What is means for me is that I have to keep looking into clinical trials that I qualify for and can realistically participate in. Having all the right "conditions" to qualify for a trial is only one part. Being able to travel if required is another, and then the time factor -- how long will it actually take you to get in, and what if that delay is too long?

After 9 months on my current chemo, there is discussion of whether it has run its course (disease becoming resistant) or how much more neuropathy and fatigue I can take before jumping to a maintenance therapy or new treatment. It's a challenge getting all the clinical trial ducks in a row so I can make the switch quickly if the right study opens up. Being pre-enrolled as a patient at multiple centers is somewhat helpful with that.

I guess it's worth enjoying the freedom, but having a backup plan and a lot of "sleeping with one eye open." 😉