CA 19-9, sensitivity and responsiveness to treatment

Sitting in the chemo chair getting GAC #30 as I type. Just got my CA19-9 result a few minutes ago. All the data I have from one lab is in the attached graph.

Data in short:
-- GAC worked better for me than Folfirinox.
-- Reducing Abraxane aligned with increasing CA19-9.
-- Missing a treatment aligned with increasing CA19-9.
-- Restoring full Abraxane aligned with two small decreases in CA19-9.
-- Reductions of CA19-9 after missed Tx (131 -> 129 -> 122) not as sharp as last time at similar levels (158-> 105).
-- Upward slope after missed Tx not quite as steep as slope between recurrence suspected & confirmed.
-- CA19-9 will rise and tumors will grow quickly when off treatment.
---- Warrants consideration if washout period is required before a clinical trial.

Perception:
The slower response to full doses after missed Tx _seems_ to suggest some resistance is developing, or at least less control with current dose. Aligns w/ tumor growth shown on recent scans after the missed Tx.

Click on graph to enlarge.

@markymarkfl Thanks for sharing your CA 19.9 graph! You prompt me to update and enhance a similar but less sophisticated graph my son generated for me a few months ago. It's important, given CA19.9 levels' significance as a determinant/indicator for diagnosis, treatment and patient care planning.
And thank you again for generously giving your valuable time to help so many others fight this nasty disease.

I hindsight, I wish my CA19-9 reading of 33 from a different lab had triggered more action sooner. My PCP and I assumed that because it was still below ULN (< 35) and my Signatera/Galleri DNA tests were negative, that everything was still OK. We thought the higher reading (from 12 a week after Whipple) was just a return to normal or a slight elevation due to inflammation while dealing with the dietary upsets during recovery.

My chemo regimen of Folfirinox was "TNT" -- Total Neoadjuvant Therapy -- a full course before surgery, and none after, as long as there was no evidence of disease.

As it turned out, that reading of 77 was the same day as MRI identified a 1.3 cm mass at the original surgery site, just 3.5 months after a clean MRI. EUS/biopsy the next day found no malignant cells (hiding somewhere, or difficult to reach because of the post-Whipple anatomy). But the surgeons who performed the biopsy were pretty sure that if malignant cells had been present, they would have gotten some. Instead, it was diagnosed as inflammation due to pancreatitis. The tumor review board recommended repeat CA19-9 and MRI 6 weeks later.

The Med Onc didn't recommend starting a "preventative" chemo while waiting. He said something like it was an option, but "probably wouldn't change the outcome" and that's what we did.

I asked if a PET scan would help confirm malignancy, and was politely brushed off. I wish I had demanded that anyway, because now that the tumor is still there, my first PET scan in 2.5 years clearly shows FDG uptake there. PET on the suspected recurrence might have led to at least a laparascopic biopsy the same week, which could have gotten the ball rolling on treatment 6 weeks sooner.

By the time follow-up CA19 reached 277, Signatera came back positive and MRI showed continuous growth. It was declared to be an official recurrence by then, with RadOnc saying it was not treatable with radiation at that location, Surgeon saying he could remove it if I did 3 months of chemo demonstrating control, and MedOnc recommending immediate startup of a traditional chemo (GA) that was generally less effective than the Folfirinox that had already turned in an underwhelming performance before Whipple.

That all bumped into Christmas 2022 holidays, which I didn't want to ruin my vacation or disqualify me from clinical trials. The holidays delayed my getting outside opinions by a few weeks, but I was able to get two expert opinions in the first half of Jan 2023. A CT scan performed at the second one identified a distant met in my abdomen, which ruled out an immediate surgery. I asked them to review my previous MRI from the other institution to see if their CT finding was visible on it. Since they knew exactly where to look, they did, and said there were indications it was possibly already growing there, but hard to see, and not obvious if you weren't already looking there for it.

With all of that said...

It's apparent the rising CA19-9 was an early and reliable indicator of what was going on. While it can't be used as a general diagnostic, in the patient population with previous PC and a good history of CA19-9 readings from the same lab and responses to previous treatment, it should be tested often with results taken more seriously than they often are.

As far as immediate treatment was concerned: With a reading of 33 from a different lab, I would not have done anything different other than asking my main lab to reinitiate more frequent testing. Now at Stage-IV with at least 6 tumors we're tracking on MRI, CA19-9 hitting 132 while Signatera remains negative, I've learned that the DNA tests for PC providing "no evidence of disease" are basically that -- no evidence. Multiple sets of eyes are good, and CA19 was the cheapest, least invasive, and earliest indication of my recurrence.

If I had been on some kind of adjuvant therapy after Whipple, the disease might never have cropped up. Given how effective the GAC has been in my first 12 months on it, it might have killed the recurrence before it spread.

Absent that, starting the GAC when CA19 reached 77 and MRI showed a 1.3 cm mass might also have prevented the spread. Despite no other "evidence" (EUS/biopsy + negative Signatera) of disease, starting chemo at that point probably would have made sense -- basically just equivalent to a delayed start of adjuvant chemo. But as mentioned, laparascopic biopsy and/or PET could have broken the tie and gotten me into surgery immediately. Since I was already diabetic (insulin-dependent) and dependent on enzymes from the Whipple, I would have opted for a total pancreatectomy. With no evidence of cancer elsewhere at that point, I might be cancer-free now instead of Stage-IV.

It's not a comment it's a question, my husband has been diagnosed with pancreatitis cancer and is not taking any medicine. The problem is he is drinking too much and having too much sex when he is in pain, he is having painful erection what must I do

@nyonifara, this sounds like a challenging situation for you.

Pancreatitis is inflammation of the pancreas. Heavy alcohol use can cause and worsen pancreatitis. Long-standing inflammation in the pancreas is a risk factor for cancer of the pancreas.

Has your husband's pancreatitis recently progessed and he has also been diagnosed with pancreatic cancer?

I’m a bit weirded out by this conversation, my CA 19-9 is at 1,000 but that’s a drop over3 months from 45,000.
I thought that was great news but it sounds like it is still awfully high? The reference range does say 0-35 U/ml.

That is an absolutely wonderful response and another reason (in addition to your BRCA2-positive status mentioned in the other thread).

The only data fresh in my head is from this video by Dr. Katz of MD Anderson:

He makes a rather grim remark about CA19-9 over/under 1000 at the 4:03 mark in that video. It's important to understand that from a historical and realistic perspective, but also important to note that this is from a presentation given in 2020 citing data from a study published in 2013 which collected data from years prior to that, so the overall basis of info might be 15 years old.

A LOT has changed since then, but not so much with the Standard of Care. If you're Stage-IV, surgery is most likely out of the question. The SoC drugs (Folfirinox or its individual ingredients, and Gemcitabine/Abraxane/Cisplatin) are pretty much the baseline options. Onivyde is a new variation on the irinotecan component of Folfirinox, and PARP inhibitors are the recently approved category of drugs for PanCan patients with BRCA1/2 and PALB mutations.

Every patient is an individual who responds differently -- statistics be damned! You seem to be doing very well for your condition. In order to keep it that way, I hope you are exploring every option possible for clinical trials beyond the SoC that will keep you that way. The trials can take a long time to get into, so proactive work in advance will have the pipeline filled with options by the time you need them.

Do all you can to stay healthy in every respect while doing that research (and hopefully enjoying life as much as possible), including frequent testing and imaging so you know when it's time for a treatment switch, and you'll have a great chance of beating the published odds.

Wishing you all the best!