I'm back: increasing CA19-9 was accurate indicator of recurrence.

I’m going through the pre-testing required for a clinical trial at Mayo MN now. You may want to check into the trial that is testing the IMM-1-104 pill. You get the trial pill and standard of care chemo. The early results are looking promising. I have the G12R mutation. Good luck.

My husband had a Distal Pancreatomy in July 2024. Many, many complications afterwards but the Ca19-9 results kept going up before he had the surgery. They could not find the tumor because there was so much inflammation. First Oncologist told us she did not think that he had cancer. We finally went for a second opinion and although he was seeing all of the same test results, he recommended the surgery which is when they found the tumor in the tail and body of the Pancreas. They also found cancer in 14 of the 20 Lymph Nodes that they removed.
He had so many complications after the surgery and was so sick that they have never wanted to do Chemo. He has had no treatment at all after the surgery. They do the Ca19-9 test as well as other blood work and CT Scans
every 3 months. They did find innumerable lung nodules and did do a lung biopsy about 4 months ago and found that the pancan was all through his lungs.
His Ca19-9 in November was 870, In February 2000 and in April 8700.
He keeps complaining about pain on his right side going into his back and it keeps him up at night. We went in yesterday and they ordered regular blood work, a CT scan and an x-ray of his hip.
They did not do a CA19-9 test. I was very anxious to see what that number was since it had quadrupled in April
but they told me that test is not reliable. They told us that everything looked good and that the Cancer was very stable. Thay also told us that his blood work looked great.
His Lipase level in November 2024 was 8. Yesterday it was 213. It had not been that high since the month before he had surgery. After surgery, it went way down.

If his Ca19-9 #'s hadn't been so high I don't think they ever would have done the surgery to look for a tumor.
We just kept hearing that they thought it was pancreatitis.

Now with the Ca19-9 being 8700 which is way higher than it was before the surgery and the Lipase being 213,
I find it hard to believe that the Cancer is stable. Has anyone else ever seen this ?

If you don't mind my asking where are you doing this trial. My husband was going to be in the 6236 but did not qualify at mayo mn. He has a 12v mutation.

I’m in the combo rev med 9805+6236 at lower doses than individual (900, 100) so fewer side effects from 6236.

What clinical trials appears to be helpful?

I had a whipple and then recurrence at surgical bed - had SBRT which worked but then two lymph nodes were found to be enlarged. Currently in clinical trial which so far has shrunk the nodes and have had no progression detected anywhere else.

@markymarkfl Thank you for your answer. No metastasis. Only at surgical bed. Two options available - more surgery or VMAT. We are only seeing surgeon who did the original pancreatectomy next week so we do not know if whatever is left of the pancreas needs to be removed or another sliver cut off. VMAT is a form of radiotherapy.

@joiedevivre , something to ask the surgeon about...

I don't know if there's any evidence of metastasis in your husband's case, but even if there are a few/small ones, you might want to ask if total pancreatectomy is worthwhile (soon) in his case.

My case was similar, but in the time after initial recurrence at the surgical bed, mets developed before I even got back on chemo.

The bad part for me was how tight that intersection of the anatomy (stomach - pancreas - jejunum) is after Whipple. It created a situation where radiation was not recommended because of the risk to other structures/organs/tissue, and surgery was ruled out because of the spread.

Over time, the recurrence grew from the surgical bed into a complete blockage of my stomach outlet, which took radiation, chemo, and two surgical attempts to reopen with a stent.

I think earlier removal of the entire pancreas would have prevented this blockage, regardless of the mets. (I think removal of the entire pancreas at first PC diagnosis would have avoided the recurrence altogether, but that's water under the bridge...)

I would push for entire tumors to be removed asap if they're in a spot where they could cause blockages or other serious complications, and let chemo attack the various stragglers in non-critical locations later.

omus1omus23 @mmatunis Could I ask you for an update? My husband has recurrence at the surgical bed and there are signs that there is cancer at the resected part of the pancreas. Margins were good at surgery but it still recurred. He has been on Gem-Abraxane since Feb 2024 (surgery was Dec 2023) and this new recurrence is obviously resistant to the chemo. The onco has recommended radiotherapy and we are waiting to hear from the surgeon who had suspected recurrence even when scans were clear. Markers rose slowly from Nov 2024 even when scans were clear. It is now at 440+.

Four highly experienced Whipple surgeons with vascular surgery skills that take on complex vascular involvement are Mark Truty of Mayo Clinic, Rochester; Douglas Evans of Medical College of Wisconsin/Froedert Hospital in Milwaukee; John Chabot of the Pancreas Center of Columbia Presbyterian Medical Center and Christopher Wolfgang of NYU-Langone Medical Center- both in NYC.