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I'm back: increasing CA19-9 was accurate indicator of recurrence.
I had posted back in mid-November that my CA19-9 levels had been increasing and I was experiencing back pains at night, but there was no detectable circulating tumor DNA (ctDNA). To re-cap, I was diagnosed with borderline pancreatic cancer in July 2022 and had 12 rounds of FOLFIRINOX followed by a Whipple surgery at the end of January 2023. Due to the increasing CA19-9 and back pains, my oncologist ordered a PET scan at the end of December which revealed "areas of concern" in the surgical bed and in several mediastinal lymph nodes. My primary oncologist recommended either (1) restart chemotherapy or (2) wait and see. I got a second opinion from a second oncologist and decided at the time that I would wait in see. The ctDNA was still undetectable and evidence of recurrence was not definitive. It was also suggested that a more informed decision on treatment options could be made after recurrence was detected and we knew where the recurrence was located (local vs metastatic among other things). I was also wishfully thinking that maybe the increased CA19-9 and back pains and stomach aches I was experiencing could be due to pancreatitis, an ulcer or anything besides recurrence. That was wishful thinking. A CT scan on January 31 confirmed local recurrence at the site of surgery. I am now scheduled to restart chemotherapy next Tuesday. The decision for chemotherapy as opposed to radiation was based on concerns for possible metastasis to distal sites. I will be receiving Gemcitabine, Cisplatin and Durvalumab (an immune checkpoint inhibitor). This regimen has been shown to have some efficacy in treating biliary tract cancers, which is what my cancer was re-diagnosed as following pathological analysis of my resected tumor.
In retrospect, would I have done things differently? What I know now is that the increase in CA19-9, which started back in July (it first went from 7 to 28 to 72 to 120 and is now at 157 six months later), was in fact due to recurrence. I also now know that my back pains and stomach aches were probably due to the recurring cancer pressing on nerves, but also possibly due to stress and anxiety that I had been experiencing during the time of uncertainty. I did meet with a cancer therapist to address some of that, which was very helpful. I also now know the ctDNA test was not as sensitive as CA19-9, despite my and my care-giver's expectations. All together, I think I actually have taken the right course. I had six months with some discomfort, but mostly lived my life pretty fully. Restarting chemotherapy is going to be a drag, and there is no guarantee that it is going to be effective or make me feel any better. I will probably feel worse. Are outcomes going to be any different had I started treatments six months ago? We will never know. I can only hope for the best! Thanks for listening. Maybe what I describe will be of some use to others who may be going through the same thing.
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I have heard of Dr Christopher Wolfgang
I am keeping his name in my notes
Still trying to stay with my oncologist's treatment for now but thank you for his name that I do already have
A name for the future possibly
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2 Reactions@ashley2235 , I'm glad to hear you're getting the frequent CA19-9.
I get messages every now and then from Natera saying my ctDNA test was declared "not medically necessary" by my insurer, but my care team has always found one way or another to get it reimbursed or absorbed somewhere else in the system.
I had asked Natera about this before my Whipple, and they made it sound like the self-pay cost would not be astronomical if I had to go that route. Seems like it was about $250 each time, iirc, but I don't know if they had a (much) higher price for initial construction of the test.
I recently had another genetic test (combo of blood and tissue) with Tempus. The blood collection kit they sent to my house had forms for patient financial assistance if necessary, and I think they said the basic tests would never likely exceed $100 patient cost.
So... there may be affordable options if you contact the companies directly.
However, given that CA19-9 tests are cheaper and signaled my recurrence before ctDNA tests did, that becomes a factor in the overall value equation.
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3 ReactionsI'm hoping chemo holds the bad cancer off too
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2 ReactionsFour 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.
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6 Reactionsomus1omus23 @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+.
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1 Reaction@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.
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2 Reactions@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.
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1 ReactionI 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.
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3 ReactionsWhat clinical trials appears to be helpful?
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1 ReactionI’m in the combo rev med 9805+6236 at lower doses than individual (900, 100) so fewer side effects from 6236.
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