Pancreatic cancer relapse

Thank you. I made some the other day with fresh ginger. I'll put a bit of honey and lemon in it and sip throughout the day.

You are clearly plugged in to what works for you *and* plugged in to a broader range of healing methods, which I admire and salute. I doubt that I can add anything you've not thought of, but in case any of this is useful:
-- Eating small pieces of crystallized ginger helped me.
-- Watching classic movies (1930s-50s) helped me; you can find a lot on YT, although generally not the best-written / best-acted ones, most of which are still under copyright. (One that isn't: My Man Godfrey, a screwball comedy with an egalitarian under-mssg.)
-- Watching vids of animals on The Dodo's YT channel helped sometimes.
-- Watching various vids from PBS (docus as well as multi-part dramas) -- $5/mo. to join my local station and get access to its library.
-- Reading some of the light features in The Guardian (Pass Notes, You be The Judge, Blind Date).

Best wishes.

Terrific suggestions!
Right now watching all seasons of Call the Midwife. Also love Father Knows Best for comfort.
I'm looking forward to soon watching old Christmas movies and the older Little Women. Great things to do when you're fatigued and nauseous. I try to keep chemo week easy and light. The following week is for visiting, shopping and laundry. I think the ginger chews you mentioned will be very beneficial.
Thanks so much for your thoughts!

Hi,
I am reading alot of posts lately and wanted to write in and see if anyone had the experience my husband is going through. Sept. 2022 diagnosed with Pancreatic Cancer (head of pancreas) and went through 8 cycles folfirinox neoadjuvant chemo. Whipple Surgery performed on Feb. 15 2023. Recovery went well and margins were clear, no lymph nodes infected. Staged at IIB. May 2023 started on 4 cycles of post whipple folfirinox chemo. CA-19 has been great up until Sept when it rose to 60 and then 212 4 weeks later. CT Scans are clear and no signs of metastatic disease. We saw our oncologist today and he is scheduling another CT Scan in 4 weeks and was not very encouraging on next steps (almost like wait and see what comes on the scans in order to determine how to treat). We have contacted Mayo clinic for a 2nd opinion and they have all scans/notes/etc. and we expect to hear from them this week. Has anyone experienced a rise in CA19 and clear scans? what did you do next? Thank you so much!

Hi @mjennison ,

This sounds VERY much like my story, except it was 12 cycles of neoadjuvant Folfirinox on a Stage IIb PDAC tumor in the head of my pancreas. Whipple margins were clear and all lymph nodes were clear.

I had no adjuvant chemo after Whipple, but close monitoring with MRI, CA19-9, and ctDNA tests Signatera (twice) plus Grail/Galleri all showing no signs of recurrence.

But... rising CA19-9 was actually the earliest indicator something was going on. It rose from 12 to 33 to 77 (with the ctDNA tests still negative) before a second MRI detected 1.3cm mass at the original Whipple site. Even an immediate EUS biopsy that weekend failed to detect cancer, but waiting 6 more weeks (without chemo) for the next MRI was part of my disaster: The cancer was definitely back and appeared (on later review) to have metastasized elsewhere in my abdomen during that interval. CA19-9 was around 277 by that time.

So, my first recommendation is DO NOT STOP THE SYSTEMIC CHEMO WHILE YOU ARE EVALUATING OPTIONS! This may control the disease and limit its spread, but the CA19-9 increase is concerning.

Getting the second opinion ASAP is also good. Ask Mayo (even if you don't get to consult with an oncologist or surgeon there right away) if they'll at least test your CA19-9 in the interim. If not practical, see if your current oncologist can order a re-test at the 2-week mark. This will give you an idea how fast things might be changing, and also more insight into whether the adjuvant Folfirinox is working. And another CA19-9 test with your upcoming CT.

When you had the Whipple, the post-op pathology report might have examined what effect your neoadjuvant chemo had on the tumor. In my case, it was scored as a 2 ("partial response") on a scale of 1-3, which means there might have been room for improvement with a different chemo drug.

I was not able to resume systemic chemo until my CA19-9 hit 677, which was 5 weeks after the definitive/confirming MRI (12 weeks after the suspicious MRI and negative biopsy). Unfortunately there was more evidence of spread by that time. Fortunately, my new chemo regimen was different (Gemcitabine + Abraxane + Cisplatin) which has brought my CA19-9 back down to the low 40's with one reading of 33 and somewhat stable control of tumors on imaging.

Another recommendation is to check with your Whipple surgeon to see if enough tissue was saved to do the Signatera (or similar ctDNA) test. If they didn't do that already, they can send the tissue to Natera, who will build a special blood test that looks specifically for circulating tumor DNA matching your tumor. You can use that to check for microscopic levels of recurrence and somewhat gauge the effectiveness of your treatment.

For now, you're right to be concerned and have your second opinion scheduled. Get all your options lined up regarding third opinions if you think you might want them. Delay is your enemy.

I'll try to elaborate more on this in the morning.

Hi,

What markymarkfl said!

I am not a medical professional, but my sense from reading thousands of threads with stories of pancreatic cancer, is continuing chemotherapy is essential to killing those cancerous cells that are in your system.

My usual recommendation is to relocate to be close to a center of excellence - move there - their understanding of the disease is better, their tracking systems are better, their oncology is better - it's not just their surgical team, it is the entire team.

I'm not in that situation, as I haven't had the Whipple (don't qualify due to tumor location). My oncologists told me that some metastases are actually very flat lesions. Because they're not three-dimensional, they don't show up on CT scans. On my last scan in September, my liver and spleen were described as "unremarkable," yet we know that in April, during the staging laparoscopy, the surgeon saw at least one flat lesion outside my pancreas. I'm not a medical professional, but that might explain why the scans are clear but the CA 19-9 indicates activity. You could add that to your list of questions for your MDs.

NYU Perlmutter Cancer Center in New York City has Dr Wolfgang who is considered the world expert on Whipple and has done over 1500 of them.

To clarify here, Dr. Christopher Wolfgang is an outstanding surgeon but not the world expert. In the US, there are four outstanding Whipple surgeons who take on the more complex vascular-involved cases because they have vascular surgery skills having trained as liver transplantation surgeons. They are Mark Truty at the Mayo Clinic in Rochester, MN; Douglas Evans of Medical College of Wisconsin/Froedtert Hospital in Milwaukee, WI; Christopher Wolfgang at NYU-Langone in Manhattan and John Chabot who has done over 2,700 Whipple procedures in his long, storied career. It was Dr. Chabot that opera star Luciano Pavarotti selected to do his Whipple at Columbia Presbyterian Medical Center-the site where the Whipple was first performed. It says a lot when Pavarotti having a jet at his disposal and money to travel anywhere in the world selected John Chabot to do his Whipple.

Another top Whipple surgeon who deserves mention is world-renowned Daniel Cherqui who was recruited from Paris in 2010 to come to Weill Cornell Medicine to build the Hepatobiliary Department offering expanded liver transplantation and Whipple procedures. Cherqui was one of the three pioneers to develop live liver donor transplantation via laproscopic method for which he is noted. In 2012 when he performed my Whipple surgery with vascular involvement, he didn’t hesitate to continue the surgery. It required a portal vein resection. And despite the tumor not only having penetrated my portal vein, it had been seeding my liver with metastatic cells that first became detectable one week post surgery. At the time he performed my Whipple, Cherqui had done over 1500 Whipples and is now in the neighborhood of where Chabot is.
https://hbsn.amegroups.org/post/view/professor-daniel-cherqui-my-experiences-with-laparoscopic-liver-resection

These posts and people sharing their knowledge of this disease and treatments is very helpful! I get a little confused, however, wondering if I need to be more proactive. Though things are going well now, I want them to continue going well and want to be around for a long time. I am 71, until 6 months ago, I was healthy and fit - hiked the Grand Canyon last year, and other places out here in the southwest whenever possible. Diagnosed with Stage 1, head of pancreas, last January. Had 5 rounds of Fulfirinox, then Whipple, recovered from this without any unexpected problems, now back for 7 more rounds of the Fulfirinox. Surgeon was very happy with the surgery, clear margins, mass not attached to anything besides the pancreas, nothing seen anywhere internally, and testing of lymph nodes, no CA there either. I guess my biggest problem has been eating and keeping weight on. Everything tastes so funny, and not like I expect it to. But I am eating! I should be gaining, right now staying steady, so it could be worse, but I don’t have an extra ounce on me - like just about everyone dealing with this.
I guess if things start going south, I will look into the many recommendations here - I have not done much, no second opinions (I liked the surgeon, all he does is the Whipple procedure, and our hospital system here - UC Health, Colorado - though not Mayo or any other highly touted medical organization - seems to know what they’re doing). But then I worry that I am just not informed enough and should be looking into options (immunotherapy? Clinical trials?) and doing more.
Not having any problems now, maybe I need to relax and research more if/when something concerning occurs. Thanks again, for all the info and thoughts fighting this disease.