Had FOLFIRINOX pre Whipple surgery: Questions about chemo after

I am not a medical professional.

My understanding is that the Whipple procedure is almost always combined with either adjuvant chemo/radiation (following the surgery), or neoadjuvant chemo/radiation before and after surgery.

Pancreatic cancer cells are very evasive and sneaky - they can remain in the surgical bed, be transferred via blood or contact with other organs, etc.

If you have not been evaluated by a center of excellence, please do. Also, you need to spend about 100 hours reading on this topic. Be your own advocate!

I wished I had asked for more rounds of chemo following my Whipple. The oncologist did not think I need more, and I listened to him. Now the cancer seemed to be coming back after 17 months of remission. Having EUB Monday to check it out. Be your own advocate.

Second opinions! And if you don’t live in place where that is available from a center of excellence, do try to ask for a virtual meeting. Evasive and sneaky is correct! Margins can be clear and you can feel great- but you may still not be clear .
Not meant to scare you but only to say you must be your own advocate.

@anindita , I don't have time now to type it all out eloquently, so, as someone who experienced a recurrence very shortly after a "perfect" surgery, I'll just cheat by referring you to my 10/8/2023 reply to @gamaryanne on this thread: https://connect.mayoclinic.org/discussion/mrna-vaccine-trials/?pg=2 . I'm also pasting the same attachment to this thread.

I encourage you, at a minimum, to do LOTs of frequent follow-up CA19-9 testing after your Whipple, in addition to imaging and ctDNA tests like Signatera, PLUS chemo and/or radiation.

I can't say how effective the post-op chemo is, but I can tell you how ineffective the lack of it is. (I went from clean to Stage-4 in the blink of an eye.)

So sorry you've had this experience. My experience sounds very similiar to yours (clean after surgery) except that I am now receiving chemo at the 11th week after surgery. This is supposed to go for 6 months or for as long as I can tolerate it...a combination of Gemicitabine IV x 1 day and Capecitabine orally in a.m. & p.m. x 7 days with food. Good luck with your treatment.

Suggestions for reading?

@anindita, will you be getting chemotherapy after surgery? What type of chemo? How are you doing?

@michaelhunn7474, you asked for suggested reading. May I ask a bit more about your experience with pancreatic cancer? Have you recently been diagnosed? What type of information are you looking for at this stage in the journey?

My friend was diagnosed in July of 2021 with pancreatic cancer! Had Whipple and fulforinox for 6 months all for nothing! Tumor appeared on liver! Then gemcitibine for 3 months got pneumonia and had to be taken off it! She suffered through the entire journey and passed on august 2, 2023! From all the research I have done chemo should be done before they operate! Once they open you up, it spreads!

--- PRE-DISCUSSION DECLARATION: I HAVE NO MEDICAL TRAINING!
--- Content below is personal opinion from my own journey only.

@lindamarie2009 , I'm very sorry about the loss of your friend, but the last two sentences of your post are still the subject of much debate. (See YouTube debates between Matthew Katz and Jordan Berlin for some good info.)

My first PC symptoms appeared the same time as your friend's diagnosis. My official diagnosis came 3 months later. I had six months of Folfirinox before Whipple, which didn't really do much as far as I can tell, except waste six months (and give me some time to regain weight). No therapy after Whipple, then 4.5 months to a recurrence.

A lot depends on the stage of disease when discovered. In your friend's case, appearance on the liver after Whipple suggests it might have metastasized there undetected before the surgery, not necessarily spread because of the surgery. And that is part of the rationale behind neoadjuvant therapy. Nobody really knows what other micro-mets may exist.

In my case, the first recurrence was at the original surgical site, which suggests they simply didn't get everything that needed to be cut out.

The natural instinct to "remove the disease you know is there with a method known to work (surgery)" is not always wrong, and "treating disease that might be elsewhere with a therapy that might work" is sometimes right. Assuming it has spread errs on the side of caution, and if it has spread (or shows evidence of spread during neoadjuvant chemo), then the historical trend has been to cancel surgery and spare patients the difficulty or recovery (including the possibility they may remain to weak to ever get adjuvant chemo).

Surgeons generally require a 4-week washout period to clear your system of chemo before performing a Whipple, and it seems like about 8 weeks after Whipple before the average patient has recovered enough to begin adjuvant chemo. That leaves the original tumor going 4 weeks with no systemic therapy, and any undetected mets 12 weeks (4 before surgery and 8 after) to spread.

In contrast, if you take out the big tumor on Day 1 (and margins are clean and no spread due to the operation), then the biggest "fountain of disease" is gone and it's only the micro mets (if they exist) to control. Granted this gives the micro-mets an 8-week head start they wouldn't have had with neoadjuvant therapy, but with a lower total disease burden (big tumor gone), your own immune system and the adjuvant therapy might still be enough. If there were actually no micro-mets, then you win. If there were, then it still takes a while to determine whether the adjuvant chemo chosen for you is the right one.

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If I had a do-over in my case, I would ask for a total pancreatectomy instead of Whipple on Day 1 right after diagnosis. No issues with recurrence at the margin because the whole organ would be gone. And I would have requested HIPEC chemo be administered during surgery to "wash" the entire surgical bed and kill all micro-mets possible.

I would also have asked for as much live tumor tissue storage as possible, and have the tissue subjected to sensitivity testing against all the standard chemo and immuno/targeted therapy drugs as soon as possible, so that by the time I recovered from surgery, we'd know which adjuvant therapy works best.

Given that slowly rising CA19-9 levels foretold my recurrence before MRI or 3 ctDNA tests, I would also have requested CA19-9 testing every two weeks for the first couple months after surgery.

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A lot of the above involves procedures doctors won't do and/or insurance companies won't cover, but my OPINION is that they, collectively, would lead to better outcomes than our current, slowly-evolving standards of care currently achieve.

Just to reiterate, all the above is based on a statistically meaningless sample of one by a person with no medical training. 😉