Where is best place to go for second opinion for stage 4 pancreatic?

@wheatley asked, "I keep hearing that if you switch to another chemo treatment that will eliminate you from a lot of clinical trials. Any thoughts on that?"

I wish I knew more, but I get so many different answers when I ask questions that I think the standard answer is, "It depends."

Some of the trials are a lot more strict about previous treatments than others. Since the FOLF____ variants and Gem/Abrax are both considered "standard of care" treatments, it seems most patients have already had one or the other or both, and in general.

One of the criteria I do see in some trials (not all relevant) is that it's based on "platinum resistance." So if you were successfully treated before with Folfirinox (which contains oxaliplatin) or cisplatin and then your disease progressed, that might open up some trials for you and rule out others.

What I perceive as bigger previous treatment inclusion/exclusion criteria are things whether you've had surgery or not, or whether you've received a treatment that permanently alters your immune system (mRNA vaccine, re-injection of trained T-cells) and stuff like that which most likely already be part of an advanced trial. I asked one research oncologist last week if injection of Natural Killer cells engineered from my own tumor tissue would disqualify me from a lot of other potential trials, and his answer was that it would not likely disqualify me from most of the trials he conducts.

BUT... and this is me with no medical training just expressing a gut feeling:

The clinical trials can take a long time to get into, and it seems like your disease may already be progressing. If the current treatment is not working (or not working well), and you could switch to something "new" (but still another standard of care) overnight, you might get better systemic disease control in the interim while you seek out appropriate clinical trials.

It would be good to get a new baseline before you switch: scans, CA19-9, other bloodwork, and ctDNA tests if you can find an appropriate one.

I think you should see any change in response within 6-8 weeks, definitely within 12.

If you switch to Gem/Abrax (+/- cisplatin), I imagine you'd either be on a biweekly schedule, or 3 weeks on w/ one week off. At that rate, you could still sample CA19-9 every two weeks to get a high-resolution view of the response/trend. I get the Signatera ctDNA test (based on tissue extracted during my Whipple) and abdominal/pelvic MRI (with chest CT) every 8-9 weeks, God-willing and insurance-funding... 😉

My initial treatment before Whipple was 12 rounds of Folfironix, because "that's just what you do." In particular, that's what has shown better results for people who can tolerate it -- younger, heathier, "good performance status," etc... But it doesn't seem like there was any personalized thought put into it. Despite my "meh" response to Folfirinox (slowly rising CA19-9 over 12 weeks, from mid-100's to mid-200's), my requests to consider a mid-course chemo switch or early abort for surgery were both politely dismissed by the experts. It seems to me like 3-6 months of time wasted.

Although you didn't have a major surgery, you might have some easy-access tumors that could be biopsied percutaneously under local anesthesia in order to get the tissue sample needed for Signatera monitoring. Definitely a question to ask, but maybe more appropriate for a surgical oncologist than your medOnc. You might need more recent scans do determine whether anything is easily accessed like that.

There are also options like storemytumor.com that can preserve your extracted tissue in a "live" state for future research. As a long shot, maybe you could find someone willing to work with that tissue and perform ex-vivo (in-vitro?) sensitivity testing -- seeing what drug(s) and treatments it might respond to best.

If you're in or near Richmond, perhaps consider Hopkins -- 3.5-hour direct train ride (the Northeast Regional) or 3.5-hour car trip.

Good luck.

Something to point out concerning the National Pancreas Foundation and their list of centers of excellence vs the Pancreatic Cancer Action Network and their list-

I met a representative from the National Pancreas Foundation at a Pancreatic Cancer Awareness Day program. I was there representing PanCan.org in the role of Outreach Chair for a State affiliate. What I had suspected from reading the National Pancreas Foundation website was confirmed by their representative…their area of focus is more on issues of pancreatitis whereas PanCan.org is more of tumors, particularly PDAC of which 90% are this type and the lesser frequency pNET and PACC and other rare types. With PNET tumors,cohere is an advocacy group that is more specialized than PanCan.org for this type.

PanCan.org was the innovator of a revolutionary clinical trial method known as precision promise. Other cancers are adopting the method scientists connected with PanCan.org proposed and developed to obtain answers faster and at lower cost in conducting trials. PanCan.org has a list of these high-volume Comprehensive Cancer Centers that are members of the Precision Promise Consortium, most of which are NCI designated Centers of Excellence in Cancer Treatment. Oncologists and surgical oncologists at these institutions are opinion leaders in the field of pancreatic cancer treatment.

Another good link to centers that meet the criteria of the National Comprehensive Cancer Network centers of excellence-
NATIONAL COMPREHENSIVE CANCER NETWORK MEMBERS

What is a CT DNA ? Is having a cyst on the pancreas something to be considered about?

Thanks

ctDNA - What is it?

If I may: As a longtime copy editor and fact-checker, I urge you ***never*** to use Wikipedia -- never. Ever.

Anyone can enter anything -- literally (I have some appalling screenshots, which I'll share) -- and there is NO editorial process through which anyone trained or knowledgeable checks the material for accuracy. In addition, there is no editorial board to ensure that all articles are written for layperson consumption, so some are a real slog.

I googled for Mayo + ctDNA; didn't get a hit for Mayo -- which shares, for free, an ENORMOUS amount of accurate info -- but here are links from Anderson and Dana-Farber. Also, Healthline is a good source for dr.-generated content for laypersons (my state's official library led me there), as is Hopkins.

(@sofee2022, I think these will be of use. Also, to the best of my knowledge only your doctor can tell you whether to be concerned about a cyst on your pancreas. If you have one, then presumably your dr. did the diagnosis -- ? If you're asking bc someone you care about has one, then perhaps ask that person to be forthcoming.)

jk77,

While I certainly agree about trusting any information site 100%, I have found wiki to be a good summary location for basics that are also represented at a more granular level. As an example, this is the link for pancan ... not all inclusive, and not being a medical professional, I can't immediately spot anything that is inaccurate ... but, it is helpful to "get one in the ballpark."

I trust your posts -- you acquired a lot of knowledge during your sister's illness -- and I appreciate very much your willingness to share (on this board) with those of us who are finding our way now, so I'm apologizing for disagreeing with you here.

I trust and accept your assertion that that particular entry seems OK (I'm not going to read or look at it). At the same time, I'm noting that people would do well to go to a website known to be *reputable* instead of going to a website known to be *iffy*. For ex., one can get a good overview from pancan.org or the NCI (National Cancer Institute) website.

Wikipedia is fine for reading about, say, a contemporary band -- but not for health matters. And I'm reiterating the other problem: that some articles are clearly written by people who don't know how to translate scientific or technical material into layperson language, rendering the articles almost useless under Wikipedia's professed mission.

There's always a better option.

PS: Below are screenshots of only three of the many errors / problematic bits I've seen on Wikipedia over the years: Rani Tara Devi is identified as both Eugenie Grosup and as Eugenia Marie Grosupovai ( = no one at Wikipedia understands or values the editorial process, which includes fact-checking for accuracy); someone inserted the inflammatory phrase "his giant Jewish nose" in a bio; and someone inserted the inflammatory name "big t-t" where an actual director's name had been, in a synopsis of a TV episode.
. . . . . . . And, no, I didn't insert these errors to make Wikip. look bad -- not my style. Plus, the site notes the IP address of everyone who alters an "article," so I'd have been barred form making correx, which I stubbornly persisted in doing over the years.

Thanks for your critique re using Wikipedia as an information source. Though I too find Wikipedia posts occasionally somewhat inaccurate and/or incomplete, IMHO they are often helpful when read with a critical eye. Coincidentally, lately I began reading "The Last Lecture" by Randy Pausch, his personal story as an academic and pancreatic cancer patient who died just a few months following his diagnosis. This relatively young, tenured professor at Carnegie-Mellon was an advocate of using Wikipedia.
On another note, thank-you. Your comment caused me to go back and poke around a bit. While poking around I came across this informative article regarding ctDNA testing as a prognostic biomarker for managing resectable pancreatic cancer.
https://www.oaepublish.com/articles/2394-4722.2022.20
I begin the next phase of my neoadjuvant treatments tomorrow (3 weeks of radiotherapy with reduced dose chemotherapy) before my anticipated modified Whipple in January. Thanks again.

Further, and in regard to another related DNA biomarker test (cfDNA) article published in October of 2023.....

Diagnosing and monitoring pancreatic cancer through cell-free DNA methylation: progress and prospects
https://biomarkerres.biomedcentral.com/articles/10.1186/s40364-023-00528-y