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@wheatley

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? Thank you.

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@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.