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@markymarkfl

@robee , You're very welcome, and... I might lean toward the opinion of MSK over a local oncologist, but with considerations:

1) Will you be getting the chemo at MSK regularly, or getting it locally? If local, make sure your local oncologist has a good communication channel open w/ your MSK "consulting" oncologist and is willing to collaborate with them on your treatment when appropriate.

2) Since you've already done Folfirinox, you know what it's like, you know its relative (in-)effectiveness, and your system is currently "clean," I would personally choose a different chemo regimen just to see what kind of response it produces. That would include very frequent CA19-9 monitoring, Signatera ctDNA tests if possible, and new scans 2 months out, absolute max no longer than 3, to assess. I'm not sure exactly which cocktail MSK was recommending, but Gem seems like the basis for most, and is affordable. They could couple it with cisplatin (especially if you have an appropriate mutation) and/or Abraxane. Abraxane is very expensive and not always covered by insurance (at least not w/o appeals and paperwork), so it might not be approved by the time you start. (Same thing happened with me.)

If you wanted to try a "somewhat scientifically controlled" experiment, you might increase by one drug at a time; e.g., do 3 treatments on Gem only, then 3 on Gem + Cis, then 3 on Gem + Cis + Abraxane, with CA19-9 testing accompanying every step. That would give your body time to adjust, save the worst effects (hair loss and neuropathy) until last, and allow all the Abraxane paperwork approvals to go through.

I must repeat the disclaimer here that I have no medical training, and that a lot of doctors are not receptive to stuff that requires extra work like that, but if you're a good advocate and basically volunteer yourself as a guinea pig that will do most of the work, maybe they'll be receptive. The biggest, most obvious downside and risk is that if you're not starting with the full dose of everything, there's a chance disease could spread while you're experimenting. But my take is that if they're recommending Folfirinox only and it's not the right med for YOU, disease could spread anyway; and, if the others are recommending ONLY Gem, then planning for immediate escalation with the other two drugs provides a stronger treatment option.

Now 9 months into my GCA regimen, with neuropathy and fatigue adding up, two oncologists have recommended I either reduce the Cis/Abrax doses or eliminate them completely and go with Gem only. But I'm against that so far; I'm not going to stop a treatment that seems to be working otherwise at controlling disease, and I'd rather have neuropathy than a spreading cancer. One onco has a possible trial I'll find out about next month, but until then, I'm going full steam ahead on the present course. I'll switch only if there's something more promising.

Regarding the cycles and schedule of Gem/Cis/Abrax, I don't know how biweekly or 3-on/1-off is chosen, or if it's very specific to my exact combo and dose. For me, biweekly works because of the travel involved. I did ask about a schedule of once every 3 weeks instead of every 2 weeks with a dose reduction, and the PA said the research they followed was based on 2-week intervals (tied to cell growth cycles and rates, etc), but it does seem like 3 weeks out of every 4 provides some extra cytotoxic power.

Finally, I wish I knew a lot more about trials than I do. 🙁 What I've learned, aside from reading, has mostly come from the trials I applied to but didn't qualify for or was accepted into but couldn't travel for.

As far as trials themselves go: Yes, I did register with PanCan.org, and they have provided me updated lists several times, although a bit too broad sometimes. I also registered with CancerCommons.org; they assigned a PhD researcher to my case and provided a short list of very detailed trial recommendations. It's a worthwhile option if you're comfortable providing them as much info as they ask for,

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Replies to "@robee , You're very welcome, and... I might lean toward the opinion of MSK over a..."

One extra postscript regarding trials:

What I've found about trials is that no matter who your oncology provider is, you probably won't hear from them about any trials other than the ones they're actively participating in, so you have to do a lot of research. E.g., if you're at MD Anderson, Mayo, Hopkins, Cleveland Clinic, Farber, Langone, MSK, etc, you'll probably only hear from them about studies they're engaged in. I've not heard of them sending patients somewhere else for a more appropriate trials, so a lot of that falls back onto the patient or advocate.

See comments above about PanCan.org and CancerCommons.org.

If you're searching the government website, it can be hard to filter out trials for the right disease. Now that "tumor agnostic" treatment is becoming a thing, where they treat you more by the mutation rather than the organ of origin, you may have to look a little deeper. E.g., one trial I'm applying for was created primarily for ovarian cancer patients with peritoneal mets, but they decided pancreatic cancer with peritoneal mets was a similar enough target they that opened it for that as well.

As such, using the right keywords in your search can be tricky. If you're looking for a specific drug, it might be listed only by its internal lab/developer name (ABC-123) instead of its generic name (yuckamibalab) or its trade name (Corrupto). If you're searching meds to treat a specific mutation (e.g., "ATM") you can search for that, but you might get too many or two few hits. Searching for the class of drugs relevant to that mutation (ATR Inhibitor, PARP Inhibitor, etc...) or characteristics of the mutation (DNA Damage Repair) might help, but it's REALLY time consuming, tiresome, and not very fruitful. That's where PanCan and CancerCommons can help.

When you find a trial on the government website, it usually lists a principal investigator by name; sometimes with email and phone contacts. That's one place where you can get more info. But if the "locations" tab lists other sites, it's worth contacting them directly if possible (by phone and email, in case your email gets ignored or filtered into their spam folder). The government website is often out of date wrt studies that are open/closed/recruiting etc, so get the info for each local site if you can and follow up directly.