CA 19-9 Levels - What is High Enough to Cause Concern for Prognosis?

@denip , You're very welcome.

Too late to edit my initial comment, but there's a typo in there: I would ask for the CA19-9 to be tested with EVERY blood draw (every two weeks) rather than every other draw. It's not the end of the world either way you go. Since my Folfirinox went on for 6 months before surgery, there were enough data points to see the trend that my cancer was barely under control, and getting imaging every two months confirmed it (as did the outside labs I was getting on my own). I would have advocated for a different chemo drug or for surgery after 3-4 months, knowing what I know now. But you'll be getting confirmation (by imaging and surgery) within 3 months, which I think is better than waiting.

I can't say I ever had a "good" reaction to Folfirinox, lol, because in general it's not fun. The fatigue factor is pretty much unavoidable, but anything you can do to maximize sleep quality, nutrition, and hydration will help. I felt nauseous several times but never vomited, and I had most of my diarrhea during the first two treatments, during which I was still recovering from the EUS/ERCP/biopsy and a subsequent infection. I added a preemptive Imodium capsule before each treatment afterward, and diarrhea was never a problem after that. Around the 4th or 5th treatment, my sinuses began to unload about two hours in, and sinus headaches definitely add to your fatigue. After the 5th treatment I was wiped out and dehydrated, blood sugar dropping (I became diabetic when my pancreas began to fail), tried my first and only MMJ gummy, and started blacking out with BP down to 80/40 and took a 911 ride to the ER. After that, improvements in my sleep situation, hydration, nutrition, and a Zyrtec for my sinuses kept me on a pretty even course through the 12th treatment.

As far as storing tumor tissue goes: The hospital performing the surgery will save some. Their pathology team will probably look at a piece during your surgery to see if it's cancer-free at the margins. They'll send the surgeon back to cut more if it's not. Then they'll probably have their pathologists look more deeply at it afterward, and/or send it off to another lab for analysis.

The questions to ask your team are for details about the above: Are they going to have full NGS (Next-Generation Sequencing, i.e., advanced DNA and other molecular analysis) done on it, and if so, by whom? There are a lot of companies in that space now, but I'm only familiar with Natera. My surgeon sent tissue to them, from which they built the "Signatera" ctDNA (circulating tumor DNA) blood test "filter" that checks my blood periodically for the presence of matching DNA. That's not automatic, so you have to request it. It's quite helpful to monitor your status after surgery, because it could be the first sign of microscopic residual disease.

The mechanics of the actual tissue storage are another consideration. In most cases it's frozen and stored on slides amenable to viewing under a microscope or sending off for additional DNA analysis, but the cells are no longer in a "live" state.

I spoke yesterday with a rep from https://storemytumor.com/ whose process freezes the tissue in a way such that it can be thawed again with about 87% of the cells returning to a "living" state. From this, they might have better tissue to develop new drugs from, but they can also do test-tube based sensitivity testing to other drugs, where they expose different cells to different drugs and see which is most effective at controlling/killing them.

StoreMyTumor (SMT) provides a collection kit and instructions to the surgeon for how to package it and ship immediately after surgery. SMT's one-time fees are around $5k-$6k US, plus $89/month for storage. I'll be talking to my surgeon about that later this week, and will post if I learn anything new.

Your husband will likely be off treatment for at least 8 weeks (4 before surgery and 4 after) in order to ensure stability (blood counts) and good healing. It's not something I hear of being done (especially first-line), but as soon as tumor tissue is removed during surgery, labs could theoretically begin testing that tissue against various chemo drugs to decide which is best before the post-op treatment begins. They'll probably just decide from the post-op pathology (and last presurgical imaging and CA19-9) whether his 3-drug combo actually worked or not. If it did, my guess is that's what they use the same for the post-op adjuvant treatment. If not, they'll just go with the other SoC (standard of care) recipe based around gemcitabine. Still, I would advocate for making the decision based on all knowledge possible to obtain, including any hereditary or environmental mutations involved. Those, along with sensitivity testing, might identify whether the original chemo, or Gemcitabine+/-Abraxane+/-Cisplatin are the better options. If those can't kill cells in a test tube, they probably won't kill them in a body, and that might direct them to look sooner rather than later at clinical trial drugs.