Recent diagnosis: Have questions about treatment options?

@mrajat, I thought I would check in. How are you doing with your treatment decisions?

I did start the chemo BEFORE the Whipple, as recommended and had to stop as I was practically comatose. Yes, I disregarded (hard to say I "went against" because I know my oncologist was sincere and had spent many years trying to make his patients well) his recommendation. I would say the oncologist supported my decision, though disagreed with it and said radiation was palliative, not a cure. Also, I had great support from my son and daughter who saw what the chemo did and wanted me to have as good a life as possible in my later years. I still see the oncologist every 3 months and he persists in suggesting chemo at every meeting, but accepts my decision.
I did not have radiation until a mass appeared in my mesentery, over a year after the Whipple. I found out then how much less radiation impacted my body. I now see both the oncologist (the chemo expert) and the radiologist every 3 months.

I was diagnosed in August 2022 and had total pancreatectomy with major vascular reconstruction at Mayo in July 2023. I am currently doing very well and had clear scans just last week at Mayo.

In regards to chemo, I was saying that I would absolutely advocate for chemotherapy both before and after surgery. Even if found to have clear margins during surgery. In my opinion, the more chemo the better. And chemo after surgery can help prevent recurrence by killing off micrometastasis.

Ah I see. But you don't think the ill effects of keeping tumor in there might outweigh the downside of delaying chemo by 2 months?
I got repeat blood work and my CA19-9 increased from 153 to 177 in 11 days, so that makes me think the tumor isn't as aggressive as what I have heard in some other cases.

Hi Carrie! Seems like radiation has worked for you so far. Do you monitor your CA19-9 levels and has it been under control?

Some other random thoughts:

1) In the time you have between now and surgery (or chemo if you go that route), try to get all the relevant genetic tests possible done: at least a germline test like Invitae to determine any inherited mutations you may have.

2) It might not hurt to get a somatic blood test like Guardant 360 for genetic mutations of cancer cells floating around in your blood.

3) If you go with surgery first, ask your surgeon ASAP (because this stuff takes time to resolve) his/her process for saving tumor tissue and having some of it stored locally or sent out for NGS (Next-generation Sequencing).
a) NGS options include tests from companies like Tempus
b) "Live-state" tumor storage from companies like https://storemytumor.com/
c) Sensitivity testing from a company like https://www.travera.com/
d) ctDNA tests like Signatera for MRD (Microscopic Residual Disease); useful for ongoing assessment of treatment effectiveness or (supporting) indication of recurrence.

Travera had a free clinical trial going on last summer for testing pancreatic tissue. Since you may not know before surgery or before adjuvant chemo begins which drugs are most effective on your cancer, using the recovery time after surgery to get sensitivity tests done might help your docs start you on the best chemo first.

(e.g., even though Folfirinox is the regimen of choice for young, fit patients like you, it might not be the best. In my case, Gemcitabine + Abraxane + Cisplatin after the recurrence turned out to be way more effective. Had we switched to that part way through my neoadjuvant treatment, my outcome might have been very different.)

Regarding adjuvant therapy: If you go straight to surgery without any prior (neoadjuvant) chemo, after surgery you will still be a "chemo virgin" ("treatment naive" is the medical term, iirc). This might qualify you for certain clinical trials, including "vaccine" trials that you might not otherwise be eligible for. MSKCC always has a ton of trials going on, but every trial is time-consuming and tricky to get into. Ask about those options at your first opportunity.

Try to get at least one more CA19-9 test as a baseline before you begin treatment (surgery or chemo). Get the tests again after surgery as well, ideally at biweekly intervals. You might see inflated numbers shortly after surgery (due to inflammation, etc), but you should eventually see a downward trend, and eventually (ideally) numbers in the low/normal range. Don't stop there -- that should be your new, post-op baseline, which serves as the reference for successive tests to see if you ever start trending upward.

I would strongly advocate for chemo after surgery or a well documented clinical trial. I too had clear margins and lymph nodes but it did read its head again.
So very glad I did chemo afterwards and continued into a clinical trial before my chemo was exhausted.