Began folfirinox treatment - have a few questions

My MD has not discussed any maintenance possibilities for me at this time. My cancer is wrapped around one vein- they are thinking they could possibly remake a section of vein if needed, during the Whipple.

They told me if the cancer was wrapped around an artery, I would not be able to have surgery.

@katiegrace, am I correct in understanding? You are having chemo before surgery, which will increase the chances that the tumor will be operable. This is a treatment approach developed at Mayo Clinic and now widely practised.

You might be interested in this article:
- A revolution in pancreatic cancer treatment https://newsnetwork.mayoclinic.org/discussion/a-revolution-in-pancreatic-cancer-treatment/

Do you have a date for your surgery?

Yes, the plan is 12 chemo treatments. 1 treatment every two weeks ( every other week). After the 12 treatments, then 1 month of rest, then the Whipple surgery. The surgery isn't scheduled yet. If chemo isn't delayed, surgery should be sometime after first week of Feb 2024. I will have my 7th chemo this Thurs.
Thank you for the article.

Hi, @lisn. I had 8 rounds of Folfirinox, from April thru August of this year with an unintended three-week gap in late May-early June. Although everyone's experience is different, I'm sharing mine in case it's of use.

-- I too needed atropine with irinotecan; without atropine, I had stomach distress and bowel urgency. I didn't have any ill effects from the atropine.
-- Irin. also made me develop post-nasal drip for a few hours; it made my eyelids twitch during the infusion; and after a few infusions, irin. also caused short-term, intermittent spasming of my hands (a few ours to a couple of days).

-- My fatigue "schedule" was:
......... Felt worn out on Day 1 (infusion day).
......... Felt reasonably OK on Days 2 and 3 *but* didn't get much done because I was attached to the pump for all of 2 and part of 3.
......... Felt pretty good on Day 4.
......... Felt awful on Days 5 and 6: fatigue, nausea, no appetite, diarrhea. @markymarkfl, who is very helpful and knowledgeable, suggested that taking a steroid on Days 1, 2, and 3 could be the reason for this pattern. Days 5 and 6 were always my worst.
......... Felt a bit better on Day 7 and a bit better still on Day 8. During the 1st few infusions, I felt good on Days 9-14 and was productive.

****** Please note ***** that chemo is cumulative, meaning that the side effects could become more intense with each infusion (mine did) and that the number of bad days could increase with each infusion (mine did -- with my final two infusions, I had zero good days, although I wasn't _miserable_ for all 14). That said, I'm very glad that I took Folfirinox (my CA19-9 dropped a lot), and I'd take it again if necessary.

Good luck and best wishes.

With regard to keeping notes: Because I'm almost surgically attached to my laptop, I use it to keep track of
(1) when I've taken which meds, and
(2) which side effects I'm having, and how much I've eaten / drunk.

I do #1 via folders (click on image below) because they take up no space on the hard drive, can be created instantly, can be searched, and are so small that I can look at several days' data at once; I do #2 in a txt file that I keep open most of the time so I can easily enter the info.

Regarding nausea: I had good results with generic Zofran and generic Phenergan. The latter made me tired, so it was also helpful for overnight. And, the instrux were to stagger the drugs -- that if Zofran didn't last the full 8 hours (it didn't), I was allowed to take Phenergan at hour 6 or so.

My onc. initially wrote for generic Zofran and generic Compazine; the latter is well-known as an anti-nausea drug.

I'm too tired to look up the generic names, but drugs(dot)com is a very helpful website for such stuff, including side effects. Good luck.

One more link for centers of exc. (and another useful site overall):
https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/

Thank you. It's good to know there a COE nearby and my oncologist has an affiliation with one of them.

Thanks for your reply.
Unfortunately, he's unable to continue with the Zofran due to the side effects (he was having breathing difficulties in addition to some of the other side effects). The nurse practitioner prescribed Ativan. He didn't start that yet since he's concerned about the side effects. Both the oncologist and the nurse practitioner are aware that he's extremely sensitive to most medications. Right now, he's of the mindset of dealing with the nausea which he's used to vs the risk of taking a new medication and what unknown side effects he might have. We're hoping that the vestibular issues he's still having from the vertigo attack resolve soon because on top of the nausea, he's still having motion sickness when turning over and when getting out of bed.