What's next after folfirinox?

@sheridanb, I'm tagging a few members like @stageivsurvivor @wheatley @ncteacher @mnewland99 @lisn @mimimmx to name a few who may have some thoughts on what may be coming next. Naturally everyone is different.

Sheri, has your dad met with the oncologist in the meantime? What treatment options are being considered?

Thanks. We met with a nurse practitioner this last time. The oncologist has mentioned an oral chemo, or the "pump" without the day of chemo, or a different drug that may be easier to tolerate. But hasn't said anything definite. Wants to see results from petscan at the end of this month.
We're just hoping whatever it is allows my husband (not my dad) to have some energy to do anything other than sit on the couch. We've started going in for extra hydration and anti nausea stuff every few days and that has helped. Chemo #7 and #8 were the worst, but I think it is the added hydration that is helping. But he just has no energy to do anything. And if I'm not here to put something to eat/drink in his hands.. I think he would do without rather than stand up and walk to the kitchen. Also he is light headed a lot, so of course that makes him less likely to want to stand up. It's so hard on him. One more treatment, then we're curious what will come next.
He just started creon yesterday so I'm curious to see if that will make a difference in anything.

I got diagnosed with Stage 4 PDAC May 2023 with primary in pancreas body and numerous liver lesions. I had folfirinox for 6 rounds. The first few rounds were the worst and my oncologist tweaked the dosage to make it more tolerable. I ended up in emergency twice with the first 2 rounds…

When the neuropathy started in my hands, the oncologist swapped me over to gemcitabine and cisplatin for 2 rounds and then gem / carboplatin when the neuropathy got even worse. Bottom line is there are dosage and drug options which reduce the side effects. I was lucky in that I never got nausea but other common side effects such as diarrhoea and some fatigue.

My tumours and liver lesions shrank with each CT checkup until I took a 2 month chemo break when they started to grow again.

I am now onboarding onto a clinical trial which hopefully will be positive but it is a stage 1 so absolutely no guarantees it will help.

Good luck with the your husband’s journey. Bottom line there are multiple options and pathways.

I am stage 2b PDAC on the tail of my pancreas. Had Pancreatectomy/splenectomy in April 2023 followed by 12 infusions of folfirinox. The things that helped me most with fatigue was Olanzapine and adderall. I also had hydration after every infusion. I hope this is helpful.

@sheridanb, my apologies. I saw Dan and read dad.

Thank you. Neuropathy has recently started in his feet. We are hopeful that after folfirinox #12 in a week that whatever comes next will help with that and nausea and fatigue. Thank you for your response.

Thank you to @colleenyoung for tagging me on this. I appreciate the invitation. @sheridanb , I'm simply a patient, not any kind of medical professional. So please do not assume I'm suggesting or insisting that you do anything I mention. I am stage 4 PDAC, inoperable due to blood vessel involvement and lesions in my abdomen. CT scans and CA 19-9 blood results show that my situation is not as advanced as your husband's, so keep that in mind too.

I've actually been on modified Folfirinox since April 2023. Tomorrow will be cycle 25. I've been at a low(er) dose since cycle 1; it was at 80% of typical, and since then I've been at 60% of typical. We're now beginning to see some chemo resistance, so we are moving toward chemo radiation. In my case, it'll be radiation (probably 25 rounds of lower dose) on the main tumor, plus oral tablets of capecitabine, which metabolizes into 5FU. I am guessing that maybe the capecitabine is what your oncologist is mentioning. I don't know anything about dose level yet, but my MD has pointed out that it is chemo, so it will have some side effects. I'm assuming they'll be similar to the 5FU delivered via pump. I also assume it's taken daily, rather that the 46-hour dose via the pump, but I don't know that for sure.

What I most wanted to mention was: Does your husband see a palliative MD? If his medical practice offers palliative care or can refer to a palliative MD elsewhere, he might really benefit from it. According to the explanation I received, palliative care is designed to manage the side effects that cancer therapy causes. This can include the extra fluids, as you mention, but other things as well. For example, my palliative MD is the one who prescribed gabapentin, which is designed to help with neuropathy. He can help control nausea and pain. But he can also prescribe and facilitate physical therapy, occupational therapy, acupuncture, integrative medical care, nutrition counseling, massage...really, anything that might help mitigate all the side effects your husband is experiencing. It is not hospice care, although I'm sure the MD can help arrange that if/when needed.

I wish both of you all the best.

Thank you @ncteacher for all your information! Dan has seen someone from palliative care, but not recently. And that is a great suggestion to reach out to them about the side effects. He was contacted by them when this whole journey started, but I guess we were overwhelmed enough that I forgot that they may help at this point. Dan does take gabapentin as the initiating problem (before he knew he had cancer) was severe back pain ... which we learned from scans was from mets to the bones along his spine. And the gabapenin, or the radiation to a few spots in his back, has helped with that pain.
Thank you for sharing. I really appreciate you taking the time to help.