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.