For @ncteacher and others on Folfirinox or similar combinations, I would be interested if you could ask your oncologist about possible drug substitutions (Note: Ask ABOUT them, not necessarily FOR them!).
In particular, due to the well-known neuropathy caused by Oxaliplatin, could they substitute Cisplatin for it?
Could they substitute oral Capecitabine for the 5-FU? That would eliminate the take-home chemo pump and maybe also the Leucovorin (Folinic Acid) IV while still providing some systemic 5-FU.
We know they're already substituting Onivyde (liposomal irinotecan) for irinotecan and calling it NALIRIFOX.
Although the other combinations may be less well studied, they (Cisplatin and Capecitabine) are approved and considered less "toxic" on their own compared to the ones I proposed replacing.
Because they are approved, they "could theoretically" be used off-label in such combinations.
I did not get much beneficial effect from Folfirinox, and since my GAC regimen may be losing its effectiveness, he has proposed a possible regimen using Onivyde + 5-FU (= NALIRI). I don't think they would do as much good on their own as they would with a platinum agent added.
If I could lose the neuropathy (Oxaliplatin) and the take-home (5-FU) pump but still get similar ingredients, with a hopefully similar outcome and much improved quality of life, I would try it (NalCapCis?). (Note: I have no medical training and am not recommending this as a regimen for anyone else!!!)
But visits with the actual oncologist (as opposed to PA or NP) are few and far between, and they don't always answer questions you send them by email. I'm hoping that if more people from this forum have an opportunity to ask their own oncologist(s), we might get a few actual answers and expert opinions to share and discuss here.
Thanks everyone!
Markymark, if your current chemo treatment is genuinely waning, are you seriously looking at getting into a clinical trial?