My preliminary approach has been to follow my oncologist's recommendation to switch to a modified rescue regimen involving the FOLFIRINOX protocol - (no oxaliplatin)
It's early days yet. That said here's the good, the bad and the ugly of my first time on the new treatment plan
Good: pre-existing chemo-related numbness in feet continues to resolve, with sensation to the soles of my feet to Normal (not just baseline after first rounds of G-A protocol)
Bad: reoccurrence of initial presenting Sxs (urgency & loose stools)
Ugly: a very bad reaction occurring within 30 seconds of starting the lysosomal Irinotecan -- scary since the pain was so bad I was inadvertently screaming out OMG (my nurse had left the room, clearly not anticipating any reaction). My screams brought a whole slew of medical professionals running, including the Doc covering the unit. It was decided that this was most likely a known reaction described as "lower back pain." I was given low doses of Benadryl and Dexamethasone; and after an hour with no more symptoms and throbbing gradually mostly gone, my infusion was resumed with no further symptoms. I also had a prescription for an anxiety drug provided by my oncologist, but between the doziness following receiving Benadryl, and perhaps some mild euphorias from the low dose steroid, I had calmed down. I was also given several injections of a tiny dose of Atropine, I don't remember now what the reason was.,, but I was not actually "shock-y" at the time; in fact my systolic BP was quite a bit higher than even what is induced by "white-coat- anxiety."
For follow up I'm supposed to take a small dose of dexamethasone for 3 days, and I have Imodium on hand to control any more diarrhea.
I am planning on taking it easy today, partly to try to calm down the current reactivity of my body (once one part goes a-kilter, others follow =? an argument for treating the whole patient).
Partly to try to avoid tangling and kinking the lines to my infusion pump. (Yes the package from the entity that fills prescriptions on behalf of my university hospital is what I would describe as user-hostile. Their recommendation for a wearable contraption to allow mobility is to point out the some patients choose to pack the supplied unit in ANOTHER FANNY PACK. Really? knowing that your patients typically have tumors in different areas of the abdominal cavity which are best avoided to prevent additional pain, it wouldn't have been possible to add another adjustable (up and down) strap to help stabilize the pack, avoiding further chance of interruption to the pump.
And partly to distract myself. For instance, I will try to avoid Podcasts that that merit comments like "there's nothing like attempting to fall asleep to catastrophe [The worst year in human history 536]. "
Hope this helps!