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Thank you for all this information. How are you handling things so far? Who else have you reached out to? I have asked him to start a notebook at all his appointments. He's a guy so not sure if he has lol. I, however have been killing myself doing research and trying to find alternatives. Listening to podcasts all day as well. Now I have heard modified Folfirinox before. What does the modified mean exactly? And yes he has been fortunate so far. Nausea for 3 days and diarrhea only twice. Prior to infusion he received anti nausea and fluids intravenously. But when you say prep meds....I think they have only been administering Zofran and Compazine. From where I work. I know a lot of patients cannot handle Compazine. He has no oral meds prior to chemo yet that I know of. And you are welcome. If you look up this dual thermal it sounds so promising but I'm not sure who offers it. If you find out anything...please let me know.
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A little more feedback.
1. My nurses gave me 2x ondansetron (generic Zofran) 8mg + dexamethasone (steroid) at the start of each Folfirinox infusion.
Also, with the second through eighth infusions, they gave me a dose of atropine with the last part of the infusion (irinotecan) because that drug affects me so intensely (my eyelids twitch, I sweat, and my hands tremble). The atropine halted one side effect (urgency to defecate) but the others remained during infusion and for abut an hour or two after.
2. My anti-nausea drugs for home use are ondansetron and promethazine (my insurance wouldn't cover generic Compazine, but the promethazine works well for me, so no loss).
3. I encourage your brother to record every doctor's appt. -- it's just too hard to listen and take copious notes. I don't have a smartphone, so I use a small Olympus digital recorder (about the size of half a pack of cigarettes).