mydadrocks
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not only did you run it – that’s a fantastic time!
i’m a runner myself, and you are an incredible inspiration. congratulations!last i heard, he gets decadron and aloxi before the infusion.
that may have changed, they live far from me and it’s hard for me to keep up with everything.This is the protocol Dr. Javle has my dad on as well. It is, to be blunt, kicking the s**t out of him. In much the same way it has affected your son. We are not yet to tube feeding status….yet being the key word. The diarrhea and dehydration are the current stumbling blocks for him, and he’s not eating much to speak of, although i’m told he’s eaten more the last day or two. His comments have been “i’m not eating if i can’t taste anything and i’m just going to s**t it out”. He looked and sounded marginally better after a couple of weeks off the 5FU (his counts and electrolytes were just pitiful). His markers have consistently risen as well, despite near-complete clearing of his metastases. Weird, weird.
His original protocol was FOLFIRINOX, and that was like tylenol compared to this. This is just rotten.
please let us know how your son’s doing. i’ll be thinking of you, lots.
He sees Javle also!
Yes, it’s good news. No one can explain the rising CA 19-9, so they’re just rolling with it until there’s a reason not to. Since the pancreas is clear, there’s no reason not to change chemo.
The 6 & 3-year-old will do it, for sure! I’ve only got half that….the younger half….and i cannot begin to imagine. Girl, you’ve got some iron in you.
Dad’s been on FOLFIRINOX since december and has done beautifully in terms of side effects and tumor response in the pancreas. the most notable side effect has been diarrhea. he hasn’t had any of the cold sensitivity/neuropathy-type side effects at all.
dr. javle’s awesome. let us know how you’re doing.
Dad has been using it since he was diagnosed in november. it works beautifully for him, so much so that he’s not using anything else right now for pain. he is also on chemo.
don’t let yourself get into the pain cycle. pain is harder to manage when you let it go without treating it. let us know how you’re doing?
while you’re on the search for info re. use of 5FU-based protocols for treatment of CCA –
am i looking in the wrong place for any studies describing the use of FOLFIRINOX/FOLFOX/FOLFIRI for CCA? can’t find anything other than pancreatic CA studies.
i was going to suggest a proton pump inhibitor as well. also, have you asked about aloxi (palonosetron, given IV on the first day of chemo) or kytril (granisetron – does come in a tablet)? let us know how she’s doing.
Dad had a PICC for the first 2 months (grrrr) and thursday was his first round of chemo (FOLFIRINOX) with the port. he is so much happier without that infection risk dangling from his arm. he was pretty sore last week, and itchy from all the tape, but he’s much, much happier with the port.
jtoro, how’s it going? what are they giving you for premed when you get chemo? dad gets aloxi and decadron, and he takes immodium and zofran on his own beforehand, and does – with occasional exception, and he’s not chancing a long car trip, LOL! – beautifully.
if you’re still having a lot of pain, maybe your doc would consider a patch? fentanyl works well for a lot of people.
