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Sorry about your brother's diagnosis! I'm a newbie at this, just being diagnosed at stage 4 myself in April. But it sounds like you all have a ton of questions. This board is a good place to start, as is Google. I would suggest you write down questions so you can ask his oncologist. I keep a notebook that I use at all my appointments, and I jot questions on sticky notes or separate papers so I'm prepared. As you all work through this, you may want to work with a National Cancer Institute comprehensive cancer center; there's a list online. Based on this board's activity, many people seek second opinions and travel to facilities to work with certain MDs, so that may be something to explore.
Re the nausea, yeah, modified Folfirinox has that reputation. Based on my tiny experience, if he was sick for only three days, that's great. I was nauseated for a week and a half after my first chemo and had diarrhea for a week of that as well. Did your brother receive prep meds before the chemo began? I get Zofran, dexamethasone and Emend via IV first. As you inquire about the oral meds, ask what's dosed before chemo. Perhaps there are some adjustments that can be made. Re surgery, there is a procedure called the Whipple. I don't know much because I don't qualify for surgery due to blood vessel involvement. If you search for it on this board and/or online, you'll find explanations that will help. I have not heard of dual thermal ablation, so thanks for that tip. It just went onto my own list of questions for the oncologist.
Replies to "Sorry about your brother's diagnosis! I'm a newbie at this, just being diagnosed at stage 4..."
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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I had terrible nausea after my first folfirinox infusion. Lost 10 lbs in 10 days. My team did several things that has substantially helped. First, they have added saline infusions on the day of the chemo, on the day the pump is disconnected and in day five after the infusion. They also prescribed Olanzapine which has been a game changer (reduce nausea, increase appetite). On day of infusion they also are providing anti nausea treatment. Finally, I take Zofran 3x per day and compazine 2x per day. Since these adjustments, I have not lost more weight and I am able to work through out the two weeks after the infusion.
I receive my fourth infusion tomorrow. Hope this helps.