Began folfirinox treatment - have a few questions

I think you're counting the days correctly. I usually take 4-5 days to begin to feel like myself (or what passes for it these days, haha!). If you think about it, that's only 2-3 days after chemo ends, because you have to count the pump days as chemo days. I don't do any walking or exercise on the days right after chemo, but during the off-week, I feel well enough to get back outside. The exhaustion on Thursday makes sense; by then the premeds--including steroids--would have worn off, and he had a steroid crash. Sometimes on Wednesday (day 2), I feel like I could do anything. That's the steroids talking.

Sorry to hear about the reaction to irinotecan. Wonder if they'll keep that up in future cycles?

I'm glad to hear that on the off week, you feel well enough to get outside. That's what I'm hoping for for him. I really think that getting outside often will help him both physically as well as mentally. I worry about going through the winter months being stuck inside on his good weeks, but we'll cross that bridge when we get there.

Regarding the reaction to the Irinotecan, the said that the Atropine will be a standing order going forward. They gave him half a dose which helped immediately.

I was very concerned about the cold sensitivity in the throat, but the nurses said that it usually happens around the third treatment. They told him to test with his finger - if he doesn't have a sensitivity in his finger, then he won't have it in his throat. In the meantime, I had already put notes on the faucets, fridge and freezer as a warning - the bronchospasms sound absolutely terrifying.

Thanks for your help!

I also think you're counting right (with Day 1 being the first day chemo is administered).

I suppose you could ask about having him get a liter or two of IV saline for hydration when you go to have the pump disconnected, and if nausea is an issue, maybe repeating some of the IV pre-meds. My pre-med mix switched out the Zofran and replaced it with Aloxi, which is supposed to stay active in your system longer.

Managing nausea is key to keeping an appetite, maintaining weight, and getting food for energy. Managing hydration helps flush out the chemo and contributes to feeling better in general. Whatever weird symptoms or wacky questions come up don't be too shy to ask about them.

One other weird side effect I experienced from Folfirinox was an occasional muscle spasm where one finger would sort of lock up fully extended or partially bent backward. Sometimes I would get a similar spasm in one toe, or in the sole of my foot. Pulling it back out and straightening it manually, plus a little massage would relieve it.

Random thought -- I don't remember if there's a diabetic aspect to your husband's condition, but it might be worthwhile to track blood sugar issues. Steroids in the pre-meds (and any after-meds like dexamethasone) can drive blood sugar through the roof and affect energy levels in weird ways.

I am getting to the end of my Folfirinox regimen. 3 more infusions to go. Things that have helped me:

Atropine is a must before iranotecan. I sometimes have a second shot if I continue to experience cramping. After my first session, I lost significant weight due to nausea. They added saline infusions on the day of chemo, on the day the pump is disconnected and two days after the pump disconnect. They also prescribed Olanzapine, which helps with sleep and appetite and was a game changer for me. I’m also trying acupuncture immediately after chemo. The 2-3 days after pump is removed are the hardest, primarily cold sensitivity and fatigue, but otherwise I have been tolerating the treatment well. One more side effect, I had difficulty speaking on the second and third infusion ( called dysarthria). They changed the order that the chemo was infused and that solved the issue. I wish you and your husband well. It is a difficult course of treatment. Ask your medical team for help. Many things can be done to make it more tolerable. Good luck.

I hope today is a better one for your husband. Mine started his treatment in April, 2023. He is having his final treatment this Tuesday and it has been an up and down journey to say the least. You will find each treatment a little different than the previous. Does your husband take an oral steroid at home on days 2 and 3? This might help in as the IV ones wear off. He has recently been getting IV of saline day of treatment and also on the disconnect days and this has helped a lot. They say each treatment is cumulative and he does feel they do get harder. He had to take a month off to try and recover from all the associated symptoms. Keep in touch with your Doctor’s team with all your concerns.
It helped my husband greatly to keep a notebook and at the end of the day log in whatever symptoms (nausea, diarrhea, energy level, etc) he had so that he could figure out what days would be worse and what helped for the next treatment.
Take things one day at a time. He is lucky to have you through this journey. Reach out to me if I can be of any help in the caregiver role. God bless you all🙏🙏

Thanks for the advice about asking questions. I have been doing that, and to be quite honest most of my questions that I ask are thanks to this form and all of the helpful suggestions I've gotten from here. At the top of my list now is the question about getting saline on disconnect day.

Today is day 6, and he's still not feeling like himself. He's got some intestinal cramps, but bowel movements are normal. He said if he still has them tomorrow he's going to reach out to the team and just mention it.

Luckily, he does not have any diabetic issues.

Thanks again for your help!

Thank you, this is very helpful and encouraging! I'm so happy you've got 3 more treatments to go! The saline suggestion is my first question for the team when we go next week. I'm glad to hear that you're tolerating the treatment well. I've been very worried about this next step in the treatment plan, but this forum has been so helpful. I appreciate your input!

I'm so happy that your husband's final treatment is Tuesday!

Today is day 6, and he's still not feeling like himself. He's got some intestinal cramps, but bowel movements are normal. He said if he still has them tomorrow he's going to reach out to the team.

Regarding the notebook, thanks for mentioning that. I had started jotting down notes from what I was observing each day. I'm going to keep going with that and see what's helpful.

The saline has been mentioned several times, and is on my list for discussion next week.

Thank you.

You’re so welcome. My husband has found that days 4,5, and 6 are very hard usually. Maybe because the steroids are finished after day 3. He also still gets cramping and has been taking dicyclomine prescribed by his Oncologist as needed. He feels it is been very helpful.

I would ask about the Olanzapine as well. It has really made a difference.