The Colon Club

Hey I need some help with my wife. My wife did FOLFOX about two years ago and had zero issues. She did her first round of FOLFIRI yesterday and it is kicking her butt. She is so nauseated and feeling sick, I have never seen her like this. Its weird because the Onc. said that the side effects should be the same as when she was on FOLFOX. What has others experience been with the two or with just FOLFIRI? What can I do to help her? She has prescription I'm not sure for what, but can you take more than one nausea drug? We have a call into the Onc. but curious what others have seen and done.

Thanks in advance.

Hi Tater, when I was on FOLFIRI I had a time with nausea. Please check with your oncologist first but Nauzene and Emetrol helped me more than any prescription meds did. They are both over the counter. You can buy them on Amazon or Walmart. My Walmart was out of stock regularly though. Hope you are able to find relief for your wife.

Fluff Bottom wrote:Hi Tater, when I was on FOLFIRI I had a time with nausea. Please check with your oncologist first but Nauzene and Emetrol helped me more than any prescription meds did. They are both over the counter. You can buy them on Amazon or Walmart. My Walmart was out of stock regularly though. Hope you are able to find relief for your wife.

thanks, so you said you had a time, was a time during the cycle that was worse or were their specific cycles that were worse than others?

My memory isn’t what it used to be but it seems like the nausea was less predictable for me than on FOLFOX. I was only on it a few months before it stopped working.

Sorry I can’t remember more details.

Hi Tater,

I am currently doing 5 rounds of FolFIRI. I get the infusion on a Wednesday and get disconnected from the Pump on Friday. On the first day of infusion when I get home I throw up twice, 2nd day throw up twice or once, Friday throw up once and Saturday maybe throw up, but most likely not. I salivate and spit nonstop. I am fatigued and feel overall totally crappy.

I am going to tell you there is absolutely nothing you can do about it. I am a male. I tried Zofran, numerous times and it doesn't help. Your body is going to do what its going to do. Oh the other thing after the chemo has kind of run its course, I burn when I pee, like 1 week out and it hurts for two days doing it. The irritation/burn lingers, and it makes it hard to sleep. I also pee several times at night. After 5 days from Chemo things start getting better, but still not fun. Not to mention diarrhea.

Sorry I can't help you because I can't help myself. Your Oncologist is full of shit, because FolFIRI is harder then Folfox, its the next line of defense after trying FOLFOX. I did Folfox and my issues were jaw cramping first bite syndrome, cold sensitivity, nueropathy and thats it. Nausea was a non issue. Don't get me wrong FOLFOX sucked too. FOLFIRI seems worse though. I got 3 more rounds.

It's hard to eat/drink when doing chemo. You just don't want to eat/drink, but you have to force yourself too. Also on FOLFIRI my hair falls out on 2nd treatment, like clockwork. It doesn't thin, it falls out. So I have my wife shave me bald. I still look good LOL...FOLFOX my hair thinned, never fell out.

I hope she is almost done. Good Luck Buddy!! Sorry we are going through this.

I did FOLFIRINOX (FOLFOX + Irenotecan) and was horribly dick for the first couple of rounds until I started taking EMend. It's a 3 day pill pack you start the day of chemo and continue for 2 more days. After that I no longer vomitted. All told I think I was on 2-3 anti-nauseants, so you can be on more than one. I'd take a capsule of CBD oil in the evenings too. I'd still feel nauseated at times, but No longer was vomitting, which was a win. Good luck to you, I hope you find something that works!

Folfiri made me feel a lot worse than folfox. Had that sick feeling right away. But it’s an effective treatment, talk to your onc, I ended up having to take strong anti nausea meds all the time. Stay strong.

Folrifi was worse for me also. I barely had anything on Folfox. Strangely, side effects have been less severe the more infusions I get. After the last treatment, I had fatigue and slept 12 hours the night of disconnect. I do however, take anti nausea (ondansetron or prochlorperazine maleate) and anti diarrhea (immodium or loperamide hydrochloride) meds for a day or two even if I don't have the symptoms.

So I had nausea pretty badly on both FOLFOX and FOLFIRI.

My anti-nausea regime ended up being:

- Emend (aprepitant) tablet 1 hour before infusion
- Aloxi (palonosetron) IV at infusion, plus the usual dexamethasone
- Zofran (ondansetron) wafers every 6 hours for about 2-3 days
- Maxalon (metoclopramide) tablets every 4 hours as needed between the Zofran

Once Akynzeo (netupitant + palonosetron) tablets became available here, this replaced the Emend tablet and the IV Aloxi.

This, plus THC/CBD oil, meant I had pretty much no nausea, and a reasonable appetite.

In short, there’s lots that can be done pharmaceutically, and a number of the drugs are safe to combine. It’s worth sticking at to get the right combination.

Best of luck,
Rob

Hello,

I had 12 treatments of FOLFIRI and after the first one I wondered how I would ever get through 12. The nausea was terrible and it also gave me an odd sensation in my upper abdomen. My oncologist advised me that FOLFIRI it very hard on the digestive system and neutrophils. Unfortunately, no nausea meds helped much. My worst days were the night of the infusion and the next two days. I would start to improve after my infusion was removed on day 3. Each treatment was slightly different for me as I didn’t always feel quite the same from treatment to treatment. I was too sick to do anything on those three days. I did get through the 12 treatments. It wasn’t a walk in the park but somehow I got through. Best wishes to your wife.

FOLFIRI was much worse for me than FOLFOX.
Emend helped. Also had dexamethasone for first couple of days. This combo generally worked well enough to keep me from throwing up, though the dexamethasone gave me hiccups.

Besides nausea, though, FOLFIRI generally left me feeling crappy and listless for at least the first week after infusion. Not much way around that as far as I know, unfortunately.

Interesting how people have such different reactions to the same treatment. My husband was completely clobbered by Xeloda/Oxaliplatin but so far Folfiri has been a breeze (by comparison), even after 18 cycles.

My boyfriend had a harder time on FOLFIRI too. He had quite a bit of nausea and heartburn and just looked sick as a dog for the first few days. His skin also turned a sickly pale grayish color and it smelled like chemicals. FOLFOX is a lot less noticeable. I even had him check to make sure the 5-FU pump was working yesterday, because I thought he was feeling too well and it was suspicious!

But it seems different for everyone. We tried a lot of different things while he was on FOLFIRI. Ginger tea helped with his nausea. During infusions he wore those pressure point bracelets you can wear if you get seasick and they seemed to help too. When it got bad he used the anti-emetics the hospital gave us but sometimes simple natural stuff gave him relief. Aloe vera juice was soothing on his digestive tract. I forget all the things we did, but I think you learn more with each infusion and get familiar with what makes it better and what makes it worse.

I did FOLFIRINOX (FOLFOX + Irenotecan) and was horribly sick for the first couple of rounds until I started taking EMend. It's a 3 day pill pack you start the day of chemo and continue for 2 more days. After that I no longer vomitted. All told I think I was on 2-3 anti-nauseants, so you can be on more than one. I'd take a capsule of CBD oil in the evenings too. I'd still feel nauseated at times, but No longer was vomitting, which was a win. Good luck to you, I hope you find something that works!

thanks everyone for your responses it has helped. She gets unplugged today. The second session has gone a lot better. They pushed it into her slower and she went in better prepared. Don;t get me wrong she still feels it but it is normal chemo sick for her. SHe's thinking that the hair might be starting to thin now.