Began folfirinox treatment - have a few questions

Oh yes, thank you, I missed that, I will. I have so many notes!

The cramping is likely caused by the irinotecan, which does a number on the gastrointestinal system. During my first cycle or two, I had awful diarrhea starting day 7 or 8 and lasting for several days, and I was told it was the irinotecan (which is nicknamed "I ran to the can"). Now I don't really get diarrhea, but I typically have some cramping. It feels like a light case of menstrual cramps (you can relate, I'm sure, but not your husband!). My daughter, an RN, mentioned a drug called Bentyl, which is supposed to relieve stomach and abdominal cramping in cases of irritable bowel syndrome. Generic is the dicyclomine mentioned above. I haven't asked about it because I don't think I'm that uncomfortable, and I have no idea whether it would be appropriately used in this case. Just thought I'd mention it.

Oh, I didn't realize that the Irinotecan would cause the cramping so many days later, thanks for letting me know. That nickname is so appropriate!

Has anyone suffered from a sickly sweet taste after folfirinox treatment?

In the days following my husband's second treatment on Wednesday, he's been complaining of a sickly sweet taste in his taste buds and in his throat at all times.

Foods or drinks don't taste different, but he has this lingering sickly sweet taste in his mouth all day long. It's been going on now for 5 days. I was wondering if anyone has had the same issue and if so, what helped?

The night of the treatment, he complained of that taste in his throat. He said he felt like he could taste the chemicals in the back of his throat. He vomited several hours after the treatment.

He also had a fever of 101.2 the night of his treatment. We were instructed to go to MSK for a fever workup. They did a whole bunch of tests, including a chest X-ray. All tests came back negative. We're waiting to talk to the oncologist tomorrow to see what caused the fever. One of the nurses said the fever could have been caused by the oxaliplatin.

My husband's second Folfirinox treatment was Wednesday, 9/27. A few hours later, he had a fever of 101.2 with intense pain throughout his body. The on call nurse instructed him to take 2 Tylenol and he still had a fever in the morning, so he had to go to MSK for a fever workup. They did a whole bunch of tests, including a chest X-ray. All tests came back negative. One of the nurses said the fever could have been caused by the oxaliplatin. The oncologist called today to say that going forward, they'll be giving him the regular steroids on treatment day, and an oral steroid for him to take on days 2 and 3. Has anyone else had this experience with Oxaliplatin? We've learned so much from everyone on this forum. As a result, he was given a prescription for Bentyl which was mentioned in one of my previous posts. Thank you

Hi @lisn, I moved your questions about side effects of FOLFIRINOX treatment for pancreatic cancer that has metastasized to your earlier discussion where you can connect again with members like @ncteacher @markymarkfl @mimimmx @kjc12 @ch1co2 @jk77.

I'm hoping that they will have tips for dealling with sickly sweet taste that your husband is experiencing. How has the fever been managed? How is he doing? And YOU?

I didn’t have any side effects from Folfirinox other than peripheral neuropathy from Oxaliplatin. Dexamethasone was both a pre and post medication and it was administered beginning with the first cycle.

I stopped using white refined sugar at an early age. After my Whipple and through treatment with Folfirinox, anything sweet or containing sugar was more pronounced. I kept a notebook of what was now overly sweet and avoided it. Eventually the sensitivity to sweets abated after chemo finished.

Thanks for tagging me, Colleen! I haven't had any issues with a sickly sweet taste after chemo. If anything, my taste buds have been somewhat blunted, making food seem less flavorful than before. Even this, though, has subsided as my treatment has progressed. Perhaps there's a way to doctor the food to give it a better flavor that overrides the lingering sweet taste. For example, years ago, when I received carboplatin for ovarian cancer, I had a metallic taste in my mouth. I switched to kosher salt for meals--regular salt "disappeared" on food--and mint Tic Tacs worked well between meals. You'd need to experiment a little to find the best solution for your husband.

Re fever, I haven't had that either. The only time I presented at chemo with a fever was when I had what ultimately was a gallbladder attack, back in July. I do see that fever can be one of the many side effects of oxaliplatin, so the nurse may be correct. I was originally prescribed an oral dose of dexamethasone, which I also get via IV as a premed, but I haven't taken it since cycle 2, I think. It seemed to cause hiccups, and I really haven't needed the extra support since then anyway.

@lisn , I hope you all have been able to solve these problems. Please let us know!

Thank you Colleen. He just finished his second treatment and he had a fever again. The team said that it's the Oxaliplatin. The remedy was going to be steroids on days 2 and 3, but he feels worse from the steroids so he's not taking them, managing the fever with Advil. However, the nausea is present all the time. Thanks to everyone's suggestions, he's been getting hydration on treatment day and now on disconnect day as well. I gave him a mint to put in his mouth when treatment started but he still got the taste and still has it 3 days later. I am doing well thank you. This forum has been so helpful and informative!

Thanks for your reply. He has noticed that his sense of smell has become very keen since starting treatment. I'll let him know about your experience with sweets being more pronounced while on chemo.