How long does horrible diarrhea stick around after chemo?

Which chemo drugs did you receive? That would be helpful info. I am on the Folfirinox regimen, and there are a couple of things I can share. Re diarrhea, we lowered my dosage after the first cycle because I had such bad nausea and diarrhea. I was told to alternate Lomotil (prescription) and Imodium (over the counter) every few hours to control it. Be sure to drink plenty of fluids to make up for what you lost. Also, my pre-med mix at chemo includes a dose of atropine, which helps control diarrhea. It's given just before the irinotecan, which is the drug in the Folfirinox regimen that typically causes diarrhea. Re low WBC, there are medications that can be given to help with that too. I received Udenyca; Neulasta is another one. Udenyca is given by injection at least 24 hours after the 5FU pump shuts down. (If you're on Folfirinox, you have the pump for about two days after the infusion appointment.) In both cases, talk to your MD, explain your situation and ask for help. Tweaks and changes can be made to help with side effects.

Hello @rburt68 and welcome to the NETs support group on Mayo Connect. I was wondering, like @ncteacher. which chemo you are taking. We have members who are taking different types of chemo and if you can share the names of the meds, I will try to introduce you to others who are having a similar experience.

As this sounds like a relatively new diagnosis, I'm wondering if you had symptoms that led to the discovery of the NETs or if it was found incidentally when the doctors were checking for something else?

@rburt68, this will be of limited use -- but not useless.

You're having an atypically rough start; please don't let it persuade you to stop chemo -- please try something else.

1. As @ncteacher noted, the doses of the components of your chemo regimen can be adjusted in order to reduce the side effects. Or, your onc. might choose a different regimen for you.
. . . . . Like ncteacher, I was on Folfirinox, and I too was given atropine with one of the components in order to stop bowel urgency. My diarrhea wasn't as bad as hers; the OTC remedy Immodium (generic = loperamide) was sufficient for me.

2. Chemo can be cumulative; I don't know whether it's accurate to say that it *always* is, but it was for me. My first four infusions of Folfirinox were tolerable (bad side effects for two days, less-bad for a few more, and about one good week out of the two-week cycle). The fifth and sixth were harder. The seventh and eighth were so bad that I had zero good days, *and* I passed out one night during the eighth.
. . . . . At the time, I thought, "Forget it -- I can't do this." And then I gradually felt better, and finally felt normal about three weeks after my eighth chemo -- felt pretty good and got a lot done for about six weeks, and then had my surgery.
. . . . . Chemo made it possible for me to *have* surgery, which I believe has been beneficial for me. So, yes, these tough chemos ARE worth it -- but do talk with your onc. about adjusting the dosage of your regimen or changing to a different regimen. My understanding is that Folfirinox and gemcitabine + abraxane (+ cisplatin sometimes) are the two regimens most commonly used to fight pancan, but I'm not knowledgeable enough to swear to that last statement.

Good luck.

@rburt68, how are you doing?