CEA up - guessing not good

Absolutely there are so many side effects to try to manage. We have been focusing on whole food, with upset stomach, crackers, bread and the like (almost like the need diet or low residue diet to keep it easy for him). Avoiding all spice (just Spicey items, putting normal spices like dill, tumeric, ginger in everything) and avoiding all deep fried. We just got put on the oxiplatin which has the negative cold effect, no cold water or air or food. Wishing you and wife well Chuck, especially with the new round of meds and side effects.

I feel for you both, I hope she gets some relief from the pain. Sending 💗

Please don't pay attention to the CEA. It is only a gross indicator, and anything over 20 indicates you probably have cancer buy above that, and variations above that are not meaningful. Besides. The new gold standard is ctDNA or circulating tumor DNA. Focus on the treatment and your daily care, toss the CE A findings.

When the numbers are going down the doctor says “looks like it’s working”, when they are going up “well, it’s only one indicator”. It gives us something to look at instead of waiting for the scan every 3 months. Hers went down 44 points from 2 weeks ago. We are taking that as a positive thing.

I've been on folfiri for five months. The irinotecan is known for causing diarrhea. The nurses told me the nickname is "I run to can". I use a combination of Lomotil (a prescription drug) and Imodium to control it. The nurses give me atropine before they begin the irinotecan infusion. That controls the diarrhea for about three days for me while I am wearing the infusion pump for the Flourouracil. The day I have the pump removed I begin the lomotil and Imodium combination. If I start having loose stools I take additional Imodium. I hope that helps.

@gmcnay52, "I run to can" as a nickname for irinotecan is a bit of dark humor - an apt nickname though.

@chuckmii, I hope you saw Gmcnay's post. Does your wife get any preventative medication before her chemo infusion to help control the diarrhea?

@gmcnay52, I look foward to getting to know more about you. What stage was your colorectal cancer? How much longer will you be on chemo? How are you doing?

She does get atropine and we are now doing lomotil every 6 hours. That worked well for round 2 but now on round 3 of Folfiri, it’s been pretty bad again the last 2 days. Didn’t start until after disconnecting the pump on Saturday and then bang. Had to cancel the udenyca shot yesterday because she was so nauseous and weak. Got there today but had to use a wheelchair and now that we are back home she is asleep. Completely wiped out. I know we are doing what we can but she made the comment on the way home that this is a horrible way to live. It just sucks.

I'm new to this group, hope my comments are helpful. Me stage 4 diagnos last july with tumors spread to liver, adrenals and lungs. I suffered wicked late onset diarrhea as well but I think I am finally getting the hang of it.
On chemo day I take 8 mg of dexamethazone and 8mg of zophran. At night I take 4mg of each then usually 4mg of zophran twice a day.
Key for my energy level is hydration, so I have a standing order for saline drip anytime I want it and use it often.
Plus I immediately change my diet to basically white: toast, yogurt, rice, cheese.
I was wiped out, had severe muscle wasting and couldn't walk, and probably felt like your wife is feeling now.
Now I'm driving, walking and have friends over for meals.

Meant to say I eat the white diet if I get diarrhea, otherwise I use over the counter meds for constipation or diarrhea as required.

I'm still praying for you Chuck and your wife.