Stomach issues & severe weight loss

[tanz2019]

Hi. I spent a year on Orserdu and we stopped it in July because I had severe diarrhea. We hoped stopping it would cause the diarrhea to go away. It hasn’t stopped. I’ve been tested for intestinal infections and had a colonoscopy and there were no issues. I’m scheduled for an endoscopy next week. I’ve lost 20+ lbs since June and I feel like I am wasting away. I get the sense that this is a grey area between my GI doc and my oncologist because we have no idea whether 5 years of chemo meds caused this or something else triggered it. My oncologist is concerned because I’ve been off chemo meds for so long but one of the side effects of Xeloda which would be next is diarrhea. Has anyone had similar issues?

[Nocillo]

Do you have lobular by chance? I lost a lot of weight when my lobular showed up in my stomach. But, I was vomiting constantly too. If you don’t have lobular, I hope the endoscopy gives you some answers!🤞

[tanz2019 in reply to Nocillo]

Hi..I don't have lobular. Yea strange to hope that they find something because I really want this mystery to be over.

[Fiercefighter13]

Hi, I’m so sorry for what is happening with you. Every time something changes it’s just plain scary. My cancer spread to my stomach and colon, but I have lobular. That kind of spread would be extremely unusual with ductal. I’ve been on Xeloda for two years. No diarrhea or stomach issues whatsoever. Some people actually get constipated on Xeloda. If your symptoms are related to disease progression, then maybe Xeloda would help? Have you had a PET scan lately to check on things that way? I hope you find your answers quickly, wishing you wellness, take care.

[Oberammergaux2]

hi Tanz, I found relief from diarrhea with acupuncture. It may be worth a try for you especially if they don’t find any other issues. I hope you find some answers soon, not knowing what is going on can be frightening…..and stress doesn’t help.

[Aussiegirl2]

Hi Tanz, I had a slightly similar experience. My doctor stopped chemo because of intense nausea but the nausea continued for months. I lost more than 10 kilos, about two stone. The thing that finally helped was hypnotherapy. I can’t explain how or why it helped but it did.

[fancydog]

Its so hard not knowing the reason for a significant problem. Last yr I had dizziness, vomiting, a 30 lb wt loss in a month. Testing of many different kinds all turned up negative then it just stopped in about 3 mon. Hoping that will be your case.

[atoth17]

I was on Xeloda for about seven months and I did not have any diarrhea as a side effect.

I hope you figure out what is going on and soon! I’m sorry you are having to deal with the diarrhea and weight loss, it’s no fun to have this day in and day out.

Allison

[chemohawk]

I, too, have experienced severe diarrhea with Ibrance. Gastroenterologist found that I have collagenous colitis. We found something that helped me tremendously. Cholesteramine. It's inconvenient to take because it's a powder that needs to be mixed into water, but It has definitely helped my colon! I actually take a dose of cholestyramine (Questran Light) in the mornings and a dose of Colestipol at dinner time.

This combination has cut out the daily (sometimes up to 20 times a day!) GI problems. The only aggravation is trying to take your other pills around the time constraints of the bile sequestrates.

Check with pharmacist: you must take your other meds at least 1 hour before the sequestrant or 4 hours after the sequestrant. BUT IT absolutely works for me. Oh, I also take a pre/probiotic to help my gut health. Best of luck!

Feel free to ask questions. I'm here for you. I experienced diarrhea that kept me homebound for years.