xeloda and dhiarrea

[Silviolina]

Hi, I am on Xeloda sice 2.5 years. I have HFS, but my worst issue is dhiarrea. Anyone else experiencing this?

S

[Bettybuckets]

Well nice to hear from you and that is great the 2.5 years and still going. Sorry about the diarrhoea… I have been on xeloda for 9 months and mostly I work the orthorhombic way with worry about constipaton but I have had some diarrhoea… after taking miralax and fiber gummies. I really dislike having HFS which keeps me from walking much.. just puffy sore feet and can’t wear most shoes sneaker… only a few pair of sandals can be tolerated.. not even socks these days… maybe I should give up and go onto another therapy but this is third line and I don’t want to wish them all to go by too fast.

[Hotlantaphatz]

Oh yea girl! Xeloda is a good med but the side effects freaked me out a bit. HFS! My feet turned black on the bottom. Some hair thinning. Oh yea the mouth sores were interesting. Let’s not forget about the GI stuff - diarrhea. Having said this, hang in there! Xxxx

[Beebopp in reply to Hotlantaphatz]

How did you handle the diarrhea?

[Silviolina in reply to Beebopp]

Hi Beebop, dissenten, diet and psyllium seed husks help. However starting on they day 10 (second week of treatment) I always get issues. Now I want to try 10 days on / 5 off and see if it gets better (did not discuss with my onc yet though).

[Beebopp in reply to Silviolina]

Thanks so much for the tips, I have not started on Xeloda yet, a week or so, just wanted to be prepared! Mets to my lungs, will be on 1000 mg x 2 a day🤞

[Beebopp in reply to Beebopp]

I have started Xeloda! Biggest problem seems to be reflux, going to start pepsid tonight before eating?

I also seem to feel like my body is very hot? No fever though

[Onedayatatime60]

Yay to the 2.5 years on Xeloda.

I am not on Xeloda but Herceptin/ Prejeta caused terrible diarrhea. Even though it is not the same treatment, I will share what I did for my bowel. The MDs and nurses at Onc centre had no suggestions, I just don't think they get how impactful it can be.

First, I created a chart with 4 columns I had a column for THE DAY FOOD EATEN GI SYMPTOM (diarrhea, stomach cramps etc MED taken ie Imodium/ Tylenol etc if any .

I tracked the days I had diarrhea to figure out if there was a pattern - for me I learned there was an obvious pattern with day 2, 9 and 10 being terrible. The food diary showed I had food triggers that made thing worse, for me they were - yogurt, nuts, cauliflower (a cruciferous veg) and greasy foods like potato chips. I treated my gut similar to inflammatory bowel disease and very loosely followed a FODMOP diet. (downloaded the Monash University FODMOP diet app) Like with IBS I avoided foods with insoluble fibre and ate foods that are sources of soluble fibre which are known to help with diarrhea as they soak up extra water in the gut. I occasionally took a prophylactic Imodium (like when flying) or when by my pattern I knew I was likely to have loose BM and had to leave the house . Taking the Imodium prophylactically occasionally was ok'd by my Onc. Things have improved markedly. I almost never think about it now, though still have occasional issues, nothing as bad as it previously was I still avoid certain food but no longer consult my FODMOP app for everything. I will avoid things like pizza the day before a flight, but I am happy that things have improved so much. It took at least 3 months of avoiding food triggers to see improvement. Again- I know it is not the same treatment but hope you get relief. I was willing to try anything to get improvement.

Recently I had a bean and chick pea salad - followed by diahrea Sure enough when I looked it up on my App, beans and chick peas are high in FODMOP in the amounts I ate. My point is diet for me, makes a difference.

[Silviolina in reply to Onedayatatime60]

Thx, I think I’ll try the listing for food!

[Jobyash]

Hi, I t’s very impressive that you’ve been on xeloda for 2 1/2 years. I have been on it for four months, but my tumour markers have just gone up. I hope you don’t mind me asking but have you found that your tumour markers have gone up and down over the 2 1/2 years? Many thanks Jo