Anyone taken Xeloda for a long period of time: Side effects?

Posted by leesburger @jseim106, May 6, 2015

I was diagnosed with Stage I colorectal 3/12, Had surgeries and chemo, and was declared NED. Then 12/13 it was back, Stage IV, mets to lung and liver. I've had chemo again and am now NED (Thank God), but am on Xeloda, and have been told it was for the rest of my life. I also take Chinese herbs and IV Vitamin C, so don't really know what has helped. I'm currently taking Xeloda, one week on, one week off : 1000mg BID.

Has anyone else taken Xeloda for a long period of time, and if so, what are the long term side effects. I have painful neuropathy in my feet and would like it to go away!

Thanks for all your help and support (I'm open to any questions about my journey & tricks that I believe have helped me)

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leesburger | @jseim106 | Feb 25, 2016

In reply to @sue_in_delaware "@jseim106 How is Xeloda working for you? Xeloda (capecitabine pills) may not be working :( I..." + (show)

Hi Sue,<br />
<br />
I stopped Xeloda in December and have continued my acupuncture and Chinese herbs and so far have had a normal CEA, but won't have a scan until June. Hoping everything stays normal. I'm not sure what to tell you. I believe I've had success with Vit C and acupuncture and dietary changes, but who really knows what works. Maybe there's an acupuncturist in your area that specializes in cancer?? Let me know how you are doing!<br />
<br />

Sue | @sue_in_delaware | Feb 25, 2016

@jseim106 How is Xeloda working for you?
Xeloda (capecitabine pills) may not be working 🙁 I started taking 3000 mg daily 2 weeks on 1 week off last October. Recently my cycle was changed to 1 week on and 1 week off (still 3000 mg daily) because of severe hand/foot side effects.
However, a new MRI scan yesterday shows NEW tumors in my liver and a "suspicious lung nodule." I've been hoping that Xeloda was going to shrink the existing tumor and prevent new ones, not GET MORE tumors. I'm so bummed.

Sue | @sue_in_delaware | Jan 8, 2016

@jseim106,
Now that I've been on Xeloda for a little over 3 months, I can relate to the foot pain and issues. I've been taking Xeloda for 2 weeks on and 1 week off. By the 11th day in the 2 week cycle, my feet start to crack and peel with blisters forming along my toes. Then on the 12th day (and 3 to 4 days later) it feels like I'm walking on sharp stones (and it doesn't matter how much padding I put in my shoes, the pain makes it really hard to walk around.) I have stomach issues too, but they are tolerable. During my 1 week "off" the side effects subside and by the time the week is up and I have to start the 2 week cycle again, I'm feeling pretty good. I go for a check up on the 13th and might ask my doc if I can do 11 days on then a week off. It might prevent the blisters and pain.

I'd like to find people who've been on just Xeloda because I'm wondering if it really does keep shrinking tumors or at least prevent them from growing. I might have to be on it for the rest of my life, assuming it does what it's supposed to do.

Can you give more insight. What's it's been like being on Xeloda? Thanks, and best wishes!

Sue | @sue_in_delaware | Nov 11, 2015

Hi jseim106. I've only just started taking Xeloda so I'd like to follow your journey. My initial dose is 3000 mg a day, taken for 2 weeks then take 1 week off, etc. I hope it shrinks my tumors without making me deathly ill like the chemotherapy infusions were doing to me. Thanks and take care!