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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Profile picture for rigal @rigal

Sue l, I’m on 2000 mg of xeloda daily for MBC and experience the hand foot issue too. I am doing clobetasol and Urea 10 cream (OTC) twice a day. They help with the dryness and cracking but hardly eradicate the problem. Sometimes I throw on Vaseline for a little extra protection. My question is for anyone else using creams and lotions. Can you put a sock or nylon over the creams. Especially in the morning I have to get to work and don’t have time to let everything dry.
Good luck Sue. I’m wishing everyone the best

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for feet neuropathy, I am taking pregabalin ( lyrica) x 2 per day (75 mg) , I have meaningful reduction in numbness and shooting pains, I will have a meaningful increase in numbness if I skip a dose

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My husband has irreversible chemo induced neuropathy which started as a side effect of oxiliplatin. He takes Xeloda 3000mg a day. Gabapentin plus cymbalta plus over the counter Nerve Renew (b vitamins) has controlled it fairly well. Stage IV rectal cancer with liver metastasis. 20% urea cream helped with skin cracking and peeling. But the disease is stable after 16 mos so that’s good.

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Profile picture for Sue @sue_in_delaware

@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!

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I have been on xeloda for 5 months, i had the same problem with feet, i started using asper cream 3 in 1 and jell socks that you can get from amazon or walmart, it works i dont feel like walking on needles anymore, hope this helps

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Profile picture for mustang08 @mustang08

My husband has irreversible chemo induced neuropathy which started as a side effect of oxiliplatin. He takes Xeloda 3000mg a day. Gabapentin plus cymbalta plus over the counter Nerve Renew (b vitamins) has controlled it fairly well. Stage IV rectal cancer with liver metastasis. 20% urea cream helped with skin cracking and peeling. But the disease is stable after 16 mos so that’s good.

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Two years later still taking Xeloda Recently reduced to 2500 mg day to heal hand foot syndrome. Golfs 18 and plays pickle ball and sleeps a lot but good otherwise

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