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)

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

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.

Jump to this post

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

REPLY
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!

Jump to this post

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

REPLY

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.

REPLY
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

Jump to this post

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

REPLY
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!

Jump to this post

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

REPLY

I’m thankful to have stumbled upon this thread. I’m newly diagnosed Stage 2 colon cancer. I had my sigmoid colon removed which is where the tumor (7 cm) was. It had wrapped around to the other side and attached to my right ovary, Fallopian tube and appendix and cecum so they removed all. I had 0/28 nodes affected, and clean margins. Because I’m considered high risk (I’ve had ulcerative colitis for 25 years), I will be doing Xeloda and oxiplatin. I start on July 2. The side effects scare me, but I was able to see how my sister dealt with the hand and foot syndrome (she just finished treatment for breast cancer). I will be doing 3 cycles of Xeloda and oxiplatin as my oncologist said recent research shows that 3 months is just as effective as 6.
The nurse said keeping my hands and feet super moisturizer and wearing socks at night will help. She also said wear shoes at all times.
Any other tips?

REPLY

I am currently on 1000mg of Xeloda twice daily. One week on and one week off. I have hand foot syndrome from the side effects of the medicine. I have tried all kind of lotions, Urea, and Triamcinolone. It is extremely hard to walk for long period of times or know what kind of shoes to wear. I understand friction is bad for them but it is kind of hard to walk with no friction! Just wondered if anyone has suggestions. Thanks!

REPLY
Profile picture for mjjc @mjjc

Has the acupuncturist helped with hand foot syndrome?

Jump to this post

Welcome To Connect, @mjjc.

May I ask if you could share more details? There are many members who’ve written about Hand-Foot syndrome (HFS) – skin reaction that appears on the palms of the hands and/or the soles of the feet as a result of certain chemotherapy agents – and it will also help me bring other people into the conversation. I look forward to getting to know you.

REPLY
Profile picture for sallyg @sallyg

Hi
I have stage IV colon cancer with mets to liver and lungs and have been on maintainence therapy since 7/2015 which consists of 1150mg of xeloda twice a day for two weeks followed by a week off
In addition I have an infusion of Avastin every 3 weeks
I have been NED since June of 2015 thank the lord
Seems the xeloda/Avastin is working and hope it continues
Xeloda is a hard drug
I have had significant hand and foot syndrome which has lessened with time
My feet are actually pretty good and I wear protective cotton gloves most of the time which helps
Bottom line however is that I am very thankful I have been able to tolerate the drug pretty well as I have 2 friends that couldn't handle it
In addition I work with a wonderful acupuncturist who works with cancer patients and I think this has helped as well
We just need to be strong and never give up

Jump to this post

Has the acupuncturist helped with hand foot syndrome?

REPLY

Hi
I have stage IV colon cancer with mets to liver and lungs and have been on maintainence therapy since 7/2015 which consists of 1150mg of xeloda twice a day for two weeks followed by a week off
In addition I have an infusion of Avastin every 3 weeks
I have been NED since June of 2015 thank the lord
Seems the xeloda/Avastin is working and hope it continues
Xeloda is a hard drug
I have had significant hand and foot syndrome which has lessened with time
My feet are actually pretty good and I wear protective cotton gloves most of the time which helps
Bottom line however is that I am very thankful I have been able to tolerate the drug pretty well as I have 2 friends that couldn't handle it
In addition I work with a wonderful acupuncturist who works with cancer patients and I think this has helped as well
We just need to be strong and never give up

REPLY
Please sign in or register to post a reply.