Xeloda Questions

[Topood]

I’ve been on Xeloda since late October, and love it for the most part. My only issues are my hands and feeling gassy. My hands aren’t peeling, but I think they’ve lost maybe 25% of their sensation, and they feel like sausages that are about to explode! Does that keep getting worse, or does it hit a plateau? I’ve also had issues with diarrhea, which are mostly solved with Immodium, but I have times when I pass so much gas that I feel like a Saturday Night Live skit!! Gas-X helps a tiny bit, and watching what I eat (I learned that cutting out citrus made things much better), but there are days when I just can’t control it.....does this aspect keep getting worse?

I want to emphasize that overall I love Xeloda—-but if I can manage these aspects better I’ll love it even more!

Thanks for your attention, wonderful women!

Barbara

[Iwasborntodothis]

I am on round four so I’d love to hear what other say. gas...yes, hand sore... yes. My eyes are sore at the corners like toxic liquid is coming out - have to keep aquaphor on them. Almost constant nausea too. But, it’s working well so far 🙏🤞

[Shelly1009 in reply to Iwasborntodothis]

Are you taking anything for reflux? I found that after adding Pepcid AC twice daily that my nausea went away. Along with taking my doses a full 30 minutes after I've had a meal.

[Iwasborntodothis in reply to Shelly1009]

I take Pepcid at lunchtime because of reflux. I find that little snacks help some - maybe I will up the Pepcid dose. Thanks!

[Topood in reply to Shelly1009]

I have almost no nausea since I stopped eating fresh oranges and grapefruit! Though sometimes I wonder if I’m again lactose intolerant, as I was on Afinitor....these drugs and our bodies are so complicated!!! But my stomach problem is more gas and burbling, if you know what I mean!

[Lovemylakie]

Hi! I have been on Xeloda since December. I have the hand foot syndrome which is very bothersome. Just ordered 40% urea cream and hope it helps. I don't have the gassy issue but my stomach grumbles all the time. I am extremely fatigued but I am also on Xgeva for mets to bone. Getting CT scan May 24th. I think maybe treatment isn't working as well. Having more shortness of breath, also have mets to both lungs. If this treatment isn't working they will put me on Taxotere which not looking forward to.

Best wishes to you

Robin

[Topood in reply to Lovemylakie]

I found Taxotere relatively easy...and it really worked for me! Didn’t lose much hair...but I hope hope hope that Xeloda works!

[Iwasborntodothis]

I was reading that hair loss is a side effect but doc said it wasn’t and I seem to have more hair mince I stopped Ibrance/Letrozole - any thoughts on this?

[Topood]

My hair actually looks better than it ever has on Xeloda....who knew???

[Oganesian in reply to Topood]

Yes!!!

[Shelly1009]

I've been on it for several months and am finding the hand & foot syndrome to be the most bothersome of the side effects. Skin has begun to peel off the bottom of my feet in sheets. It's not painful but they're tender and a bit sore. We're coming into the warm weather here and I'm a huge lover of going barefoot but I don't think that's happening this year. Other than that the meds are woking. I feel better and my scans have shown improvement after a few cycles.

[Kellyonekanobe in reply to Shelly1009]

How many mg of Xeloda do you take?

[Shelly1009 in reply to Kellyonekanobe]

3,000mg split into two daily doses. Two weeks on, one week off.

[Topood in reply to Kellyonekanobe]

I took 3000 daily in two doses, with one week on, one week off.

[Topood]

My hands feel as if they are recovering from being burned...and they’re swollen! No peeling yet. My doctor says it will end when I’m off Xeloda but I love the drug otherwise, and want to be on it for years!!I might try putting my hands in ice water....

[Lnlc in reply to Topood]

I've been on xeloda for three months and so far, the results are favorable and happily, with no real bothersome side effects. My feet do get very warm and after I shower at night, I run them under cold, cold water, which seems to help. Best of luck!

[Anita-B]

Hi I have been on Xeolda for a year. 4000mg per day, 2000 in the morning and 2000 in the evening two weeks on one week off. I am tolerating it well although I do suffer with hand and feet issues, you just have to be very diligent about moisturising hands and feet. I have also lost my fingerprints!! but overall I am doing well on it, I am able to do everything I did before, I do get a bit tired at times but that is to be expected. I am due to get the results of my latest scans on Mon so I am praying for good results. Xeolda has stopped my tumours from growing and there have been no spread while I have been on it, also some of my tumours have shrunk. My tumours are all in my bones, so I am hoping it will continue to work for me for a very long time God willing .

[Oganesian in reply to Anita-B]

I love reading success stories My Xeloda adventure starts next Monday!

[rubyc1234]

I was on xeloda for a year and a half and struggled with huge amounts of gas the entire time as well as stomach upset and diarrhea. I learned to eat smaller amounts more frequenty than big meals and that helped. However, it was a constant in my life until I came off of it.

[Topood in reply to rubyc1234]

Thanks so much....knowing this will help me manage better!

[Oganesian in reply to rubyc1234]

I'm so ready for the gases. It's better than feeling you're gonna have a heart attack or a stroke any minute.

[rubyc1234 in reply to rubyc1234]

I never once had the hand foot syndrome, if you can believe it, just gut issues. The Xeloda stabilized my cancer so I am grateful for that. I am now on Ibrance and Letrozole.

[Arisgram]

Hi there! I've been on X since October. Not much gas, but H&F for sure. I'm going to ask to try the viagara cream. A study shows it helps about 40% of us!! Best of luck! Andi

[Topood in reply to Arisgram]

I mentioned that to my doctor and she hadn’t heard of it....

[Arisgram in reply to Topood]

ascopubs.org/doi/abs/10.120...

Here's a retrospective study

[Topood in reply to Arisgram]

Thanks!

[Topood]

Thanks! I’ll look that up! I’ve never heard of it!

[Eve1958]

Hi....I have been on Xeloda since January. 1st 2 sets not bad...third made up for it with super upper chest/upper back and left arm muscle spasms and pain. On a new set after seeing a few more spots on my spine...this time my feet have swollen to huge blocks!! Tried soaking, raising them above my heart...nothing helps much. Any suggestions???

[Lovemylakie]

I bought PurSources by PurOrganics Urea 40% cream from amazon. What a difference in treating hand foot syndrome. I paid $17.00 US.

[Topood]

Thanks! I’ll look for it!

[Oganesian]

Taking notes. I start Xeloda on Monday, after 5 days of exemestane (sleepless hot flashy on crack)! I'm happy that my hormones will be left in peace. Gas is good, isn't it? I'll take all the gas needed. Take good care of those sausages! Are you using creams or oils?

[Topood in reply to Oganesian]

Yes, all kind of lotions during the day (40% Urea that someone recommended seems to help, though I’m still a little on the fence about it....)and I night I slather my hands and feet with Aquaphor....putting socks on after that has made my feet feel much better...I think it stopped some cracking. Fingers are still sausages...maybe I should try overnight gloves, too! Good luck with it....I am very grateful for it.

[HOPE1413]

I am on my second cycle of Xeloda 2000mg in the morning and 1500mg in the evening, 2 weeks on-1week off. I experienced nausea and acid reflux. I increased Prilosec to twice a day and added Pepcid as well. I don't have any issues with gas, so far. Constipation is an issue but I'm used to that, taking stool softeners and Miralax. I know these comments are from a few months ago but I wonder if you all have any new suggestions for dealing with the hand/foot syndrome. It just showed up a few days ago and I'm not a fan. I'm using Aquaphor on hands/feet and covering them at night and day. It hurts to walk, hands are starting to hurt. No cracking or peeling or swelling yet.

Thanks, Mandi