Anyone stage 3 taking Xeloda?

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  • SuprSurvivr
    SuprSurvivr Member Posts: 139
    edited August 2017

    Seems like drs start with 4,000 per day dose. Most seem to have to adjust during second cycle. I'm on 3,000 per day now. Let me know if you have any specific questions. Good luck and God bless! ✨🙏🏻✨

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  • Mish_in_Virginia
    Mish_in_Virginia Member Posts: 7
    edited October 2017

    Hello! Based on the results of that June 2017 NEJM study, my oncologist has recommended Xeloda for me starting in December. (I did pre-mastectomy ACT and am doing post-surgery radiation now). I was really ready to be done with this, so I'm not excited to be taking more chemo, even though it is oral and not supposed to be as tough as the other stuff. I'm girding myself up here and would love to hear tips from anyone else who has gone this route.

    Is it true you should avoid dairy? Were you able to walk for exercise while taking it? (Walking 3-4 miles daily is the only thing that keeps me sane, but I am worried about the hand & foot problems.) Any problems with diarrhea? Anyone else take this drug who has IBS? What else should I know?

    Thanks for any advice!

    Michele

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  • Mish_in_Virginia
    Mish_in_Virginia Member Posts: 7
    edited October 2017

    Hi, @SuprSurvivr. Thanks for your post on your Xeloda dosage. I hope it's going well for you. I start it in a month. I'd appreciate any advice you'd like to share based on your experience. (See my post from today for my Qs.)

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  • Miamimi
    Miamimi Member Posts: 16
    edited October 2017

    Hi There,

    I was prescribed 6 months of Xeloda. I could function fine on it and work out walk etc. I stopped halfway through becasue my lower leg went numb. I also was not interested in eating so lost a lot of weight! I am now in the PALLAS trial instead. I have three oncologists and two of them didn't agree with the Xeloda approach. Overall the xeloda didnt impact my day to day functioning

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  • SuprSurvivr
    SuprSurvivr Member Posts: 139
    edited October 2017

    Mish - I'm going to refer you to the Xeloda and TNBC blog stream. It's way more active and if you go back, you'll see my posts all the way thru my Xeloda treatment plus when I gave advice to a few ladies who started just after me. Best of luck and God bless! ✨🙏🏻

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  • Mish_in_Virginia
    Mish_in_Virginia Member Posts: 7
    edited October 2017

    Thanks, @MiamiMi. Glad to hear you were able to walk on Xeloda. Exercise is the only thing that is keeping me sane right now. I've gained 25 pounds in the 10 months since diagnosis, so I wouldn't mind losing. LOL :) Hope the PALLAS trial is working out well for you!

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  • Mish_in_Virginia
    Mish_in_Virginia Member Posts: 7
    edited December 2017

    Hello! Just a heads up that I started the Xeloda this week. Pills two times a day; two weeks on, one week off. So far so good! I am drinking lots of water and putting Theraplex on my hands and feet. No redness yet, but may be too early. I will report back as I go along here and let you know how it goes. Hit me up if you have Qs. Cheers, all.

    Mish

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  • Hanging_in_there
    Hanging_in_there Member Posts: 226
    edited February 2018

    So how is it going Mish-in-Virginia? I'm on my last cycle on Xeloda and Hand/Foot Syndrome is pretty bad. I'm ready for it to end.

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  • Mish_in_Virginia
    Mish_in_Virginia Member Posts: 7
    edited February 2018

    Hi, Hanging_in_there. Sorry to hear your hands and feet are doing badly. I'm just starting round 4 of 8. I'm doing pretty well. Only a little bit of dryness on my hands, thankfully (I use Udderly Smooth 10% urea during the day and Theraplex at night). Xeloda does give me some acid reflux and make me really sleepy, though. The most important thing I've found to drink, drink, drink water constantly. I feel much more alert when I do. Glad to hear that you've made it to the end, though. Way to go! Hope your skin recovers quickly.

    Update: I talked to my doc, and she said it's the dehydration from Xeloda that is causing my tiredness. Xeloda=dehydration and deydration=fatigue. So I'm going to set an alarm to remind me to drink more water, even when I'm not thirsty. Good luck, my sisters!

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  • Mish_in_Virginia
    Mish_in_Virginia Member Posts: 7
    edited September 2018

    Hello, all! I promised to report after finishing my five months of daily Xeloda, so here it is! Overall, it was not bad. As I've said previously, you need to drink a lot of water to prevent tiredness. Use lots of lotion on your hands and feet (the urea Udderly Smooth especially) and reapply every time you wash your hands and heavily before bed. The last few months, I did have problem with feet blistering, but only if I took long walks. I got a cute pair of black sneakers with memory foam to use on my commute and cut back on my long walks. (The blisters you get aren't normal — the whole pad of my foot would become one big blister! The good news is that the blister would go away entirely by the next day.) I also had minor acid reflux that was resolvable with antacids.

    If you are reading this and wondering, can I do this? My answer is yes, you can. It's a long time to be taking the pills and I did start to really curse them at the end, but that was just because I wanted to be done. (A year and a half is soooo long for active treatment.) I'm the sort of person who feels like she needs to do everything she can to beat this, so I am happy took it, no regrets. (Also, as of this writing, 3 months after ending Xeloda, I am back to yoga, Zumba, swimming and walking and have lost 12 pounds!) If you have questions, send me a message, even if this post is old now. If I get your message, I will respond! Cheers, M

    P.S. Also, I did notice that my hair grew really slowly when I was on Xeloda. It's coming in much more now that I am done.

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  • Jennifer522
    Jennifer522 Member Posts: 254
    edited September 2018

    It's nice to hear from someone done with Xeloda. I am starting round 7 on Monday and I am wore down. I am tired, my feet are ripped up to the point where I am wearing band aids in a few spots. Just finished off a container of urea 40% and bought the udderly smooth, which I like so much better.

    If I said the word I could be done with Xeloda, my MO said 6 to 8 rounds. But I am hard headed and want to finish it. If I ever had a recurrence, I would blame stopping Xeloda before finishing all 8.


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  • Mish_in_Virginia
    Mish_in_Virginia Member Posts: 7
    edited September 2018

    Hey, Jennifer. 7 rounds! That is so great. You're so close to the end! I pushed on for the same reason: I needed to know that I did absolutely everything that I could. Hang in there, girl! You got this. :) 💪

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