All about Xeloda
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I’m on 3000 a day 7 on 7 off.
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@denny123 I hated those shots too!! It also depended on which nurse gave it to me. I could never pick who would give it to me and there was one who was brutal! She didn't follow the injection guidelines (room temp, slow injection over a minute, etc). and it always hurt like hell for some reason. Other nurses knew how to make the whole process less painful. Good riddance!
@aj thank you for sharing your dose. That makes me feel better. I do see someone else on here who is also on 3,000 a day.
I wish I asked my second MO about the "paper" she referenced concerning the lower dose for starting Xeloda.
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Maybe this is it? It was a retrospective review.
https://pubmed.ncbi.nlm.nih.gov/15890665/
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Capecitabine/Xeloda has failed after 8 months. I had a 4 week break last spring for surgery but it continued working after that taking 3x500mg in the morning, 2 tablets with supper on the 14 days on, 7 off cycle. Tolerated well, using diclofenac gel on palms & soles to minimize peeling. I did lose my fingerprints giving me less gripping ability.
However, my CA 15-3 was creeping up, same thing it did 2 years ago when liver mets were first seen. MRI showed growth of lesions. I’ll be moving on to Trodelvy then eribulin when progression occurs again. Last year, my longest stretch of chemo was only 4 months so 2024 was a nice improvement. I felt generally OK but still anemic with less energy in the evening.
@dulcea that report is from 2005 so there may be something more recent. Or, your MD saw a presentation at a meeting which might not have been published. Frequently, with “real world” experience beyond the clinical trials done for drug approval, dosing and other recommendations change. Example=topical Voltaren for hand & foot syndrome.
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@vlnrph I am so sorry to hear about your progression. We always know its going to happen at some point but still sucks when it does. Sounds like you have a plan. Trodelvy is in my future too after Xeloda.
Thanks for clarifying the date on that link. You'd think though, if the thought was there that long ago, that there would have been enough real life experiences since then to stop over-medicating people with cancer!
Thank you for your advice as I venture into this treatment. I officially started this morning, but have already been using a pea sized amount of diclofenac on each hand and foot and slathering them with cream twice a day. My hands and feet have never looked and felt so moisturized!
I wish you well.
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When did people start seeing any type of side effect? I am on day 6 and am waiting for something bad to happen. Of course, not that I am wishing for it!
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Mine started about that time, but I was noshing on tons of folic acid foods. Hopefully you can curtail that.
I used lotions and creams from the beginning.
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Hi all. Looks like I'll be joining the Xeloda discussion. After almost 6 months on Truqap (capivasertib) liver numbers started to rise so MO thought it best not to miss the window of knocking it back down. I'll be reading through the posts for helpful suggestions. Hope everyone is feeling ok.
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@smallmoments Hello. I recently stopped Truqap and switched to Xeloda too. Truqap was so tolerable and I was sad to have to move on from it!
So far on Xeloda (7 days) I haven't had any side effects at all. You'll see I started at 3,000 mg/day. I have taken the advice of some experienced smart ladies on here and use the voltaran and a nice thick cream on my hands and feet twice a day just in case the hand-foot syndrome thinks it can bother me. I won't let it! And eat lots of pizza and ice cream! Ha, not really. Just avoid a lot of foods that are high in folic acid, including your multivitamin. That's all I know so far.
Good luck with Xeloda and I hope it knocks back your liver issues.
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thanks so much @dulcea . wishing you the best on this!
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@smallmoments Welcome and I hope that Xeloda works for you. I am definitely an advocate of eating high-folic foods ONLY in moderation. I have been on Xeloda for 7 years and the first 2 years were torture with bleeding and infected feet and hands. Then I finally remembered reading posts about the foods that were high in folic acid. Now my feet and hands are only dry.
I use Aquaphor at night on my feet with cotton socks, and on my hands with food service gloves. Aquaphor on my feet with socks during the day and Gold Bond diabetic cream on my hands several times a day.
I am on 2,500 a day at 7/7.
Be sure to take the pills a half hour after a meal and never on an empty stomach.
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Thank you so much @denny123 ! I'm not on the boards much but always appreciate seeing your posts. i can only hope to have that kind of longevity on xeloda and other treatments. Hope you're having a good week.
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Hi all, seeking some advice. I'm on to my 5th round of Xeloda. Hand & foot syndrome started in round 2; mild at first then getting a bit more annoying each round but no issues managing it by wearing UGG slippers whenever possible, 12% Urea cream, and using diclofenac gel only if it flairs up. BUT now on round 5 I have a new side effect — bad stomach pain. It happens about an hour after eating/taking my meds and lasts anywhere from 2-4 hours. So bad I can not function well or sleep during those hours. I've been chasing the pharmacist from my cancer center on what meds to take for this but still no call back as of yet. So thought I would pop on here to see if anyone else is/has experienced this and how you manage it?
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@dawn68 I have been on Xeloda discussion groups for my 7 years on it. And that is a new SE to me. I would stop taking the pills until you get an answer since it could be something else going on.
I don't know the SE's of Keytruda, so maybe that is the problem. I have stopped the pills many times in my 7 years, and it won't hurt to take a break.
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wow, i just spoke to the specialty pharmacy pharmacist and she said ideally I would have my own bathroom while on Xeloda! Not possible in my family's case but now i am concerned about my husband and 10 yo daughter.Has someone else been told this?
And for those celebrating this holiday, i wish you a peaceful, quiet time.
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@denny123 the pharmacist eventually called back and recommended I take my nausea meds and/or Gastrostop for the pain. Neither worked. I eventually took Tylenol for the pain which did work. Anyway I didn't take my Xeloda dose last night nor will I this morning just to give my system a break as that much pain can't be good. I'll talk to my Onco later today. As I've done 8 days of this round I'm hoping he gives the ok just to give it a rest for the rest of this round. I'm pretty sure it is the Xeloda as it is listed as a side effect and after skipping last night does & this morning dose, as of yet the pain hasn't come back. So weird that is was no issue at all for 4 rounds. Really hoping I can continue after taking a break. Did you take a break due to side effects?
@smallmoments I've never been told to have my own bathroom, even when on AC, and Xeloda is a much weaker chemo (& I've switched cancer centre's - neither oncos or pharmacists mentioned it). As long as you are sanitary, not sure why it would be a problem. We only have one bathroom at the moment so I'm sharing it with hubby and 2 teenage girls.
Happy Thanksgiving to those celebrating!
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Just an FYI there is a sign in the bathroom in my oncology center that for IV chemo patients to flush twice. Maybe because it's very concentrated at that point? That might be an option too if you are worried.
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@dawn68 I took many breaks in my 7 years. At first it was because my feet were so infected. But after I cut back on folic foods, when I have scans or fasting bloodwork, etc, I skip that day. I wonder if you have an ulcer or something else that the pills aggravate.
I remember reading once about putting pills into empty gelatin capsules to slow down the absorption. Wonder if that would help? Severe pains sound harmful.
@smallmoments I live alone, so that isn't a problem. But I agree to flush twice, or three times, even.
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Thanks @denny123 . The pain seems to be resolving itself after stopping Xeloda. I haven't been able to get in touch with my MO yet to let him know. After this round we had a planned delay for next round start date to Dec 23rd anyway (pause during holiday) so I'm hopeful that the extended break will give my system a rest and I can continue ok after.
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