I listened to a presentation summarizing reports from ASCO 2023 related to MBC, and what really interested me was that for Xeloda, a fixed dose taken one week on/one week off, produced as good results as current standard of care with fewer side effects. Also: cream form of Voltaren/diclofenac is apparently very effective treatment for HFS. (I haven’t been on Xeloda but it is definitely a candidate going forward, so this is very useful to know.)
(It won’t let me post the link, so I’m pasting the description and you can search for it if you want to view the presentation)
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HelenWi
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When Xeloda (capecitabine) was first approved, it was understood by many (BUT sadly NOT ALL) that it was such a high dose as to cause fast and terrible neuropathy. FDA told me and Musa Mayer, author and early advocate for those with advanced breast cancer, that they couldn't act without a new clinical trial. Hearing that there is work being done to lower the dose and change the schedule makes me happy. My work is gathering info on reducing treatment toxicities and improving how we feel. Lifestyle issues, Complementary therapies and Holistic approaches. We have a downloadable PDF on our Annie Appleseed Project website that offers these evidence-informed ideas.
I've just started Xeloda with the one week on , one week off schedule. It is actually a slightly higher dose (1500 mg vs 1250 mg) but of course you take many less doses over time with the new schedule. I've only had one round so far and they will be dropping it by 500 mg as I'm already showing some symptoms. Too soon!
I’m so glad to hear this. It is also in my future and my genomic testing shows I have a sensitivity to it so it will be a rough ride. A reduced dose will be helpful.
I have been on xeloda for nearly 9 months one week on then one week off… scans have been good with liver Mets decreased and markers down to 140 from 450… but the HFS kept me from being able to walk my dog and sometimes even walk around the house… I stay fit by swimming 400 yds/ day and biking on my e-bikes as often as I can… I recently was asked to reduce my dose because of HFS.. now on 2000 mg and feet are better… my advice try to keep moving and try to find a dose that won’t kill your QOL. Good luck!
I’m so glad Xeloda has been good for your mets and that your feet are better— because not being able to walk your dog is quite a hardship. Have you tried the diclofenac? I don’t know whether this is a new use of it. It’s supposed to work great for arthritis.
Sounds like you are in great shape, Beth. I’m impressed with your workouts!
Hi Helen, it’s been a struggle to keep moving and fitness when I couldn’t stand very long or even wear socks or shoes.. but this lower dose has allowed my feet to feel better. And I feel pretty good overall.. I did try the diclofenac but I would feel the alcohol it contained burning my feet so it wasn’t for me… I think in the study they used new pts who didn’t already have HFS and it prevented it… but me with my sore red feet couldn’t tolerate it. Hope it helps others!
I'm on my 6th 28 day cycle with Xeloda, 1500 mg twice a day, one week on and one week off. The routine described at the meeting... No side effects and fully recovered from side effects of Ibrance with letrozole and Kisqali with fluvestrant. Those combos had stopped working, I had low WBC and absolute neutrophils, skin rash, hair loss within the first six months of Ibrance, and extreme exhaustion. Hair is starting to grow back and I don't need an afternoon nap.Now, my hope is it will work. Largest liver mass down to 7.1 cm and CA 27-29 down to 1277. Fingers crossed and hope for you that it works for you.
PS my onc cautioned me to put lotion on hands and soles of feet beforehand and no HFS apparent.
I am also please not to be fatigued on xeloda! And how lucky you can tolerate such a big dose.. I’m recently dropped to 2000mg per day… I started at 3000’g then dropped to 2500mg… and now at 2000mg, I think I can manage. Every one is different…. It was working well at the higher dose and I tried hard to remain on it but gave it… hope this smaller dose keeps working.
I just started and I've only done one week on, almost one week off. I will have to drop from 3000 mg daily to 2500 mg already after the doc saw, and was surprised, I am showing reddening of my soles so soon, and also got red around my mouth and inside my lips, and itchy eyes! Besides all that and fatigue I'm ok, lol. How are you going at this point? I'm hoping this drug reduces my liver mets size too
Hi 13plus. I felt good the whole time I was on Xeloda and had no HFS. My onc advised me to put lotion on the soles of my feet at the outset, which I did every 3 days, and never experienced side effects. Unfortunately, Xeloda didn't work for me and my recent scan shows my liver mets is back to its greatest level thus far, which was in July 2023. So, I'm moving on to a doxil infusion once a month. The onc first recommended taxol infusion 2 weeks on one week off but my choice favors quality of life.I hope Xeloda works for you, without major side effects. Best, Gwen
Hi everyone, I have now had several rounds of Zeloda, side effects are muscle and bone pain, doable, better when on the off 7 days! Start again on this Wednesday, dec 6th
Apparently diclofenac/voltaren cream may help prevent HFS but once you have neuropathy (also micro swelling, thin and dry skin on feet which peels and cracks) as a consequence of Xeloda, this treatment does not help. Wish it did! If any of you have used it successfully as a treatment for hfs please let us know.
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