Xeloda Experiences Please?: My wife is... - SHARE Metastatic ...

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Xeloda Experiences Please?

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My wife is starting to show progression on Talzenna so we’re about to start Xeloda as monotherapy, 1,000mg twice a day. Probably will start with 2 weeks on, one week off. If toxicity becomes an issue we’ll likely try one week on one week off.

The literature and studies seem to be all over the place on dosing guidelines, and the median PFS numbers are disappointing. While I’ve seen a few posts on how to deal with hand foot syndrome, I haven’t seen much on dosing, overall quality of life, or how long Xeloda has staved off progression for those who are taking it. I’m hoping to hear that at least a few of you have had a year on Xeloda without progression?

All feedback would be greatly appreciated, good and bad. Thanks!

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ndastrogal profile image
ndastrogal

Hello. Dosage is determined by body surface area (BSA) initially but dosage is often adjusted. I started in August of 2021 with a dosage of 4000 mg per day, taken in two doses. I was on it for 14 days then off for 7. I got horribly ill my first week off, ended up in hospital for 6 days and had dose reduced to 3000 per day, 7 on, 7 off. I'm in my 9th month and doing well. I have bone, liver and brain mets. Bone has seen slight improvement, liver more so - some lesions disappeared. Brain stable, no change. For me it's very tolerable. I have some HFS but can keep under control with lotion and careful choice of footwear. There is a Facebook group of only Xeloda users that has lots of helpful info and stories. Don't be shy about asking for dose reduction if side effects are bad. Best of luck.

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Half-Full in reply to ndastrogal

Thank you very much for the feedback. I’m not on Facebook but my wife is so that will likely be very helpful for her.

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Cureforever in reply to ndastrogal

Hi. What is your foot and hand syndrome. How it looks like. I have been on Xeloda for months but today I noticed two blisters on my thumb finger. Thank you Marina

ndastrogal profile image
ndastrogal in reply to Cureforever

The bottoms of my feet get bright red and sore. When I walk it feels like something is in my shoe, under my toes. My feet swell at night if anything confines them. Only thing I have on my hands is tiny little bumps in my palms that itch insanely. My Dr thought this was HFS related. Skin under my nails and toenails peels off. Redness on feet get better about day 5 of week off, just in time to start again!

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Cureforever in reply to ndastrogal

Thank you for sharing. Do you have blisters on your hands? I just got two blisters on my thumb and I do not know if it’s Xeloda related.

ndastrogal profile image
ndastrogal in reply to Cureforever

Haven't had any blisters but from what I've heard any kind of issue having to do with hands or feet while on Xeloda is likely HFS related. Not certain, but likely.

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Cureforever in reply to ndastrogal

Thank you so much for sharing. Best to you

Marina

Georgiamjb profile image
Georgiamjb

I've been on Xeloda for 7 weeks and have already seen my tumor markers come down. I take 3,000 per day, one week on and one week off. I have the side effects of nausea and fatigue. But so far, so good. I wish you all the best.

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geewisdom

I've just started Xeloda like your wife. I'm 6 days in and have only noticed some ankle swelling. Everything else so far doing ok. I have bone mets and some spots on lung, pelvic. I'm hoping that Xeloda helps to clear thing up. I take a total of 4000mg per day. 4 tablets in morning, 4 in evening at 500mg each.

We'll get through it!

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Half-Full

Thank you for your replies. Seems like my wife is being started out on a low dose (1,000mg twice a day) but she’s had issues with toxicity with other drugs so maybe for the best. We’re trying to get her tested for DPD deficiency before we start to be safe. Currently held up with insurance.

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