Xeloda

[1glajon]

I’ve been on Xeloda for one week now and so far so good. 1,500 mgs in the morning and 1,500 mgs at night. I take Zofran 30 minutes before I eat. My question is when will I feel more side effects? I’m going to be 2 weeks on and 1 week off. How soon will I know if it’s working? Hope everyone is doing well!!

[Browniem]

Hello

My wife has been on the same dosage since March. It has been very effective in shrinking some Mets in liver and lungs. She uses creams on her hands and feet and has avoided HFS symptoms so far. The major side effect has been fatigue which she finds manageable. Best wishes

[1glajon in reply to Browniem]

So glad your wife is doing well!!

[Bettybuckets]

I’m surprised they added Zofran? For nausea… did you have any N&V? From the package insert it is more likely to expect issues with HFS. I was told last Xmas to not expect problems with my hands and feet for a several cycles but with in a week I was hobbling and had blisters my toes and took me a month to recover. I too was feeling like this is a peice of cake. So I played pickle ball (a lot) while I waited to feel side effects. I ended up in a wheel chair which was very humbling. I could not walk through an airport on my sore blistery feet. Like many people, I had to dose reduce to lower dose and am now on a one week on, one week off which is now popular since if is effective and tolerable.

The best advice I can give you is to try to get find a sandal or shoe that is smooth on the bottom…I had to give up sneakers as too tight… even after buying 2 sizes bigger…each night I put 5% urea cream on my feet and then put gel socks on to let it soak in. I now try to stay fit in non weight baring exercise like swimming and biking. My walking the dog has stopped and sometimes it hard to even walk around my house do to sore feet… but that usually happens when I make the mistake of standing up and visiting at parties- which I love. When I do that my feet become angry and red. I should just find a comfy seat, and put my feet up and hope my friends will wonder over to talk with me… but I hate giving off a sick vibe when I can mostly fake being perfectly healthy.

But try to get a bar stool in your kitchen for cooking and prepping.. if I I do all of that and don’t walk a lot or stand a lot, and cream my feet each night, then you won’t get the cracks in your feet that I have heard are even more painful… except for not walking as far as I used to, this has been my fav treatment over the 2 CDK4-6 because I have no fatigue or any GI symptoms so I just go go go. The other tax made me feel fatigued and some diahrea etc. Plus- it is working on my cancer pretty well so far for 8 months so I am hoping to continue with it. Don’t get lulled into thinking this is a benign drug…I’m taking every precaution to try to stay on it as is is a pleasure to be able to take oral pills and be able to go away when I want to…. Vs being tied to a IV schedule which will be up next.

This was my feet after I attended a gednder reveal party, an 80th Bday party and then my block party the next day… it was all too much!

HFS from too much standing on my feet at parties

[love2golfwell in reply to Bettybuckets]

Your poor feet, they look so sore. I am so very sorry you are experiencing this. Does anyone know why Xeloda causes this? I'm glad you don't have any GI symptoms as that would not be fun. Take care of yourself. Hope your feet feel better. Sending hugs.

[1glajon in reply to Bettybuckets]

Thank you so much for your feedback!! I greatly appreciate it! I had a few areas in my lung that were not responding to ibrance anymore. Bones etc were fine no knew lesions!

[mariootsi]

I hope you don't get side effects!

[Chamisa]

I’ve been on Xeloda for seven months. It has not been hard. I’ve had no nausea, which I did have on Ibrance. After my first checkup after Xeloda, my onc switched me to a week-on, week-off schedule (taking 3500 mg daily) to keep my hand-foot syndrome from getting bad. Just this week they dropped me to 3000mg daily because my platelets were getting too low. I actually didn’t want the dose reduction because Xeloda at 3500 mg has worked so well at beating back my cancer. ( I was diagnosed with multiple lung, liver, and bone mets and Xeloda has worked wonders. Ibrance only worked on my lung mets.)

[Bettybuckets in reply to Chamisa]

I understand not wanting to take a dose reduction when it is working! I didn’t want to take a 2nd week off but my Dr insisted to get a handle on the HFS.. I can’t believe you tolerated the 3500 dose! I had to do 2000 for a long stretch and now he has me alternated 2000/ 2500 mg every other day for my week on drug…. And tonight I got word that my Ca 27-29 is stable.. it started at 500… went down to 250 for a few months and now this is the 2nd month in the 140’s.. might be as low as it will go. I’m glad to be able to tell you… those values and our worries don’t mean much to our well friends. Thanks for listening!

[Fiercefighter13]

Hi there! I've been on Xeloda since January and it's the first medication that has worked like a "home run" for me. My feet hurt something awful, but no blisters or sores. The first couple of months I suffered from extreme fatigue but having a cup of coffee in the early afternoon seems to have taken care of that (better than Ritalin, go figure?). I have not had any other side effects and my markers are normal for the first time in 4 years (none of the CDK inhibitors and/or endocrine therapies were able to do that). There is a shortage of Capecetabine world wide right now, so keep close contact with your pharmacy to make sure you don't have to miss any months of dosing! Take care!!

[1glajon in reply to Fiercefighter13]

Wow thank you so much for your positive response!! So glad you’re doing so well!!

[Widdershins3]

I want to thank you for starting this thread. I just had my worst day yet on Xeloda--super painful open sores plus cracks appeared on both feet and on the fingers on one hand. With more pain than I've felt since being on it for a few months and having a dosage change, I'm getting worried.

I use dicoflenac gel and 40% urea cream, tried bandaging the sore digits and not bandaging and I still have truly terrible foot and hand syndrome. Without my 4% lidocaine gel, I don't think I could stand it. It's preventing me from taking my walks, working in my garden and also from being consistently able to do my artwork and is beginning to cause me anxiety and even some depression.

I'm hoping that my oncologist moves me to a 1 week on/1 week off schedule and that it helps. I loved being on Enhertu and it lowered my cancer numbers enormously, but I developed "ground glass opacities" and was switched to Xeloda--so much really severe pain!

[Chamisa in reply to Widdershins3]

Try making sure you don’t eat high folate foods or take folic acid supplements. Evidently that makes Xeloda side effects much worse. I got that tip from this and another forum. When I tell my oncologist or nutritionist they really downplay the connection and tell me it doesn’t matter if I eat those foods. But I have to say that it has actually made a difference to me personally, even if the professionals don’t think it helps. 🤷🏻‍♀️ It might not help you but it’s worth a try.