All about Xeloda
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Dr Scholls exfoliating foot mask’s really help my feet when they get bad.
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Having read some other accounts of HFS, I think you must be doing something right, and I hope I will be as lucky if/when I get to Xeloda.
I agree that it's overwhelming sometimes to go from one SE to another and I think often that if the cancer doesn't kill me, the meds will, but I had a major lesson in perspective yesterday. I attended an on-line stage IV support group where most of the members are my age (60s and 70s), but there are two newer participants who described their situations. One is undergoing high intensity chemo in preparation for further treatment, and the other is contending with a systemic co-morbidity for which the doctors have run out of effective treatments - this is in addition to dealing with cancer. It made me heartsick when I realized that both of them are young enough to be my children.
I rarely post about the things for which I'm most grateful, because I'm sensitive to the fact that many members here are much younger than I am, but what keeps me going during the darker periods is:
cancer didn't find me until I was 69; MBC didn't develop until I was almost 72; Medicare covers 99% of the medical costs, including all but $2500/year of the obscenely expensive medications; I've had the tremendous gift of raising my children to adulthood and seeing them establish solid lives, including several wonderful grandchildren; I workout every morning and with careful planning, I'm still able to travel and visit friends, attend concerts and plays. I would rate my QOL as very good at this point, although we both know that can change in a heartbeat.
The recent disappearance of your liver mets is a miracle. I followed your posts as you struggled to find the best treatment and OMG you succeeded! Please take yourself out for an amazing meal or check into the best hotel within easy travelling distance and order room service. You so deserve a treat. ♥️
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Hi @denny123 ! Thanks for the welcome to this board. It means so much to meet all the women going through this process. Wow 8 years on Xeloda! And 24 years chemo! This is my third line of treatment in just over 2 years and hoping to stay here as long as possible. I have knock on wood, avoided side effects so far with the exception of fatigue, pretty nasty nausea and brain fog/agitation. Thanks for the folic acid reminder. I do moisturize my hands and feet constantly using Udderly Soft cream. So far so good on that front. Thanks again for your help here!
Hi @threetree ! So good to hear from you! Been awhile since we were on the Verzenio board. And now here we are. I am so happy to hear of the results you have had so far with Xeloda. Truly happy for you. Thanks for the info on SE’s coming and going. That is one of the many questions I have for my onc next week. It will be my first labs and follow up since starting Xeloda. So far I am the only one here I think that is 14/7. I start my 7 off tomorrow. Are there any “withdrawals” on the 7noff or is it just RELIEF?
@eleanora hi! I saw a response from you on The Long Middle post. What a great read that is. Covers it all pretty much. I think we used to chat on the Verzenio board too? I like what you said that you want to live long enough so that something else besides cancer gets you. Sometimes I have a talk with myself telling the cancer that it won’t get me. I accept it and don’t fool myself and also remind myself that there could be worse health issues to deal with.
I have a whole list of questions but won’t bog you all down with them unless my Onc doesn’t give me answers next week! Thank you all again and have a wonderful weekend 💛
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@eleanora and @marcials1 - Enjoyed reading both of your posts and will get back to you in more detail later. I'm having another very fatigue-y day, and feeling just wiped out.
Eleanora - I can relate to most everything you've said. I was 65/66 when initially diagnosed Stage 3B in 2018, and then I got the Stage 4 diagnosis in January of 2023, right after turning 70 in December; so similar to your situation. I have many things that I too am grateful for.
Marcials! - Nice to "see" you again too. My onc told me that many don't do the old 14/7 anymore because a study from 2025 showed that those who do 7/7 do just as well or better, and with fewer side effects. In my experience the week off is not a relief. You just stop getting worse. Also, you can have an extra bad first day or two of that week, as side effects apparently peak right after stopping. Sorry to have to say that. I will say that I do get a big psychological boost during that week though, just thinking about how I'm not putting that toxic stuff in my body for a week. Overall it's pretty tolerable though.
Hopefully more later - and many thanks to both of you.
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@aj - Thanks for posting the Dr. Scholls info. I'm going to make a mental note of it. I am getting some relatively mild redness and burning on my feet now (late yesterday and today), so keeping things in mind. I ate some pretty high folic acid food this past week (my off week), as something of a test, and I think it does help to limit that stuff, as I suspect that is what's caused this recent redness and more. I'm so glad to see that you have gotten a good 2 years with this, and I am wishing you many, many, many more years!
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@threetree I also ice my feet when they feel like they’re burning up
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@aj - Thanks for this tip too. My feet looked better today, and I'm thinking it's because I backed off the folate the last couple of days? Who knows? They never did get too bad, but a bit more red than they were, so I was getting a little concerned. Unfortunately, I think walking might aggravate the foot issues too; friction from shoes and socks, pressure from stepping on the sidewalks/shoulders, etc. Your two years with this is a definite inspiration for me!
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@threetree , I got blisters from walking too much. I went to a running shoe store and got fitted for shoes that were better. The real difference was the socks they sold me. They’re called feetures. Almost like compression socks. Haven’t gotten blisters since. Another hot tip.
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@aj - Love those hot tips - keep 'em coming!😉
Seriously, thanks for this. I checked out Feetures on Amazon and there are a whole bunch of styles and types; wow. I actually have some compression socks, but they are years old and I don't know that they have any compression left in them. I love to wear them though, because my legs don't ache then when I drive, etc. What's been happening to me is that my legs and feet get a bit swollen April through October, and then I can have some problems. The onc told me that the seasonal swelling is fairly normal. I sit at my computer a lot too, and that doesn't help with swelling, but then I go out to walk and then my feet hurt too, because the swelling makes them tight, even with the very old compression socks. I'm beginning to think I might need a pair of April-October walking shoes and then another for the other half of the season.
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@threetree I love my feetures. I hope you can get these side effects more under control! I’m glad your scans are showing improvement!
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Hello I have been reading through some of the uplifting comments on this thread and am hoping I do as well as lots of you are doing. I am due to start Madam X next week but not sure what dose or schedule until I see my Onc however I think I will push for 7/7 as that seems to work for some of you. I completed 7.5 years on Palbociclib & Letrozole followed by a year on Orserdu and another year on Capiversatib. I fear the HFS as I like to hike and have lots of pets. Also the folate issue worries me as I’m a vegetarian however my favourite foods are carbs & sugar.
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threetree & aj the FEETURES socks sound useful do you just wear them as socks or also inside boots etc. and are there different types and sizes?
I would like to put together a “chemo box”before I start X so any recommendations would be much appreciated on creams, hair products and any other tips etc would be very helpful. I have read back a few pages but to have a few up to date pointers would be very useful.
One important thing I have learned from this thread is going for a 7/7 schedule and also as low a size as possible. Anyway this newbie to X will really appreciate advice from you lovely ladies.
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Wow, 7.5 years on Palbo is great—I could only take it for a few months.
Welcome to this discussion .
After a couple of cycles of X, I quickly switched to 7/7, because of the fatigue. I’ve been taking it for a year and a half now, and the HSF are totally tolerable. I go on little hikes (about 2 hours), I adapt my rhythm and it works well.
Taking great care of your skin on your feet and hands is really important because it gets dry and that can cause nasty cracked skin.
I’m not vegetarian, but you’ll surely find ways to avoid getting too much folate.
If time allows, try to have breaks during the day so you won't get too tired; I've personally discovered the benefits of napping—it's a real pleasure. Exercising also helps maintain a good energy level.
I wish you all the best with X.
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soldanella thank you very much for the welcome and tips. It is so nice to find a thread with lovely knowledgeable people willing to share their experiences and offer help and advice.
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hi @chico and all, I have been on Xeloda since Jan - 3000mg 7/7 schedule. I just had my first PET scan since starting and all my bone lesions are responding and I had nothing new show up, what a relief!
I have had very minimal side effects on Xeloda. My nails are ridged and thin and I had a few start to separate at first but that has resolved over the last couple of months. I eat mostly vegetarian and have had no issues with HFS. I use lotion (whatever I've got) on my hands at night and do nothing at all with my feet. I continue to run regularly. My last blood work showed elevated ALT and AST. I have a repeat draw this week to check on that. I know elevated liver enzymes are a listed side effect but I'm hoping they don't go high enough that I have to reduce dose.
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mozuk1 thank you for sharing your very good news and minimum s/e. I hope that your ALT & AST results are just a blip.
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@denny123 @threetree @elanora
Hi - I sent a post to all three of you but I don’t think it got posted? So just a shortened version:
@eleanora I think we used to chat on another board. Hi and thanks for all of your info!
@denny123 Thanks for the welcome to the group! 8 years on Xeloda gives me hope. Thanks for all your info.
@threetree Good to hear from you! You were always so helpful on the Verzenio board. Hope you are as well as we can be.
Anyway Xeloda is tough for me but I am trying to adjust.
Sorry I don’t know what happened to my other post and if this is a repeat well so be it! Best to us allMarcia
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@marcials1 - Hi Marcia - Your message did post; it' s back up the line a little bit, and I sent a reply that I've been hoping to expand on a little bit at some point. I'm just starting my week off, so maybe in the next few days I'll get enough energy to say more.
I'm really sorry to hear that Xeloda is being rough on you. What dose and schedule are you on? What kind of side effects are you experiencing?
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hi @threetree thanks for getting back to me! I couldn’t find the message that I had sent just thought that I had never posted it. I don’t mean to be a pain in the butt… Thanks for getting back to me. No need to answer back. I understand that we all can do it only when we are up to it.
I am on 3000/day for 14 days. Then off for 7 days. I have really bad nausea, extreme fatigue, and pretty extreme brain fog. Kind of like I’m in some other world. I started taking some nausea meds, but gives me constipation. And then I have to battle that. You know how it goes one SE turns into another SE. But now that it has spread to my peritoneum, I think I need to be checked for some kind of blockage. Oh the joy. I’m still not going to give up on it. I’m thinking I will grow accustomed and get it figured out. There has to be a balance that I haven’t figured out yet because I don’t want to go off of it and start a fourth treatment. So would love to hear from you but only when you feel up to it. I totally get it. Thanks again.Marcia
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@marcials1 - Any chance that you could switch to 7/7? My onc noted a study when he did his chart note, that was from 2025 and it apparently concluded that 7/7 had people doing just as well or better than 14/7. Personally, I don't think I could do 14 days straight with this stuff. I am always very wiped out at the end of 7, and really welcome the week off, even though it doesn't bring any major relief, it is enough both physically and psychologically, that I think it allows me to continue.
I'm glad to hear you say that you're not ready to give it up! It can take awhile to both get used to it, and to see some positive effects. I started in mid January, and it was my scans in mid April (CT and bone) that showed the good progress. I eat probiotic/organic Greek Yogurt every day and also fresh probiotic sauerkraut. I think it has helped me not have mouth sores or much gut trouble - even back with the Verzenio.
I can really relate to your "other world" inducing brain fog. I have something very similar and I think it's why I can't always respond on here as much as I used to. It carries over into all aspects of my life. Sometimes I'll see the phone ringing right in front of me and I just sit here and stare at it and don't answer - even when I know the person and would normally pick up. In the same way, I can read posts on this forum that I would normally respond to, but instead I just sit here and think that maybe I'll respond later, and then I never do. My walking is also "infringed" by this drug. I can do much better on my week off, but on my week on, I can't go as far or as long as usual. It's still far better than any alternative, so I'm putting up with it and gradually adjusting on some level. I am very pleased that to date at least, I've had excellent results. My bone lesions have healed or whatever they do, and the 10 spots that were on my liver are no longer visible on scans. It's not a cure, but the medical people are telling me it's a real significant event, and I continue to try to let that in. Again, putting up with these side effects so far beats anything else that would be next.
I do find that pacing myself (something that is very hard for me) helps a lot. I'm referring to what you mentioned about household chores and fatigue/brain fog. I will force myself to sit down or sit up in bed and read or something for maybe half an hour, and then I get up and wash some dishes and pick up a few things, and then I go back to a sitting/sitting up type situation and just read and/or like you say plan out my other activities, etc. I then rinse and repeat. Sometimes my pre-planned activities are things like taking a shower, driving to the store, taking a walk, and doing things around the house; paying bills, returning calls, etc. I usually plan a "main" activity for both morning and afternoon (e.g. shower in the morning, walk in the afternoon; dishes and return calls in the morning, walk in the afternoon, etc.). Oftentimes doing something like going to the store will negate the ability to do the walk; I have to swap some things out sometimes for other things, and just live with it.
I hope some of this helps with some of your issues and questions, Marcia. Sorry to see that you too had to move to this thread, but glad also, if you know what I mean.
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Hi @threetree you hit on so many points. The 14/7 is not easy. It’s hard to medicate yourself - putting something into your body every day that you know is going to make you feel downright crappy. I’m going to ask my onc about the 7/7 schedule. I think she wants to be really aggressive because I have so many issues in my abdomen right now. I have no real definitive dx … maybe gallbladder, maybe bladder, maybe peritoneum… So I’m just going to let it go for now and next time I see her in June I will try to pinpoint what her plan is. I had so many questions this time I couldn’t get to all of them! But very interesting what you said about the 7/7 being just as beneficial as the 14/7. It was kind of like that with Verzenio remember? The higher doses weren’t necessarily more effective than the lower doses in many women. And I agree the seven days off don’t necessarily feel like a vacation, but it is somehow psychologically easier to get through the day.
I do the same thing with my day as you do. I usually start with getting any leftover dishes done. Then I sit down and rest for 15 minutes or more. Sometimes look at my phone, sometimes watch TV a little bit. Usually try to catch up on some emails, check on upcoming doctors appointments to confirm blah blah blah! I don’t look forward to going out to the grocery store or the post office, etc. But usually once I get out there, it feels sort of nice to feel like everything is normal. Once I get home, I have to sit down and end up falling asleep sometimes. But when I wake up from a nap is when I feel really bad brain fog. I have to think for at least 30 seconds about why I was sleeping, where am I, what day is it, etc. It’s really bizarre. I try not to nap. But sometimes it just takes over from the fatigue.
I am really happy to hear that you are having such positive results! It’s such a nice feeling when you leave labs and follow up to hear good news. It makes for a nice respite from all of the down and outs!I’m still able to go for my walks most of the time. If I feel absolutely miserable nauseous then I don’t go, but if I feel just a little nauseous, I force myself to go. I usually make it for about 2 miles. I do have to be better about my diet. It got kind of out of hand for the month plus that I was not on any treatment. That was when I was supposed to go on a clinical trial, but I got kicked out because of my liver enzymes. That was both exciting and scary to be going into a clinical trial. Maybe it just was not meant to be.
Thanks for all of your info. It definitely does help. Please keep me updated on your results and I will do the same. Oh and yes I know what you mean about it being a good thing to be here on this thread.
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I start Madam X next week has anyone experienced hair thinning? I read somewhere that LED Red Light Caps can be useful however obviously these products may be contraindicated with X or hopefully not necessary.
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@chico - I have noticed my hair thinning even more than with Verzenio and fulvestrant. I've been on Xeloda since mid January. I've never heard of the LED Red Light thing. Please keep us posted if you learn more. Best, best, best of luck as you start the Xeloda - may it serve you well for a long, long time!
@marcials1 - I know just what you mean about how hard it is to put something in your body that will make you feel awful. It totally goes against the grain. That's why the week off does give me some bit of a psychological boost if nothing else. I also understand about your doctor wanting to be more aggressive, due to the multiple areas of issue that you have. My onc had told me that if my scans looked good, he might consider a dose reduction from the 3000. Well, my scans apparently looked great, but he didn't mention making any dose changes, and I actually chose to not pursue it myself, so didn't ask him about what he'd said previously. I would love to reduce the side effects, but since the 3000 seems to be doing so well, I'm hesitant, no matter what the doctor thinks, to switch. I don't want to rock this so far excellent boat. I read somewhere on one of these threads, that someone had gone from 3000 down to 2000 or 2500 (can't remember), but then did progress a bit; went back up to 3000 and re-stabilized. That situation sticks in my mind and also makes me reluctant to do a dose reduction.
Glad to hear that you are still able to go for walks. I too often go for about 2 miles, but I love it when I have more energy and can go up on a hill in addition to my regular walk, and make it 3 miles, along with the added incline of the hill. Xeloda has cut into my ability to do that extra and I don't like it at all. It had become my main walk all last year. The RSV I had all April didn't help. I'm trying to work back up to it, and am hoping to tackle some of that hill, at least later this morning.
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hi @threetree having the week off is definitely what gets me through. Even though I felt only a little better. I just started back on Saturday and today is Wednesday. I have to say I feel better on this 2nd round. I’ll take it! I am not going to ask for the 7/7. I’ll keep going with the 14/7 and hope for some results. I know what you mean about not rocking the boat. My tumor markers were high last week but will see how they are in June. How often are you getting scans? I was on a 3 month and assuming it will be the same on Xeloda. I will try to remember to ask when I see my onc next month. It’s all getting more confusing with additional side effect meds….and the brain fog doesn’t help. I just keep trying.
I did do a few walks last week ~ two for 2 miles and two for 1.5 miles. I have to force myself where I used to look forward to it. Once I get out there I do enjoy it….just takes the effort to get going. I have one small hill I have to do just before I get back to my car! There is no avoiding it!Hoping you feel good this week and get in those hills!
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Hi ladies! Sorry to be absent lately. But it is spring and garden-planting time in PA! I can only do so much, and then have to come inside to rest.
And my postprandial hypotension has gotten much worse. That happens every time that I eat. The blood rushes away from my heart to digest the food, thus making my BP drop as low as 75/45. Then I am like a zombie and can only sit in my recliner or just go to bed for a nap.
And I developed a blood clot in my right uppper leg. I had no idea that it happens often with chemo patients! So now I am on blood thinners.
Actually, our week off Xeloda should be worse because then we have the accumulated dose working in our bodies. But I am glad that you two are able to take walks.
And also remember that we need to cut back on our high-folic foods. This is not only to curtail the hand & foot problems, but also the high-folic foods can make our pills less effective.
Denise
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Over two years on Xeloda. I just got scan results and lung mets are pretty much gone, just down to a couple of nodules! Bone Mets are healed and liver mets are stable! Hail Xeloda! And Faslodex! I was absolutely sure that this time there would be progression because my tumor markers have been creeping up. MRI next week to see what the brain mets are doing.
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Wow aj this is such good news and has certainly given me a boost so thank you. Wishing you good luck with brain mri results.
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Appreciate all the advice and your coping with this drug….threetree I couldn’t figure out why sometimes I don’t want to answer the phone..go grocery shopping etc. I have a pet scan coming up the 2nd week in June…a little nervous…have had some pain in different areas..also I have lung nodules and have a terrible cough on and off…congested with sinuses…all of you are so helpful….thank you
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@aj93 Hail Madam X…. great news!!! Fingers crossed that MR shows stability also.
@denny123 Ugh so to hear you had some issues with BP drops and the blood clot! Glad you are on the mend and I hope you enjoy your gardening.
I'm still riding the Xeloda stability wave too…will be 4 years this summer still being on my 1st line therapy. Needless to say I am grateful to Xeloda too! I may not post on this thread often but I always read along, wishing everyone continued success with X.
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