All about Xeloda
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@bigred62 …that's interesting that your markers dropped. My CA 27-29 have never been accurate, so they are ignored. My 15-3 have shown as normal. When I started Xeloda and Herceptin, my previous chest mets were apparently gone.
My hands and feet protested immediately and I wasted sooo much money on bandaids, ice socks and ice mittens since I was so miserable. But I was also on a spinach and broccoli kick. Duh.
Keep us posted!
I am waiting to see/hear the results of my CT scan from yesterday.
Denise
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@bigred62 - Thanks very much for detailing how you've been experiencing/dealing with the stuff like diarrhea, fatigue, nausea, etc. It's a big help, because I'm just so nervous. They say my prescription was approved, so now I'm just supposed to have a session with the pharmacist this week, and then await a delivery of the drug. If you are managing to play pickleball, I would think you are not too troubled with fatigue, and that is encouraging. Also, I'm going to be starting with 3000 a day, so a little less than what you are taking; hopefully that will help. Interesting about the neutrophils. I was taking Verzenio before ("sister drug" to Ibrance, so I'm going to watch and see if they go up, now that I'm off of it. Mine only seemed to ever get as low as about 1.5 though. I already drink ginger tea for occasional nausea from the drugs I've been on, so maybe if I just continue that, I can take care of that problem too, if it arises. I'm really glad to know that you're not having too bad of a time with it. I hope it serves you well for a very, very long time!
@denny123 Re the constipation problem you've noted, have you tried any "natural" laxatives like dried fruit. Honey and extra virgin olive oil are good too. Gentle results and not all the harshness and other things that accompany OTC laxatives. I've also found that taking a good walk can often be the best laxative in the world. Just some thoughts and ideas for what they're worth.
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@threetree…I started the constipation on Kadcyla and tried it all. Some ladies say to drink more water or a few prunes. (LOL) I tried everything, including a half box of prunes, etc. Finally found Phillips MOM to get started and then Miralax & stool softeners….which I have been doing for 11 years!!! They are not laxatives and approved by my GI doctor. I just had a colonoscopy and my doctor said that I have a nightmare colon which is all twisted and was darned impossible to navigate. And that contributes to my constipation.
But thanks for the suggestions. It is now time for my Miralax fix….ugh. BTW, dried fruit is high in folic acid….and I do miss it. So prunes would destroy my feet. (especially half of a box).
I don't know if I mentioned it, but the reason that I am out of breath all of the time is because my left diaphragm is partially paralyzed (thanks to my chest node mets). Otherwise, I would love to try pickleball.
But hopefully spring will come soon and I can't wait to get outside to plant my gardens!!!! Yardwork and fresh air..whoopee!
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@threetree This is a great forum for all things Xeloda and we are all at different stages of the journey 😀
It's wonderful having everyone here with such great knowledge to help us through this so please feel free to message me any time you have a question and I will do my best to answer it.
Keep us posted once you get started and as @denny123 mentioned we all handle the drug differently but can still help each other handle any side-effects 🩷 I'm 63 and have been on this roller coaster for 30 years so far!!
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@bigred62 …wow to 30 years! I often marvel that I have been Stage 4 for almost 1/3 of my life since I am 76. I found this forum in 2003, when the internet was in its infancy. Facebook wasn't even started yet! Back then, I don't remember having these specific forums. I participated in discussion groups and we were all on different treatments.
Then I found BCmets online and that is where I found out about Gemzar and Herceptin, which were both new back then. I had read on there about a lady whose liver was hugely swollen with liver mets and it was getting better on the "new" chemo Gemzar. That afternoon, my oncologist gave me the choice of 3 clinical trials and one was Gemzar & Herceptin, which I chose. At that time, I only had statistically a year to live. So I sure did make the right choice!
Denise
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@denny123 - Thanks for the comment about dried fruit being so high in folic acid. I had not known that. I've started this whole business thinking that 90% of what I eat is on the high folate list and it seems more true all the time. I think I'm going to really have to overhaul my diet. I eat a lot of dried fruit, not for the laxative properties, but just because I like it. I eat prunes every day and again, not for a laxative thing, but because they have a lot of boron and boron apparently really helps get the calcium you eat actually to your bones where it's supposed to go, rather than letting it sit in your arteries, etc. It'll be hard to let that go. Oh well, we shall see. Thanks again.
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Glad you made the right choice 🩷
I have only been stage IV for 18 months but had my first bc diagnosis at 33 and I remember being the youngest person in the waiting room and thinking why am I here! They had a clinical trial for Tamoxifen for younger women as they were only using it for post menopausal women at that time in 1995. I was told by a family friend who was a doctor to ask for the drug but not to go in the trial so I did and they couldn't refuse me as it was Government run and so they gave me the drug and soon after they shut down the trial and put everyone on it as it was working. I learned that I had to be my own advocate going forward.
I had my first recurrence at 44 and my last one at 62, I have always handled meds well and hopefully can stay on Xeloda for a long time.
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@threetree It will take awhile to get used to eating the right stuff. (Prunes are one of the few things that I hate). I eat several high-folic things a day, but not nearly as much as I used to. And I know that whole grains are good for me, but I don't eat a lot of bread anyway.
When I was on Kadcyla for 2 years, I lived on mashed potatoes and buttered noodles…..a very poor diet. But it helped my constant nausea. So I know that I just have to adapt to whatever chemo that I am on.
@bigred62 As soon as I was dx'd, I joined an area BC group, which I later ended up running. And the youngest girl was only 27 when dx'd. It is really sad that more and more younger women are being dx'd, but I really don't know the reason. At least the fact that the mammograms are more accurate, is helpful. You sure have been through a lot!
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@denny123 That's fantastic news 🩷
I saw my Oncologist yesterday and all my tests were great including the extra lliver tests.
We talked about putting me on the 1 week on 1 week off protocol next month so I would be getting 3000 a day instead if 3600, he brought it up suggesting it's easier for lifestyle and gives your body a break with less tests and visits so I'm all for that 😀
I hope to be able to stay on this as long as my body behaves and as long as possible!
You have done amazing and I want to follow in your footsteps. 💓
Jill
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@denny123 : Fantastic results! I'm so happy for you. Just a little more patience for the vegetable garden.
@bigred62 : Congratulations on your results. Yes, I confirm, taking Xeloda for one week followed by a one-week break is much easier to tolerate. I started at 3600 mg per day for 2 weeks of treatment and I was very tired. On this forum I learned a lot about the possibility of switching to a 1/1 alternation without loss of efficiency. I spoke with my oncologist and we we reduced it to 3000mg/day and 1/1. I have been taking it for over a year, my scan results are very good, no progression of the disease and markers are decreasing. I wish you much success with this treatment..
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@threetree , My MO always gives me a prescription for side effects meds and recommends to fill it in before starting treatment “just in case”. When I started Xeloda, she prescribed anti nausea, anti diarrhea and even an antibiotic. I use anti nausea med few times, esp in the first few months of treatment. It does not bother me much now. I started to experience more digestive issues lately but so far they could be managed with diet (i now include probiotic foods, like daily natural yogurt or skyr and I add fermented foods (kimchi, sauerkraut) as a small side dish couple of times a week. I have days when I am fatigued and need a nap, but then I have good days too, so I just take it as it comes.
My starting dose of Xeloda was 2000 mg/ day, two weeks on one week off. I had a really bad progression in my liver in February 2025 and my live panel values were so out of whack that my MO was afraid to put me on a higher dose. After a month values started stabilizing and my MO and I decided to take the risk and to increase the dose to 2500 mg/day. This is still only 60% of what would be my full dose, but it worked wonders: CA15-3 plummeted and PET scan in June confirmed a remarkable decrease in liver mets, To bring my hand food syndrome under control, we changed to 1 week on / one week off protocol, same dose, as of July 2025. I achieved NEAD by September ( 6 months of treatment).
Interestingly, at the December check up, my MO suggested to reduce the dose. I did not dare to and she kept me on 2500mg/day for now, but she also reassured me that “if it works, it works, even at a lower dose”.
Wishing you good luck, quick response and mild (or no) side effects.
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@lacombattante - Oh, thank you so much for such an encouraging and comprehensive summary of your experience with liver mets and Xeloda! This is a big help. I have all the anit-nausea and anti-diarrhea drugs here already and the fact that they thought I might need them is terrifying. I have to say though, that I was given similar drugs when I started Verzenio and I wound up never really needing any of them for the whole 2.75 years I got with that drug. My Xeloda is supposed to be delivered by some kind of courier today, so I am anxious about that. Apparently they can't just send it in the mail like the specialty pharmacy did with the Verzenio. This actually comes from my clinic and has to be signed for every month and they can't put it in my mailbox or locker. I don't get it, but they say it is for legal reasons. I'm so glad to see that you are doing so well on the Xeloda. It helps me a lot, because I see so many on here that it only worked for briefly or not at all. Yet there are those who are getting several years with it, so that gives me some hope, at least for now. I'm also glad to see that you eat a lot of probiotic food and think it helps with the digestive issues. Even before I started Verzenio, I was eating a small side serving of fresh sauerkraut every day, which I've continued to do, and I also have an afternoon bowl of probiotic yogurt with fruit and nuts in it most every afternoon. I think that saved me from a lot of the diarrhea problems that so many get with the Verzenio. That never really was a problem for me, thank goodness, so maybe it will all help with the Xeloda too. I'm also glad to see that you are successful with the one week on, one week off, schedule. So many seem to find that much more tolerable and my oncologist thought it would be better for me from the get go, since I am pretty prone to side effects. I'm to start with 3000 mg a a day. He says that although it is a low dose, it is "very effective" and that would appear to be borne out by your experience with the relatively lower doses and time schedule. I really appreciate you taking the time to describe your experience in detail. It is very beneficial to me. I wish you nothing but the best of luck as you continue with the Xeloda and I hope it gives you years and years to come!
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@bigred62 - Bigred62, congratulations on the good blood test values! Good luck with Xeloda - hopefully it will bring you to NEAD and keep you there for a long time - @denny123 is a shining example :-)
@soldanella - Soldanella, I am so happy to hear that you continue to do great on Xeloda. Come to think of it, it was your and @denny123 posts that prompted me to discuss change of the protocol with my MO. And… we seem to be almost neighbours! I am in Switzerland too. Now that I retired, we moved live between Geneva and Lausanne and my son and daughter in law live and work in Geneva. Small world!
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@lacombattante: Yes, it's a small world. I live in Lausanne and enjoy a small rental in the Haut- Valais. This forum is the best I have found; it helps me a lot in my understanding of stage 4 and the various treatments. Thank you for your posts.
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@lacombattante Thanks! It's interesting about sauerkraut and I have been eating it after reading about its benefits. I found a recipe for sauerkraut salad, which is sauerkraut, chopped onions, peppers, celery, carrots and apple. The recipe calls for 1/4 c of vegetable oil, but I like to substitute applesauce for oil and I add a bit of sugar. It's healthy and even freezes well.
I saw my oncologist today and I will continue with my Herceptin every 3 weeks and 2,500 of Xeloda at 7/7. My platelets are back up, TG. But my red cells are still very low.
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@threetree , sending good vibes as you start the Xeloda!
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@soldanella - Haut-Valais is one of my and my DH favorite places! We regularly rent there to enjoy the mountains and to hike / snow shoe in winter. I was seriously considering moving to Valais in retirement, but Stage IV diagnosis changed that, with proximity to the hospitals being a key factor.
@denny123 - good news on platelets, fingers crossed for further improvement (red cells) and , of course, continuing success with your treatment. And thank you so much for the salad recipe - it sounds delicious and reminded me of my grandma recipe. I will certainly make it in coming days. I love the idea of using applesauce.
@threetree - good luck with Xeloda!
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@lacombattante LOL- the recipe for the sauerkraut is actually called "Grandma's Sauerkraut Recipe"! I used my food processor the last time, but didn't like how fine everything was chopped up. So I will go back to the chopping by hand method.
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@denny123 - 😂
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Has anyone here taking Xeloda experienced muscle and joint pain, mild muscle cramps, and some generalized fluid retention? It's only been two days and so far I've had no nausea or diarrhea, but I am starting to get some muscle pain/tightness and mild fluid retention. I can get electrolyte problems real easily, so it could be that, but from what I I've read, it looks like it could be Xeloda too. Since it's only been two days I'm going to give it some time, thinking it's too soon to arrive at any conclusion, and figuring some issues might just settle down with time.
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@threetree I haven't had those problems, and I hope that they clear up for you!
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Thank you, Denny!
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@threetree : I haven’t had muscle and joints pains, but I experience mild water retention now and then. I brought it to my MO attention but she was not particularly concerned. My way to bring it under control was to start a day with few exercises that improve blood circulation in my legs (ankle pumps, leg raises, a few stretches) to get blood and lymph moving. It got better in a space of a month or so.
I keep my fingers crossed that in your case it is also transient, due to body adjustment to the new medication.1 -
@lacombattante - Thank you very much. Your comments are very helpful. I'd never thought about the exercise angle, and it makes sense. I'm hoping this is just some temporary transitional stuff, as the previous drugs leave my body, as I get going with this one. These symptoms are real similar to when my potassium levels are low, so I'm going to try to get some higher potassium foods in the mix this week. I think I'll be fine if nothing gets worse, but my fear is there will be some unexpected quirk that will make me have to stop the drug. There's not much left out there if this doesn't work. So far I feel a bit better today than I did yesterday and I like to think that's a good sign. I appreciate your crossed fingers!
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@threetree , I get the muscle cramps sometimes. I try to eat a banana every day. And drink lots of fluids. If you ever go to Canada there’s a drug that’s OTC called Robax. It’s just Ibuprofen and a muscle relaxer. If the cramping gets bad I take one of those. They’re in all the drugstores in Vancouver on the shelf.
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@aj - Good evening and thanks so much. Interesting to know that you get these relatively mild cramps too. I also have a banana every day, and I drink a bottle of coconut water too. It has more potassium than the banana. When I was getting chemo, and then for some I afterward I would have these"spells" where I would get lots of cramps and start to feel really weak and like something was terribly wrong, so I'd go to the ER. It always turned out to be low potassium and sodium, and they'd give me an IV. I started doing the banana and coconut water and the spells stopped and I didn't have to go to the ER anymore, thank goodness. I do still occasionally get low sodium, but these cramps feel a lot like those old ones I used to get from mostly low potassium.
Thanks too for the tip about Robax. I'd never heard of it. It kind of makes me want to take the boat to Victoria or something. It's been a long, long time. I remember way back in the day my school chums would often come back from Canada with B52's. They were aspirin with codeine if I remember correctly. I don't know if they even still make those anymore. Haven't heard of them in ages.
Well, hope you're doing well and enjoying this wonderful sunshine we're having.
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