All about Xeloda

Denny- 8 years?! Srsly?! And AJ- 1.5 years? It sounds like this line is well worth figuring out how to deal with the side effects…

@cure-ious Thank you for your gardening tips. I avoid coffee grounds, but I congratulate you on your efforts and hope the lavender will be beautiful this year. My vegetable garden is very sloped, and I put up small fences to retain the soil. Every year I add manure and compost, and in the spring, potting soil to try to maintain a reasonable soil level for my seedlings. I loved your post and wish you a wonderful 2026.🌱

@bigred62 Well done on your two weeks and the physical activity you manage to do. It feels so good to know that our markers are going down, doesn't it! I send you all my best wishes for happiness in this new year.

@soldanella Thank you for your kind words, it's appreciate and I wish you a happy and healthy 2026 too 😊

@denny123 Thanks for mentioning the 10 to 12 hours as I was waiting 12 hours and having to take my pills at 8 when I eat dinner at 6:30 and end up saving some dinner to eat with pills, I'm trying not to have to eat 4 or more meals a day 😅

This is great information for eating out too and not having to worry about packing a snack and water 😋

Jill

@bigred62 …the pills are supposed to work better with partially digested food, too. It has been working well for me!

The instructions say to wait a half hour after eating a meal since the food will still be in your stomach. Since whole grain breads have high folic, I either eat less of those or white bread.

The problem is that the low-folic diet is not as healthy. But neither are the bleeding cracks.

@bigred62 ..I don't count what I eat. I always eat an egg omelet for breakfast and I eat maybe 3 bananas a week. As long as I avoid fresh spinach, broccoli, oranges, dark leafy greens, avocados, and dried beans, I really don't have problems anymore. I used to eat them every day, and suffered so much!

When I go to my daughter's house for dinner, I do eat her great casseroles and veggie-pasta salads. And my feet and hands will burn when I wake up the next day. But I go back to my regular diet and have been fine.

And I should mention that my folic levels are always normal now. They must have been off the charts before when I ate my huge spinach and avocado salads!

@bigred….I don't think that my folate levels were tested before, but now that I know it is a problem, they do it for me. It's too bad that most oncologists don't know about the problem, but my specialty pharmacists do. They are the ones who sends the Xeloda to me.

@aj - Thanks for the good wishes that I have an OK time with Xeloda. They tell me they are waiting for insurance approval, etc. for now, and will let me know later when I can start. I'm also supposed to have a session with one of the pharmacists to learn all about "Xeloda things", once the drug comes in. I'm so glad to hear that you've done as well and as long as you have with this drug. It gives me hope.

I'm sorry to hear that you need Pepcid sometimes, and I'd had a feeling I'd run into the hand/foot problem very likely. Sometimes I think 90% of what I eat would be on the "high folate foods" list, so I'm going to have to make some adjustments for sure. Whether it's really a "thing" or not (per above discussions) I just don't know. I brought it up with my oncologist and told him how so many here say they do so much better when they lower the folate in their diets, but that also someone on here also said that their oncologist said there was no truth to the "rumor" about folate. My onc said that the problem is that there is no hard core scientific evidence that it's truly "a thing", but he didn't want to dismiss what so many swear is true either. I'll just have to wait and see how things go for me.

Again, I am sorry to hear that you get some reflux and have to take Pepcid. I have stomach problems occasionally and the doctors all jump right away to reflux and want me to take Pepcid, and I've avoided that so far. I have some muscle problems and maybe mild reflux from time to time, but never anything that would require regular Pepcid use, and I get kind of upset with them all just rushing to the reflux idea, before really considering other problems. I've had some repetitive motion soreness right below my breast bone, a fracture and lesions on my breastbone that seem to occasionally radiate pain to my upper abdomen, and even some soreness from stretches and exercises given by PT. If I ever complain about any of that, I'm told to take Pepcid. Well, I actually did last November, because I had more stomach pains - turned out it was from muscle and nerve problems from low magnesium, and the Pepcid I did take never helped the pain I was having, so I think I did make some sort of impression on my oncologist at least. An urgent care doctor at about the same time though, told me I needed prescription strength Pepcid and a referral to a gastroenterologist for an upper GI scoping. I declined both of her "offers" and have been fine ever since getting the low magnesium straightened out. The Xeloda issue could be different though, and I might really need some sort of antacid, unfortunately. Hopefully not.

You are such a big help with all of this, and like me, you also took Verzenio first, so have a good amount of experience with the stuff I'm dealing with. I'm just keeping my fingers crossed that Xeloda serves me well and I have a fairly easy and very long run with it!✌️🍀

@aj - I agree that scientific studies would be nice. I'll just have to see how it goes of course. I am very encouraged by your comment that you have found Xeloda easier to manage than Verzenio. I'm just very concerned about whether it will work or not for me, and for how long? I read online yesterday that the median time to progression on Xeloda was something like 3.5 months! That's not good. It looks like you might no sooner become stable, then start to progress again, in many cases. Obviously that isn't what happened to you and @cookie54 . I'm thinking of all sorts of questions that I could bombard you @aj and @cookie54 with, but I will hold off and try to take things one day at a time. I can't thank you enough for sharing what you know and have experienced. It is a tremendous help!

and then is this….

Higher levels of folate or taking folic acid supplements are associated with an increased risk and severity of hand-foot syndrome (HFS) and other toxicities when on capecitabine treatment. 

Connection to Hand-Foot Syndrome

Capecitabine works by interfering with nucleic acid synthesis, a process that relies on folate as an essential cofactor. Higher concentrations of folate (both natural folate and the synthetic folic acid) can enhance the activity and toxicity of capecitabine in healthy tissues, leading to a higher risk of side effects, including: 

• Hand-foot syndrome (HFS): Symptoms in the hands and feet can include numbness, tingling, burning pain, swelling, redness, and eventually skin cracking, blistering, or ulceration.
• Other toxicities: Increased risk of severe diarrhea, nausea, vomiting, and nerve damage (neuropathy) has also been noted. 

Important Considerations

• Avoid excessive intake: Patients are generally advised to avoid taking folic acid supplements or multivitamins containing folic acid without consulting their oncologist.
• Medical supervision is crucial: If a patient is taking folic acid, a doctor may need to adjust the capecitabine dosage or perform more frequent monitoring to safely manage both medications.

@threetree …thanks! I am only trying to help others which has been my mission this whole time. I have been a Stage 4 BC mentor for the ACS program of Reach to Recovery for 24 years.

I would never attempt to push anything that is unsafe.

@cookie54 - Thanks for your comment about how you've been doing with the HFS issue and Xeloda. I really appreciate hearing how others have done/are doing.

Just how much nausea, diarrhea, and fatigue have all of you on Xeloda experienced? If you had it, how bad was it? How long did it last? Etc.

They tell me my Xeloda was approved and is ready for delivery. I'm not supposed to start it though, until I have a session with the clinic pharmacist, and that hasn't been scheduled yet. That could still be a few days away though, as I am scheduled for a biopsy on my upper chest this morning, due to a bump or two that have appeared close to the old original tumor area where I got a lot of radiation also.

I am getting nervous about what to expect with the Xeloda though. Since I've been off the Verzenio for a few days now, I have some renewed energy and motivation that I'd forgotten I ever had, and I understand that that will likely disappear again with the Xeloda, so I'm just trying to psychologically prepare myself. Thanks to all.

@denny123 - Thanks very much for relaying your experiences with the digestive issues and fatigue. It's very helpful. Very interesting that the nausea could actually be worse during a week off. I'm feeling so much more energy these last couple of days, after not taking Verzenio for a few days, that I'm dreading any new thing that will bring back the fatigue and "blah" feeling that Verzenio gave me. Oh well.

@denny123 - Thanks again, good to no you don't actually barf. I know hominy and my mother used to make it while I was growing up, but I haven't had any in years. This was a nice "refresher" about how good hominy can be, and now I think I might want to get some for old time's sake if nothing else. Definitely good to know though, that it is low in folic acid.

@bigred62 I don't know about sour dough, especially since I think that it tastes "sour" lol. I can't see the fascination with it. And I like mostly all foods! You'd better check on that.

3,600 is a very large dose. I started out on only 2,000, but am now at 2,500 after I ate too much folic food, had to take a 7 week break and got a liver met. 2,500 took care of that, though.

I would gladly take some of your diarrhea, please. lol.

I'm glad that you are doing so well and I sure wish that I had the strength to do pickleball. But I am old and slow.