All about Xeloda
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Lately I’ve been going through bandaids like crazy from the cracks on my hands and feet. Washing my hands is a hassle. I tried waterproof bandaids but they don’t stay on very long. I’m doing all the things voltaren aquafor and urea cream.
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@denny123 yes I know all about the folic acid theory. However, I my oncologist, pharmacist and nutritionist and of them said that the folic acid thing is not a thing. I asked ChatGPT about it and it said no it is not a thing. I think it’s an urban legend that has been going around. I did quit taking my multivitamins because it did have a lot of folic acid in it. Otherwise, I eat what I want.
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This is the answer I got when I asked Chat GPT:
Short answer: No — foods containing folate or folic acid do not worsen hand-foot syndrome from Xeloda (capecitabine).
Here’s what’s known:Folate/Folic Acid in Food Is Safe
Normal dietary folate (leafy greens, beans, citrus, fortified foods) does not increase capecitabine toxicity.
Unlike methotrexate, capecitabine’s metabolism and side-effects are not affected by folate intake.
The confusion comes from high-dose folic acid in supplements
Large folic acid supplements (the kind used for other chemotherapy regimens) can theoretically intensify side effects when given with certain chemo drugs.
- But this does NOT apply to Xeloda.
- Oncologists do not restrict dietary folate for patients on capecitabine.
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Wow. My proof is that for 6 years I haven't had the burning and infections anymore. If I do eat too much spinach and broccoli, I can really tell the difference.
Enjoy your bandaids and pain!
FYI-Voltaren can damage the liver. When I had to use it for a torn meniscus, my doctor warned me not to use it for longer than 2 weeks.
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I’m glad it works for you. Everything is individual. A lot of people say that about folic acid. Good to know about voltaren.
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Thank you denny123, I finished first round of X and so far doing well. Had a bit of nausia towards the end of cycle but gravol ginger helped with that and major sore glands in troath every few days but cough lozenges helped. Had tightness in chest and back 3 days in but once I figured I wasn't having a heart attach I was good, probably muscle tightness from pickleball 😜🙃
I have taken your advise and am watching my folate intake, looking out for enriched or fortified labels.. sure is in a lot of food!
Day 1 of week off so will be nice not being on a schedule.
Thank you for your advice and wealth of knowledge 😍
Bigred62
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Hi all!
Jumping in to share more encouraging news about Xeloda: I had my PET / CT this week and the report states: “continuous complete métabolique response” .
Xeloda is my 2nd line of treatment, following progression on CDK 4/6 & Fulvestrant at the beginning of the year. I started Xeloda in February, it took a bot of time to work but my June PET was “very promising” in my MO words. September PET showed complete metabolic response which - apparently - still continues.
Hand/foot syndrome is, I guess, inevitable, especially this time of the year. I manage mine with Eucerin and CeraVE creams and PODERM serums. The latter is a Swiss brand, not sure if they are available internationally, but their serums literally put me back on my feet and into my hiking shoes 😀.
@soldanella - Soldanella, congratulations on your good results!
@denny123 - Denny, 8 years! WOW! You are my inspiration!
@bigred62 - bigred62, hope Xeloda works for you; side effects can be managed by dose adjustments and also protocol - I started 2 weeks on, one week off, but switched to 1 week on/ one week off as of July, to make hand/foot syndrome less bothersome and it worked.
A happy holiday season to all!
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@lacombattante I'm so happy for you and your great results with Xeloda. I started it two months before you, and my latest scan results are very good. I hope Xeloda will continue to be effective for a long time because I tolerate it well. It's wonderful that you've been able to resume hiking. I've done several hikes this year, averaging two hours each, without any problems or discomfort in my feet. I put my ski boots back on in December, which was a real pleasure. I wish you continued success with Xeloda.
@bigred62 Congratulations on your first cycle on X. It's always a challenge to start a new therapy. I agree with "lacombattante": switching to a cycle of 1 week of treatment and 1 week of rest really made a difference for hand/foot syndrome and fatigue. I also went from 3600mg/day to 3000mg/day. It may be worth discussing this with your oncologist if needed. I wish you a good journey under X.
I wish you very happy holidays..
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Wishing everyone a Blessed Holiday!
December 12 was the beginning of my 24th year since my MBC dx. I am still on Herceptin and Xeloda, but my platelets are down to 76, which is too low. If they don't rise, I will ask if I can go down to 2,000 ad day of Xeloda, rather than 2,500.
I am in PA and it is bitter cold, and the dry furnace heat causes my fingers to crack (even though I watch my diet carefully). I don't know why I never thought to use the finger latex things for protection. I use Bacitracin to heal the bleeding cracks, but keep hitting my finger or thumb and the cracks open again. So now with the finger protectors, they stay healed.
I'm glad that everyone is doing well on Xeloda, as I venture onto my 9th year on the pills.
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I wish you all a very happy holiday season.
@denny123 Congratulations on all these years of treatment that you've been following with such courage.
You're a great source of inspiration for my own journey, and your advice on Xeloda is very helpful.I'm in the city spending the holidays with my parents. It's gray here; I don't think we've seen a ray of sunshine in the lowlands for three weeks. I miss the mountains and I'm looking forward to seeing them again in January.
The cold weather is also making the chapped tips of my fingers and heels worse. So I'm being very careful to moisturize well, and my husband is doing the dishes🤣. Finger protectors are a good idea.
All my best wishes for health and happiness in the new year
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Someone on the Xeloda facebook page recommended this cream. I’m trying it and it seems to really work! The cracks in my fingers have all healed! I hope it’s real!
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@soldanella Thanks! Where do you live again? Since you have French in your treatments, I am confused. (but that happens often-lol). I am in Pennsylvania, USA and it is winter which I hate. I had to go for my Herceptin IV today and we had ice storm warnings. But I made it okay, TG.
Another thing about Folic acid….I had received fresh spinach in a meal kit from the Unite for Her site. I knew that it would kill my feet, so I googled to find out that if I boiled it, it would lose a lot of the folic acid. Actually, I should have figured this out a long time ago. I know that fresh or steamed veggies are better for us. But they also would have more folic acid. Live and learn….
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@denny123 : I live in Switzerland near Geneva. From time to time we rent a small apartment in the mountains, that's where I have a small vegetable garden.
Yesterday my father (85 years old) fell, he is in the hospital for observation. Plus I have noisy neighbors at the moment, it's not easy to rest.
It's amazing how these stresses steal energy when you're dealing with illness yourself. I try to stay calm and positive, it will get better soon.
I am happy to hear that you were able to do your infusion and travel without damage.
@aj : Thank you for the information about the cream. I will try to order it. Kind regards
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@soldanella thank you for the well wishes, I just started cycle 2 this past Tuesday and so far so good! I will talk to my onc if or when I start having adverse effects. My first cycle of 3600mg on X showed my Neutrophils were up to 2.4 from 0.7 on Ibrance and my Tumor markers dropped 30 points so I am very excited with the results so far.
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@lacombattante Thank you for the information about switching to a one week on and one week off cycle. I will definitely keep an eye on symptoms, so far I am handling it well and just started cycle 2 fingers crossed.
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Happy Holidays and a very Happy and Healthy 2026 to All!
The hardest thing is switching out foods with less folate, I just found a bread that has 10ug of folate per slice from Silver Hills "Little Big Bread" and also their "'Queens Khorasan bread" has 7.5ug per slice so I am going to switch to this and see how it goes.
Any suggestions or swaps that you have all found we be greatly appreciate.
I found this awesome website for Folate foods for anyone interested:
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Since I was challenged in a previous post about my insistance that folic acid causes the HFS problems, here is what I found in a simple Google search.
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 SyndromeCapecitabine 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.
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@bigred62 .. this is my own little list of what I can and do eat….I eat iceburg and red lettuce, tomatoes, cucumbers, peppers, olives, green and yellow beans, squash, cauliflower, carrots, potatoes, sweet potatoes, onions, peaches, plums, watermelon, apples, chicken, pork, beef, fish, pasta, rice, whole grains, popcorn, chips, pretzels, tortilla chips and salsa.
And white bread also has less folic acid than the healthier whole wheat bread, sadly. And 3,600 a day is very high! If you have to decrease that a bit, it should still work very well for you.
@soldanella ..I am sorry to hear about your father and pray that he recovers quickly! Ahhh, to live in Switzerland! Lucky you! We are having so much snow and ice here in PA. I sure can't wait until spring!
Happy New Year to all!
Denise
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@bigred62 ..okay, I am jealous since I am always constipated. Your list is interesting, but when I first read about the folic acid, I searched to find a list of the 15 foods that are the highest in folic acid.
From then on, when I wanted to add to my menu, I would just search for each individual food for the folic content. Since I always take the pills after a meal, I never have nausea. Some ladies take the pills on an empty stomach, which I would never do.
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I was on Kadcyla for 2 years and that started the constipation, and now 8 years of Xeloda….But Miralax and 3 stool softeners every evening keeps me "going".
When I was told that Xeloda causes diarrhea, I was hoping that things would even up, but……..
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@denny123 , thanks for the information that you found on folate. I never know what to think about it all. Looking at your list of foods, I think I’m in the range, especially since I stopped the multivitamin. I didn’t mean to be argumentative. I just get conflicting information about it.
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@aj ..Like I have mentioned, 8 years ago, I kept reading about the folic acid problem, but since my onc never mentioned it, I didn't believe it. So I suffered for 2 years of burning and infected hands and feet. Finally, after eating large spinach salads everyday for a week, my big toe was very infected with a blister that covered the whole top of my toe.
My onc was horrified and took me off Xeloda. But I had already figured out the problem, and changed my diet. It took 7 weeks for my infected toe to heal, and it has been fine ever since. BTW, my folic levels are normal now. so they must have been off the charts before!
All you have to do is cut back a little and you will see an improvement.
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I’ll try to be more aware. I don’t eat much spinach salad, in fact, I kind of have to convince myself to eat vegetables and I used to love them. I crave carbs, cheese and chocolate! But I still eat the veggies and fruits.
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I had been cruising this thread occasionally, because I'd always thought that Xeloda was a possible thing in my future and now it looks like it is becoming reality. My scans on the 18th showed progression in bones and liver, so at my follow-up with the onc on Dec 31, he said he thought Xeloda would be next and that sometime within the next two weeks we would get going on it. I was hoping to finish out this week-end at least before I had to get going on anything cancer related again, but …, just this morning I got a text from the pharmacy saying they'd gotten a new prescription order but didn't say for which drug; only that they would let me know when it was ready. I hadn't expected it this soon. Is this something you usually get at the regular pharmacy? I got my Verzenio through a specialty pharmacy by mail.
Verzenio and fulvestrant appear to have failed and the onc had considered Truqap and then Xeloda, depending on how the Truqap might have gone, but he has since decided that since I tend to get a lot of side effects, Truqap is not for me. It can make you diabetic, cause lots of diarrheae, etc. He is going with Xeloda at 1500 mg BID, 7 days on and 7 days off for a 28 day cycle. He says this is a low dose that should be relatively tolerable for someone like me who gets a ton of side effects. I asked him then just how effective it would be, if it was a low dose and he said "very effective". Well, fingers crossed, looks like I'm joining this thread now. Let's hope it's for a long, long time and not just a couple of months or something 🤞🍀.
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Hi @threetree Im on the same dosage of Xeloda. I’ve been on it for over a year and a half. And it’s totally working on my cancer! I’m very grateful for it! It’s just the hand foot syndrome that gets me. I hope you do well with it!
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@aj - Thanks so much for the info about your same dose and how well you are doing on it. I knew you had switched from the Verzenio, but couldn't remember for how long and at what dose. This is encouraging indeed! They have just sent 3 prescriptions into the pharmacy for a bunch of anti nausea and anti diarrhea meds for me to have when I start the Xeloda and it's got me real scared and worried, so your comment has been a big help!
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Soldanella, I have a possible hack for your pricey garden dirt issue. There is a long strip of our backyard that faces a fence and a downhill slope, and I am constantly battling soil erosion there, which I have to top off with new dirt every year, just to keep my patch of lavenders thriving. So last year I made several trips to Starbucks to pick up bags and bags of their free percolated coffee grounds, and used them to fill in all over the back area. I then topped the area with regular garden soil and mixed it together, then topped with some mulch. I think this will work nicely, but have yet to see it through a full year to know that the plants are good with it.
One thing for sure, do NOT use it for potted plants in your courtyard, because every time you water, coffee dribbles out all over the place!
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