All about Xeloda
Comments
-
I have been on Capecitabine for over 5 1/2 years. I absolutely agree to limit foods high in folic acid since they were the reason why I had constant toenail infections and bad burning in hands and feet. Some women aren't bothered by folic acid, but most of us are. My folic acid blood levels are still normal so I am getting enough of it.
Now that I am watching my diet it is a major difference. I used Aquaphor on hands and feet at night with silicone socks and foot service gloves. Aquaphor and cotton socks during the day and heel rescue foot cream on my hands.
I don't take walks since they would make my feet worse, so be careful with walking.
Urea makes my hands and feet much worse since it is an exfoliant.
Good luck!
Denise
0 -
Amel- I got 2and 1/2 years- I had one dose reduction due to HFS and then changed to 7/7 when ANCs didn't recover and then smooth sailing. I did have radiation twice due to isolated hip bone cancer cells and then another for some isolated cells- allowed me to stay on it another year.
I led a pretty normal life on it- hope it works great for you!
0 -
husband11,
After failing on 9 months of capecitabine (Xeloda) I was offered Elacestrant (Orserdu), because I have the ESR1 mutation or Enhertu, because I'm Her2 low.
0 -
I feel like I read somewhere (way back on this thread, in other information online) that a lack of HFS was related to a not strong response to this drug and early progression? I dont bother lotioning much anymore as I havent had any issues with the HFS (just the one toenail, but some OTC cream sorted that out). Fatigue is getting to be a problem but I dont know whats causing it - the terrible walking posture, the drugs, the painkillers, or what. I wake up in the morning and hurt and ache all over.
0 -
So I just started Xeloda, the oncologist told me to avoid sun almost complitely, but for bone metastasis I'm supposed to take a little bit of sun. Is sun exposure been a huge problem for somebody? I definitely will not expose myself in between 11 and 16, but after they told me to avoid sun I'm afraid even of the mild sun...is that a problem?
Also they told me to always take capecitabine on full stomac, what if I eat a small breakfast? Or if I skip breakfast? Can I eat Xeloda anyways?
Thank you everybody, you are beeng my bigger support at the moment!
0 -
One more thing! So I read here, and in some studies that HFS mean capecitabine is working, so if I don't get HFS, or eventually I will stop having HFS, does that mean xeloda stopped working or doesn't work? Anybody lasted long time on it without HFS?
Now I just want HFS really bad...
0 -
amel,
I'd recommend you ask your pharmacist your questions.
My opinion/experience: Not sure about SEs from sun exposure. Limiting length of time and time of day seem a good guideline to follow. Typically I go outside any time of day, but always cover up with a brimmed hat and sun protective shirt. I had no problems while on Xeloda.
Regarding taking with a meal: That's the instruction that clearly comes with the medication. I consulted more than one oncology pharmacist who said the same thing. I would not skip or skimp on this. Taking with food will affect the absorption rate and also acts as a buffer to protect the stomach lining. The ideal for 2 doses/day is 12 hours apart. I took mine at the end of breakfast and end of supper which were 11 hours apart. My oncology pharmacist said that was fine.
1 -
I also keep the eating rule although not easy; try to arrange it how it would best suit your days, I usually take my pills at 11 am and pm, so I start eating a small meal around 10:30-10:40. Kind of a late breakfast and a small post dinner portion.
1 -
I went and parked myself in the sun this summer a few times and didn't have too many problems, but that was for 15 minutes and I needed it, the long winters here the sun doesnt get high enough for vit d production and its A Problem. I did put on a hat and had longer pants on. If I was going out to the beach I would have on a rash vest or something similar.
The food is critical with this drug, not a 'nice to have'. I start a timer when I finish eating of 20 minutes so I dont forget. I tend to eat breakfast and dinner about 12 hours apart, but I have small meal ideas like a small yoghurt and a piece of toast or fruit and yoghurt and some nuts if I am outside the window or I dont feel like eating.
0 -
amel, I’ve been taking capcetabine for over three years. I go to the pool every summer generally at least twice a week, sometimes more staying up to four hours. I use spf50 or higher suntan lotion, wear polarized sunglasses and a bucket hat. I am in the water pretty much the whole time I’m there, I’m not one to lay out in the sun. I shower as soon as I get home then lotion up my feet and hands. The pool is a highlight of my summer. I don’t think I have any adverse affects from it.
Taking capcetabine at 8:30 am and 8 pm works well for me. I have an alarm set on my phone for both times of day and thank heavens for that or I’d never remember to take it! Find the times that work best for you. Sometimes all I eat is a banana or a small container of yogurt, other times more. I am not overly regimented to it, it’s just part of my daily routine. Good luck with this treatment!
2 -
I have been on Xeloda for 5 3/4 years. There are some ladies who can eat foods high in folic acid and still not get HFS. That doesn't fork for me, but I can eat a moderate amount of foods with folic acid.
Through the years, I have often read that if one doesn't have SE's, the chemo isn't working….and that has been for all chemos. I highly doubt that is true….just another old wive's tale.
I never heard about avoiding the sun and I go out every day to do gardening and yard work with no problems at all. And I don't wear sunscreen either.
But I haven't gone to the beach and seldom am out longer than an hour or two at a time.
And yes, the instructions with the pills say to take the pills within a half hour after eating since they work best with partially digested food. Never take them on an empty stomach.
I take the pills about 10-12 hours apart with no specific time assigned to them.
My latest CT scan showed an 18mm spot on my right lung, so now I have to get a PET test. Hopefully, it isn't another recurrence.
2 -
Thank you everybody for all the tips and stories, they are very useful to me. All the oncologists went away from my hospital and there is only one for all the patients (before there were 5 oncologists), so now I only have a visit, and if i forget some questions, i write a mail but nobody answer, or just take forever. This place is like my saving boat! Thank you, i will follow all the suggestions!
1 -
My wife has to avoid the sun with capecitabine. She gets a lot of really dark spots, and her skin, even with light exposure to the sun becomes very darkly tanned. If sun exposure is problematic for you and if the reason to recommend sun exposure is to provide vitamin d for your bones, can you ask the oncologist if its ok to supplement with vitamin D instead of sun exposure?
1 -
@husband11 I already take some, but I will probably need to take more if I'm not able to take the sun. I will definitely ask about that next time a see my oncologist, that's a good idea, thank you! And best wishes to you and you wife 💌
0 -
@amel_83 from what has been reported on this forum, women with low vitamin D levels and using supplementation to increase their levels must take amounts far beyond the RDA minimums. If you decide to supplement, be sure to get some good advice from an experienced practitioner about how much to take. It takes 1,000's if not 10's of thousands to raise you levels.
Thanks for your kind thoughts. It's a difficult time we are going through.
0 -
Four months and I'm coming off cape as its done pretty much nothing for me. New scan showed continued growth on hip and L4, despite tumor markers coming down two weeks before the scan. Moving on to affinitor/aromasin as I clearly need some sort of hormone component to treatment. Never once had a good scan on this drug, I may as well have not been on any treatment.
Perhaps I shouldn't be too surprised as I had no side effects on xeloda!
Just to edit, I have thr tp53 gene and there is at least one 2022 chinese study thats shows it to result in poor response to xeloda.
1 -
sondraf,
Was your oncologist aware of that Chinese Study re tp53 showing poor response to Xeloda? Did you ever bring it up with your oncologist? I ask because I was in a similar situation with a different drug. I had a mutation newly identified and then read the mutation showed resistant to Fulvestrant in lab studies. And yet my oncologist then ordered Fulvestrant for me, and I got absolutely no benefit. I feel like I should have raised questions, but did not.
1 -
wenn - I read the study while I was waiting for my injection after clinic :) I knew of the BRCA mutation but hadn't paid attention to the tp53 mutation at all on the May liquid biopsy for months until I happened to reread the output in September some time. It does look like more than a few studies have tried to figure out the impact of this mutation (a pretty common one - something like a third of breast cancers have it) on survival and drug response, but like the whole surgery with de novo situation, multiple studies say different things and all have data collection challenges. I guess the Chinese one just happened to be the top of my search :P
1 -
sondraf I'm sorry to hear Xeloda didn't help at all. I can imagine how disappointing it is. Fingers crossed that affinitor/aromasin gets the job done!
0 -
Hi everyone, I’m new here. Stage 4 with Mets to bone, lungs & now liver. I’ve been on Kisqali & Letrozole & then fulvestrant with initial good responses but my most recent scans had liver spots returning so I just started Xeloda.
I am on day 2 and actually feel awful! Nausea, flu like aches & dizziness. Did anyone else initially feel like this and does it wear off? I’ve barely left the bed since I started this yesterday morning and I really want it to work. I’m on 500 mg, 3 in the am, 3 in the pm. 14 days on, 7 off.
Thanks ❤️
0 -
@bonogirl13 —I have been on Xeloda for almost 6 years and you are on a pretty high dose. Do you take the pills a half hour after a meal? It works best with partially digested food. Never take the pills on an empty stomach.
I started at 2,000 at 14/7. But when my feet got red and sore, I was changed to 7/7. Now I am on 2,500 a day at 7/7. I don't have nausea. Be careful with foods high in folic acid since they can cause bad hand and foot infections.
2 -
Hi Denny
After how long did you develope hand foot syndrom, how many cycles? I read it's actually a good sign of capecitabine working.
And wow you are on your 6 years, congratulations!! That bring me hope!
Thank you for your tips and experience.
I wish you good luck!
0 -
@amel-83…..It isn't a good sign…that is a myth. The constant infections aren't good for the body at all since my body had to fight them. The HFS started immediately since I was eating big spinach and avocado salads for lunch, and broccoli for dinner. Plus OJ for breakfast. They are all high in folic acid.
I am an almost 22-year survivor of MBC, and have often heard that we need to have bad SE's for the chemo to work. Trust me, that is not true.
Thanks for the well wishes!
1 -
@denny123 Thanks for the tip on folic acid, I need to take a closer look at what I’m eating. I have been following the meds within 30 minutes of eating rule too.
Today is day 5 and I’ve been slowly getting better, less dizzy but I do have this constant nausea. I see my Dr again next week. I’m hoping this works wonders and maybe we can reduce to 7/7 or a lower dose.
1 -
I have never had nausea. My onc seldom prescribes 3,000 for anyone. So a lower dose and 7/7 might work. Supposedly it depends on your height and weight, but he doesn't go by that. I lost 30 pounds (on purpose) since I started Xeloda, and my dose hasn't been decreased. I do take Famotadine for my GERD, though.
1
