All about Xeloda
Comments
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I started at 2,000 at 14/7. But as soon as my hands and feet got red and sore, I was changed to 7/7.
I didn't know then that the toenail infections were caused by my eating foods high in folic acid. So 2 years later, my feet were horrible and my onc took me off Xeloda for 3 months. But I had already figured out the folic acid problem. So I was only off Xeloda for 7 weeks.
But then my CT scan showed a spot on my liver, so I asked to go up to 2,500. That spot is now gone.
My oncologist won't prescribe 3,000 a day for anyone, no matter what their weight is. And 3,500 is ridiculous!
I am about 20 pounds overweight.
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just started xeloda and am on week 2. Having extreme anxiety and am wondering if anyone else experienced this? I am wondering if it’s just anxiety from failing Fulvestrant after 6 years NED on Ibrance and letrozole. I was so lucky and didn’t even realize it. Am afraid of failing xeloda too . Afraid of death in general. Am practicing mindfulness and get therapy an am on meds. Just wondering about extreme depression and anxiety when starting this med. does it go away?
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zipmonk, I’ve been taking a mild antianxiety med and an antidepressant since the first year of diagnosis back in 2011. Xeloda hasn’t seemed to increase those issues. I think it’s normal to feel the way you are since the one treatment failed and you’re wondering how Xeloda will go. Hopefully your nervous system will relax as time goes on, but I’d still mention it to your doctor. I don’t know if they would want to adjust the meds or doses. I hope Xeloda treats you well; best wishes to you!
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Actually it give me a lot of anxiety the first two months...i don't know if it was xeloda or me filino ribociclib after only one year.
I read that usually long response to one medicine mean overall long response, so even if you now have to change, one, two or three times, who know, you have more chance to eventually find another cure that will have a long response.
I wish you good luck and to find peace! I found a little peace when my blood test got better and markers went down again.
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Thanks for your replies - I am seeing a psychiatrist soon and holding off on the capecitibine until I am more steady emotionally. Also upping my meditation practice to get ahold of “monkey mind” bombarding me with scary miserable death stories. Realizing my fear of death is not as bad as my fear of a miserable death. And I have the power to make it not miserable. Thanks again fellow travelers!
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Amel- 83 -
is this true even if I have a pleural effusion? They are hoping it can be eliminated along with small nodules by capecitibine
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Zipmonk, I wanted to let you know I’m no longer on Xeloda, but in the first few months on it, my emotions went crazy. I would cry at the drop of a hat and knew it was from the med and my mood was so up and down. After a few months, I leveled back off. It was the weirdest thing.
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Zipmonk,
Have you had your Vit B12 level checked? Vit B12 deficiency can cause psychological problems, which can range from mild depression or anxiety, to confusion and dementia. I started having crying jags and feeling unusually depressed while on Verzenio. My Primary checked my Vit 12 level and it was below normal - a problem I'd never had before. After I started a sublingual B12 supplement my level returned to normal, my emotional health improved and the crying jags ended. I no longer need a B12 supplement, so I'd conclude the deficiency was due to the medication even though it's not listed as a side effect. Verzenio and Ribociclib are both aromatase inhibiters.
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I wanted to chip in also with the mood shifts - I had something similar but I didn't last long on Xeloda at all.
Would also second the B12 check, this time of year mine really takes a nose dive and they keep an eye on it. Get that topped up if you are low and you will feel a lot better. Same with Vit D.
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Thanks all!! Will definitely get my B12 checked. So one round of xeloda and pleural effusion has already decreased significantly! I have hope. They are even talking about removing the catheter. I am fighting to stay on this and got a script for Clonazepm for the anxiety . Will also take one half of the dose before bedtime to sleep though the side effects .
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Hi all
Started Xleoda in January after finishing 7 yrs AI therapy for lung mets
Slow progression over 7 years no lung issues for 4 years..just hand n foot issues n tiredness from taking the meds. Two stable scans this year.. last in september so 8mths good
Dec scan showed progression
Nxt options were Enhurtu but not ( live in Australia) covered for me.I would have to pay $5000 per week ..up to $50k then parma would pay.
Oncologist said i am probably classed as Her2 low ....not been retested since 2010
Another option was Vinorelbine tablet f starting 110 mgs then increase dose if no adverse effects... this on the Pbs scheme and costs $30 instead of apro$3000 per month
Started yesterday.no side effects yet ant nausea drugs a working
Always Bright in hope
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Hi all - hey Sondra fancy seeing you here! I’m starting Xeloda on January 25th and wondering how long you lasted and what happened that you discontinued? I’m waiting for my lungs to clear up from being on Everolimus - was on that only a month. Hoping for better with Xeloda.
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@sharware I have been on Xeloda for 6 years, and most women (like me) have found that we have to limit the foods that are high in folic acid. You can eat them in moderation. Otherwise, I had severe hand and foot problems…burning, infections, deep cracks. My folic blood levels are still normal so I am still getting enough folic. I was eating too much spinach and broccoli, etc.
Good luck!
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@denny123 , wow 6 years on Xeloda is very encouraging, I’m on Kisqali right now but needs to switch med. Xeloda or Afinitor is my next option. Reading about Afinitor se scares me, Xeloda seems more tolerable. What is your experience with Xeloda and what dosage are in?
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@anx789 I am on 2500 a day at 7 days on and 7 days off. My first 2 years were bad with severe fingernail and toenail infections. When it got at its worst, I finally figured out why….I had been eating too many high-folic foods. I remembered reading now and then to avoid those foods. Once I ate those in moderation, it was a major improvement and my hands and feet are now only dry.
I had orange juice for breakfast, big spinach & avocado salads for lunch and often had broccoli for dinner. My folic levels must have been off the charts! Now I have those foods only in moderation and my folic blood levels are normal. Google to find the 15 foods that are highest in folic acid. I also stopped taking multi vitamins since they have folic in them.
I use Aquaphor at night on hands and feet with silicone socks and food service gloves. Aquaphor with socks during the day, and Gold Bond or Pro Foot diabetics cream on my hands.
A lot of ladies have diarrhea, but I am constipated, so I take Miralax and stool softeners every evening.
Take the pills a half hour after a meal.
I don't have nausea or any other problems. So now that I know what to eat, I really don't have any problems. And the fact that it is keeping me at NED for so long, is pretty good!
Good luck!
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Thank you @denny123, I stopped Kisqali today and will start Xeloda on Monday. I will take 1500 mg twice daily, 7 days on and 7 days off. During the 7 days on, which day(s) are the hardest?
I’m really hesitant to switch but my tumor has been going up since June last year. Any advice on what kind of food to eat?
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Hi, I was also on ribociclib (+letrozole), than i had a progression in August and started with xeloda in late september. Here in Italy the go heavy with it, i'm 14 days on and 7 off...3500 a day, and I only weight about 44 kg...I talk about with my oncologist, been on a way too big dosage, but they still think is ok if i handle it, and say i can, the least, go to 3000, not less...
I did follow the suggestion of @denny123 and eat less folate, because this high dosage was destroying my hands! Nobody here told me about, so i was eating a ton of broccoli and spinach!
But now, reducing them, I actually can handle it ok!
Other than that, I eat everything, just low sugar (but that just me, not because of xeloda), whole food, veggies, seeds, nuts, fruit low in sugar...no juices....but as i say, just my personal diet. Regarding xeloda diet just reduce folate if you have SE. And wash veggies realky well, as xeloda itself can give some gastrointestinal problems, you don't want to meke it worst!
I have a little nausea the first days of every cycle, and couple days of diarrhea during the week off, and some crack on my fingers. But overall i keep my regular life, and blood exams are good too again, so it's probably workig.
My first and second cycle i had a lot of depression, but may be due to the stress of progression and changing meds...not sure, as i usually never had it...and more nausea that i have now.
Also every cycle change, sometimes have more SE, sometimes less...
Best wishes with it, let us know how it goes!
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@anx789 ..that is an okay dose, but my onc won't go up to 3,000 a day unless it is absolutely necessary. I did start out at 2,000, but at one point I had a spot in my liver. So I asked to go up to 2,500 a day. The spot disappeared, but we don't know what it was since I didn't have a biopsy. Actually, your week off might be a little harder since the dose has accumulated its max. But I really don't see any change in the way I feel, since I can tolerate it okay.
I eat everything in moderation. Google to find the 15 foods highest in folate and try to avoid them. I can eat spinach and broccoli now and then, in moderation. For my salads, I eat iceberg or red lettuce. I always google foods to see how high they are in folic. Avoid oranges, especially the blood oranges. For fruit, I avoid bananas, grapes and cataloupes.
@amel_83 ..I am glad that you are doing better with the reduced folic! I have been constipated for many years, which started when I was on Kadcyla. I was hoping to have things even out on Xeloda, but I am still constipated. Oh well. I am used to it.
I don't have depression since I have been on this Stage 4 rodeo for 22 years. And I do realize that I am very blessed to still be here.
I think that you should ask for a lower dose. I am 20 pounds overweight, but my onc doesn't go by weight.
Good luck to both of you!
Denise
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I will ask to my next oncologist, and try again for a lower dose. I always change oncologist because they had some problems of doctors leaving the hospital..so I will see somebody else next time and ask again, i think is too much too. Also i want to do 1week on and one off, like in usa...but i don't think they will let me.
And yes you are so blessed!! And I believe strong too.
Thank you for the answer
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Thank you denny & amel. How is your QOL before Xeloda? Were you in pain? My QOL right now is good, no pain, but I lost my voice since November last year and a little change in my breathing.!I’m really scared that when I switch med my QOL will deteriorate fast. My Pet scan last October 2023 shows new lesions on bones, my lung nodules were stable, liver and all other parts were clear. So we decide to wait and see but with my TMs keep going up, plus my voice gone, and breathing not as good as last month, my MO is convinced it’s time to switch. How high are your TMs?
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@amel_83 When I first started on 2,000 at 1/7, my onc looked at my very red feet and hands, and did put me on 7/7. But since I didn't know about lowering folic acid, they got much, much worse.
I would tell your new onc that your feet are very sore (which they probably are). In my early days, I couldn't stand to walk, even on my carpet.
Since 2,500 at 7/7 can keep me NED, the stuff is pretty good. I am also metaplastic BC, which is rare and very aggressive. You could always go back up to 3,500 if necessary, but very few ladies are on that much.
I had to look up your weight, since we use pounds. If you are only 97 pounds, there's no way that you should be on that much. I weigh a lot more than you do!!
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@anx789 ..My QOL has always been good, with no pain. When my liver was filled with mets, and when I had 2 chest node mets, there was no pain.
I do have back aches and blame it on my Faslodex shots 7 years ago. But no one knows for sure what causes the aches. It's weird about your voice since I recently told my onc that I can't sing anymore. I used to be able to sing along pretty well with songs on the radio, but I can't now. Maybe it's because I am old, though.
I don't think that your QOL will get worse on Xeloda. My CA 27-29 has never been accurate, so it is ignored. My CEA 15-3 is normal. I don't think that it was tested 7 years ago when I had the chest node mets.
How high have your markers gone?
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@denny123 I have a squeaky voice since last November. My MO said he hasn’t seen voice issue with Kisqali although he seen a lot of lung issue with Kisqali, so if my voice problem is from my lungs, there’s a chance it s SE of Kisqali 🤞 My ENT did not see suspicious in my larynx and send me to speech therapist 😕
My TM are: CEA is 42 : CA 27.29 is 166.6; and my CA 15-3 is 106. When I was diagnosed for MBC in 2022 all were in the high normal. After MBC diagnosis my old MO stop checking it but I changed Onco and this new MO started monitoring it again in June 2023.
What kind of imaging do you and how frequent?
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