All about Xeloda
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gee i am on 4 pills, am pm so total of 8 per day and told that was max dose. But i should not complain as it has been workingnand and that is what is important
I had nueropathy in my feet way before all this
I had failure with two other meds so just dealing
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Gosh, you gals on those high doses, I don't know how you do it. I can't do any more than 5 a day, 500mg each. So 2 in the AM and 3 in the PM.
LFF, welcome back. Remind us if you went on something else when you quit X, and what is was and for how long. I hope you get another good run the Madame.
I did my labs yesterday, my CEA was up and the other 2 CA's, one was up and one was down. So not sure what the good doc will want me to do. I will call this morning and ask.
I need to go back a page and see the link that Wendy supplied for help with H/F. I have tried a ton of things, and nothing heals it, it just soothes it. I also use latex gloves to keep the lotions on longer and also silicone swimmer socks. Been using coconut oil with some tea tree oil in it to try and help my nails grow out. Both big toes are lifted and off 1/2 of the nail.
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From what I have read, different dosing regimens may help some patients (ie, 7 on 7 off vs 3 weeks on 1 week off). Its unclear whether higher doses benefit some patients. It's clear that higher doses are not tolerable in some patients. University of Southern California runs at least two hospitals and they routinely prescribe xeloda at a flat rate dosing of 1000mg twice a day. That is a very low dose compared to that routinely prescribed. Some of you are doing 5000 / day. They do this regardless of the patients height and weight, which is how standard dosing is calculated. They report that they get results as good as any higher dosing. Clearly then, there are some women for which a lower dosage is effective. The big question is whether any women benefit from higher dosages. Based on the USC reports, the answer would be no. USC believes the lower dose facilitates higher adherence to the three weeks on and that is the reason for its success.
I've also read that some Oncs believe that women who get high HFS (hand foot syndrome) tend to be higher responders to the drug. My thought is that perhaps that correlates to a more efficient metabolism of the drug to its effective end product. The drug is through several steps metabolized into 5-FU. In Europe, where the drug was initially tested, the dosing was even higher than we use in North America. It is speculated that the reason is different folate levels between Europeans and North Americans. In North America, food is fortified with folates. In Europe, it isn't. Folates play a role in metabolism of xeloda to 5-FU.
My wife, over time, lowered her dosage of xeloda and it continued to be effective. But, individuals clearly differ.
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Has anyone found something that helps with watery eyes
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Diana, I have not found anything to help with the eyes. Dark sunglasses when outside and just dab them with tissue when they do water. I was always swiping the outer bottom lashes, as to wipe with a finger. Well, I pretty much rubbed off all of my lower lashes. So I try to be very careful now with that. I also have a drippy nose!
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Mamita, my onc says that as far as they know there isn't a dose-response to Xeloda. I'm guessing that there is a dose below which it doesn't work. At the Dana Farber they usually start people at 3000 a day and lower it as needed. Or at least that was the story last year. They started me at 2500/day because I travel a lot. Works just fine.
If you move to 7/7 then over time you're taking a third less drug. That would be like taking 2000/day instead of 3000/day on a 14/7 schedule. But it's [normally] much more tolerable.
Do we think effectiveness is a question of ingesting a certain amount of this stuff over a certain period of time? Philosophical question of the day. . .
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Diana, watery eyes have been a big issue with me. It started before Xeloda with Taxotere. At first it would be a few days and then stop but it has been continual for the past month. Chemo can cause blocked tear ducts. I have a referral to ophthalmologist. I believe they can inset some type of tubes. It does help some to apply warm compresses several times a day. So annoying!!!!!!
For my first two cycles I'm on three pills am and two pm. My onc wants to increase after that to maximum dose which I also thought was 3,000 mg. It appears different centers have different thoughts on dosage. I'm hoping effectiveness is not related to high dosage.
Wendy, interesting info on henna. I'll look into that if needed. A member of my cancer support group uses medical marijuana for pain: she doesn't like the feeling you get when smoked so makes suppositories with THC and CBD oil and has had great results with no "high." I might look into that as well. So far I just have redness and minor soreness.
Lisa
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i just ordered some gel socks yesterday, got them but have not worn yet
They better work as i was shocked on the price for one pair!
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Goldie- I was taken off Xeloda and put onto Kadcyla (TDM1) in Late September. That worked wonders on my liver mets but my most recent brain scan showed 17 new lesions. Do off Kadcyla I went. I am being put back on Xeloda and Tykerb, s combination I was placed in upon my original mets diagnosis in Dec of 2012.
I had been on Xeloda since then until September.
Funny how I am back to where I started.
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I understood dosage was dependant on body surface area (a combination of height and weight) see below and this calculator (Link)
I do feel that starting low could be a good idea. I started at 5 pills twice a day - 5000mg. I went down, after 1 round of unbearable side effects, to 8 pills a day - 4000mg. After a number of rounds Im niw fuen ahain to 6 or 7 pulls a day. I wanted to stay at 7 but decided to drop to 6. I still get issues - and think heat in my feet and hands is a big reason I'm sore. We have just had a new backyard - and having a few jacuzzis has sadly been an issue. I'm working on finding a solution.
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I’m on day 5 of 4000 mgs (4 AM / 4 PM) of X and so far, no major SEs. I did feel minor nausea after first dose, but that’s gone. I am hoping I might escape the HFS, but it may be too early to tell. I’m still doing lots of hand and foot cream applications, so we’ll see
I’m really interested in all of the data being shared about dosage. This thread is so valuable. I’m feeling VERY grateful for all of you who have shared your info. I no longer feel like I’m alone....we’re fighting this disease together, and that gives me hope and encouragement.
Laurie
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well morning all, i do agree these threads are incredibly helpful and even uplifting
Heading to pt this afternoon, this is part of sloan kettering and a big help as i deal with a messed up spine including a tumor at top of my spinem
I had a manicure yexterday, my hands were a mess with peeling skin an sore red areas. My manicure gal is great, she put a drop of cuticle oil on my palms and the back of my hands. At bed time i did my usual cream but them added good old vasaline on my hands, this morning my hands look much better, not to memtion pretty nails. Now i need to deal with mymsore peeling feet!
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Dear Proudtospin,
When I went to Walmart to get some of the lotions I bought, I saw ‘good old Vaseline’ and wondered if anyone had tried it for HFS. I thought at the time it sure would make sense if it worked well...so now we know. Hope your peeling subsides, and you feel better soon.
Laurie
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hello everyone, I start my first dose of Xoleda today. I have bone mets and small diffuse liver mets nearly visual on imagining Between waiting for biopsy and new baseline scans liver has slightly worsened.
I have 4 x500 tabs plus another one from a different box to take and repeat this 12 hours later. I have anti nausea tablets to take 3 times a day. I am starting today but am actually 6hours away from home as it's Easter weekend and I'm away with my family. I hope I have no major problems this weekend. Am reading through this thread for tips.
I take them for 2 weeks and 1 week off for 3 month before scans. Do anyone have success after such a short period especially with liver mets?
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Booboo, good old vasaline is really helping my hands and feet. My feet were looking dark red and peeling. I added a small amount on top of the creme and dang if the redness is not there this morning! Hands are looking more normal as well. Gonna keep using it more, such a simple solution, confess that i always have used it on my lips when dry.
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lillymillie,
my wife had a minor drop in tumor markers after her first cycle, and ambiguous results of her scan after 3 months. In her case, and possibly yours, diffuse liver mets are difficult to visualize change, compared to a larger discrete met that is more easily measured. So, with no signs of progression, the 3 month scan was taken as success, and in the long term, it was.
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ProudtoSpin,
You’ve made a believer out of me....I’m going to get some this weekend. Another old product that has many uses. Next we’ll find out that good old vinegar will take care of something that ails us!!! Love when that happens. LOL!
Laurie
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hope the vasaline helps, dumb thing but also nice and cheap! My toes still hurt, course i have hit my toes against the and the wheels on my rollator so that is a different story, no,solution on that!
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Scwilly, the chart you show is the FDA approved dose. My onc says no one but no one gives that dose. It's a side-effect magnet. On that chart I'd be taking 5000/day. (I'm rather large) I'd have quit that almost immediately. If I can't work and travel I don't want the drug.
I'm so not looking forward to the day when I have to start iv chemo. Unless it's every three weeks or so giving me enough time to do what needs to be done.
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I've been experiencing more and more stomach cramps each cycle ( I'm cycle 8 now) Had Zometa yesterday and severe cramps within an hour. Anyone else have this? MO said to keep taking Reglan and Lactaid which helps a little. Also to dose reduce for a few days and then get back to my 3000 a day by Monday. My GI tract got hit by Gemzar and Carbo which hasn't helped. Ideas?
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I am seeing my Onc on Tuesday, but the nurse mentioned that it would be better to get a lower dose. Its today the first time that I can walk without painkillers to my feet. So strange, I feel amazing, good full of energy, could run a marathon. Its just the damm feet.
Husband11: I am from Europe, and if they take 5000mg, and me "only" 3600mg a day, it seems a lot what i take, but not much compare to those Ladies in Europe.
I cannot imagine that amount not having severe foot pain.
How do they do that ?
I will see what the Onc will say on Tuesday.
Thanks for listening.
Carol
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my feet hurt as well, i have an appt with foot doc as one foot has a corn on bottom of toe, gonna have him remove it bas my home things failed, i also,have ingrown toenails and hope he can help that as well
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proud to spin- I had a podiatrist treat my big toes for ingrownntonsils while on Xeloda. Haven’t had s problem since. I hope it helpsad it did me tremendously.
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thanks, i had heard that docs could help the ingrown toenails, got an appointment so gotta hope he can up
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Hello, interesting post on some TM marker numbers. I am my sisters caregiver, she was diagnosed stage 4 breast metastatic cancer, almost 6 years ago. She has been on Xeloda almost 5 years.
Her CA 27/29 numbers were as high as around 2100, and as low as 12. She now has been bouncing around from 36 to 51. Her Onc is concerned, but she feels fine. Her last scan, last June, showed zero progression, nothing new from years prior.
How are your views and your Dr's view on these numbers as they change and start to rise? Whats a concern? Trending higher? A certain percent jump?
Thanks, Mark J.0 -
Kamala- five years is amazing. I pray we all get five years. My tumor marker has stayed between 55 and mid sixties for several months. Getting to 12 is amazing.
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I agree- this thread is inspiring and so helpful! Five years. Wow! I too have diffuse innumerable liver mets and I'm hopeful that Madam X and I will have a long relationship.
Love the Vaseline suggestion! I'm on day 4 of my 2nd round. Two weeks on one off. Next week we go to San Francisco for a little get away. I really hope that hand/foot stays minimal. So far just some redness and slight burning in hands that comes and goes. If I have to I'll have myself wheeled up and down those hills. I'll pay well. :-)
Lisa
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I just finished my second cycle of 2,000 a day at 14 days on and 7 days off. My feet and hands really started to burn a week ago which was a few days before the end of my second 14 day period.
I also get a weekly Herceptin IV.
My onc wants me to take an extra week off and I will see him April 13. He suggested going down to only 1,000 a day, but I am going to ask to stay on 2,000 at 7 days on and 7 days off.
My feet and hands feel better since I am off, and I don't have any peeling yet.
He will run a CA 15-3 for the first time, and the nurse told me not to take vitamins that morning since it would affect the counts.
I am a 16 year survivor of Stage 4 and have been on chemo the whole time. I am currently almost in remission for chest and lung node recurrence.
I was on Kadcyla for almost 4 years and it made me so constipated that I am still on Miralax and stool softeners to stay regular.
I love Skechers memory foam shoes, which really help.
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my right hand has been peeling, not so much on left, but my poor dumb feet are really not happy. I keep hitting my toes on the rollator that i am using in the house. I also have problems with in grown toenails so my feet are my major issue, peeling is bad so slathing aquafor and old vasaline then putting socks on them and slippers if in the house, but wow on folks doing major years on this med! Congrats!
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My wife found 7 on 7 off much easier to handle. The onc wanted 2 weeks on, 2 weeks off (not very popular it would seem). We did it behind his back, and everything went well, and they didn't know the difference, as they tested my wife's blood every 4 weeks. Still, overall, she is finding ibrance and letrozole easier on her than xeloda. But, its really a trade of one set of side effects for another.
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