All about Xeloda
Comments
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Just ordered the moisturizing gel socks from Amazon and upgraded to same day shipping so I could try them tonight. I've never done that before- does that mean a drone will be at my house soon?
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Rseman, praying it's not brain mets.
Babs.. whoot whoot for those lower numbers.
Nicci, yes we have a high detectable and not sure what our monthly payments are. It's totally ridiculous. My onc always says he wants to treat me, not my scans and not my TM's. I am in no pain whatsoever, so we are staying on Madame X for now and just keeping an eye on the TM's. If they jump again, we may have to switch, or do scans. I've upped my X to 7 pills a day.
Sandi, so sorry about your tootsies. I think this drug is just a strange one, and everyone reacts it to it differently. I hate the burning/watering eyes.
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Sandilee! Don't soak your feet, sister! I did that at first because nobody told me not to, and I was thinking that Epsom salts would draw out bad stuff and make my feet better. But it doesn't work that way with HFS! The next day, so much skin fell off my feet that they were raw in spots. It looked and felt like the endodermis was exposed in places. OUCH OUCH OUCH. I could not walk well for two weeks!!
My onc chastised me up and down, told me to never have my feet in water for longer than a short shower. Believe me, I have obeyed her ever since!
Think of it this way... just like HFS is caused by pressure on the soles and palms which causes the drug to leech through capillaries into the outer skin layer and get trapped there, damaging the skin... similarly, water increases circulation and opens up those capillaries also. Then let's say you add Epsom salts to the mix... which is amazing for drawing out toxins and bad stuff... and voila', you've accidentally created a perfect storm. The warm water and the Epsom salts draw even MORE of the drug chemicals into the outer skin layers.
When I need to take an extra long shower, I sit for some of it so I can lift my feet off the shower floor. My feet have been less sensitive since I started doing this.
I'm so sorry you are having so much trouble. I don't mean to sound bossy, really I don't. I just want everyone here to have happy feet and hands! :-D
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congratulations Babs on your great results - Madame X is really working for you so long may that continue. Thanks Lulubee and others for all the great nutrition tips. I love this area of the discussion boards as I learn something new every day. Just tried the Vicks Vapor Rub and wow it's great - it certainly seems to keep the moisture in for longer. I've been away on business for two days and I checked out of my hotel room which smelled stronglyof Vicks as I left it! I wanted to ask a question about getting CT Scans while on Xeloda. I will be getting my first CT Scan since starting Xeloda in mid May. I am worried about having the scan when I am on a pill taking week as I am concerned that it will interfere with my pill taking routine. You can't eat for six hours before a scan so it may mean that if my appointment is at 9 am, I can't eat breakfast until about 11 am when my scan is over and then this will put me out of sync when I would normally take my second dose in the day. I am also worried about not having anything to eat for six hours. On Xeloda, I feel really ill if I don't eat regularly to the point that I am likely to feel faint especially if have to drink a contrast drink when I feel so yuk! Hopefully I am not sounding like a drama queen but I am feeling concerned about this. What do you all do at scan time on Xeloda?
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Love, I do my meds around 6am and then around 4:30 pm. I don't think if you skip just one dose, it won't make much of a difference. If you are concerned about that, I would ask your onc.
Lulu, you are a wealth of information girl. I don't think I would want to soak my feet either. No hot tubs, no pools, etc.
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Thanks all for your cheers!
Renee- I'm hoping it's not brain mets- and that it's your MO doing his/her job well and watching you carefully.
If my scans are on a meds week, I just skip one dosage and add one to the end because I couldn't figure out any other way.
Lulu I was also told never to soak my feet.
When I saw my MO this week at MSKCC I told her about the Vicks and she said she'll pass it on to her patients-I love that she's so receptive-I've told her all about my wonderful friends on this thread.
Babs
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Wow I second that, lulubee! I hadn't even thought about not being able to get in the pool!
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Thanks, Lulubee. I hadn't thought that it would be bad. I was soaking in cool water, and not for too long- 15 minutes, and it did seem to lessen the redness. But I'll stop, as what you said makes sense. I think the NP and my doc will be alarmed when they see my feet, so I hope they are a lot better by Wednesday, when I go in.
I have my gel socks and gloves now. I wore them last night, and I think they helped a bit. I also am trying a new lotion--O'keef's for the feet. My NP mentioned this to me, info from another patient that had success with it. It seems pretty good, but with just one day of trying.
My toenail seems to be coming off, though, but the pain is less. I hope tomorrow is better.
I think I'm ready to go back to hormonal therapy for awhile. My onc suggested it, but I didn't want to give up on Xeloda too early. I'm ready now!
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Sandi, I would love to give up X, but more afraid of Ibrance and weekly labs. If it's working, why quit? Can you do hormonal's and X?
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My onc says that Xeloda and Tamoxifen (which is what he wants me to try as I've never been on it) don't work together. I don't know if that is the view of everyone in the field, but it's his. I think that Tamox slows down growth, and Xeloda works on fast growing cells, so they sort of cancel each other out.
I wouldn't go on Ibrance with the Tamox- just by itself. Tried Ibrance with Femara and it failed me.
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Babs, I'm a little late, but congratulations on your good markers!
Sandi, how are those feet now? Rsman, any news on you possible brain mets?
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There may be some confusion on the effect of water, which I would like to clarify.
Soaking in cold water or better putting bags of ice on your feet/hands is good, because cold is a vasoconstrictor, that is it shrinks the capillaries thus decreasing the effect of leaking 5-FU (the result of capecitabine, i.e. Xeloda active ingredient, metabolization). Conversely hot water, keeping one's feet very warm, or anything that acts as a vasodilator (dilating capillaries, and Epsom salts act as such) amplifies the HFS side effect of Xeloda.
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CT scan all clear. I can't have an MRI because I have a pacemaker. WhoooHoooo. I'll kick off the weekend this way. Markers are going up but i'm not so much bothered by that right now. They suggest I see a neurological optamologist.
Happy Friday!
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Rseman, that's terrific! Congratulations on such wonderful news!
I have good news, too, I had my first CT after starting Xeloda this morning and the tumors in my liver have gotten smaller, no new growth or new areas for my bone mets, and even looks like some of the existing lesions are filling in bone a bit! Yay, Xeloda!
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Feet are a tiny bit better today. I eased two blisters on my left foot with a sterilized needle- I know some advise against this but it really helps ease the pressure and pain. My right toe is a bit better, too. I don't start again until Wednesday- if I start at all- so I should be able to see some more improvement by then.
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it's a banner day. Congratulations to everyone with good CT scans.
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No tumor markers for me today. Mr. Blood Draw forgot the second vial. Hello???? This is one of the *premiere* cancer hospitals in the country? I am very irritated, but will return next week and they can try again. [He blew the vein so no one could get more later in the day.] I will have scans after two more cycles, assuming that the markers are still looking good.
Hands and feet are not doing well, but they haven't gotten too much worse either. Just have to be careful not to stand for too many hours in one day.
Glad to hear that scans have good results.
*susan*
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Rosses and Rseman-such great news! Both of you need to do the happy dance!!!!
I start back on Madame X tonight. My hands are a mess-of well!
Babs
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Congrats to all that had such good news!!!
I finally got X this morning and took my first 4 pills! Crossing my fingers for good results and no crazy odd side effects.
Hope you all have a wonderful weekend!
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Nicci- good luck! What is your scheduled dose?
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4000 2x day. 8000 total Sound about right?
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NikkiJ, that sounds like a LOT. A whole lot. Did you maybe take two doses at once? Please confirm with your onc before taking that much again. I hope you are okay!
I take 1500 mg twice a day, for a total of 3000 mg per day. This is a standard dose.
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I'm on 2000 msg twice a day -that's after a reduction of 600 msgs daily! It's been a bit better this cycle from a stomach point of view but I can feel my hands start to sting now and at night after work I feel really really tired. I wonder why some of us are larger doses than others? I know it depends on weight and height etc but I am not a big person!
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Rseman, congrats on clean scans. You must be elated! Now to get those TM's down, or perhaps they aren't an indicator for you.
Roses, you too! Congrats.
Lots of good news this morning!
Sandi, what about taking an extra day off? I do that sometimes, but it's usually at the end of my cycle when things are at their worst.
Susan, my feet are too bad either, but like you said, as long asyou are not on them much. Most of my work is computer stuff, so I sit on my arse most of the day.
I'm on 7 pills a day, 500 mg. 3 in the morning, 4 at night. That was my initial dosage a year ago. I said I wasn't going to do it, it was horrible. I broke out in a terrible rash on my face and neck, double over cramps, explosive diarrhea that was like water. Hard to eat, blisters on my lips, tired all the time. I was dropped to 4 pills a day, and have gradually moved back up to 7. I was afraid to try 7, but I guess my body has adjusted. Any light burns the crap out of my eyes. My nails are lifting too, I've been putting Braggs organic cider vinegar behind the nail. It seems to be helping some. They are also very very brittle. I cant' get them to grow at all without breaking. I used to have nice nails. I am 5-9 and 150 lbs. My hands are definitely worse on this larger dose. Every crease is splitting. My knuckles all the way around.
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Nicci. Good luck but def check your dosage. I'm 5'10" and 145 and I take 4000 per day which is the max my MO ever gives. 4 500 mg pills in the AM and 4-500 msg at night unless my SE are bad then I take 3 pills in the AM.
Right now my hands are a bit of a mess
Babs
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Nicci, 16 pills a day? 8000 mg?
NOOOOO, that can't be right. Are you sure they are 500 mg each pill?
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Nicci, it does sound like a lot, but it depends on your height, weight, and dose cycle (and possibly also some things your oncologist is considering that we aren't), so hard to say from here if it's right or not. (I had added a link to Giovanni's info here, but I've edited to delete it so people can just refer to what he writes below--seems more direct that way, thank you for adding the info, Giovanni!)
I'm taking 3000 mg a day, but I'm short and also taking it on a 7 on/7 off cycle, so you correct dosage could be really different depending on your own height and weight, etc. But it does sound kind of high in comparison and it wouldn't hurt to double check.
Good luck! And I hope at whatever dosage, it works wonderfully for you!
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Ok, Nicci, I just reread your post where you said you took your first 4 pills in the morning--that sounds a lot better! If the pills are 500mg like most of us have, that's a lot less scary at 4000 a day! So if the 8000 a day was a typo (and, goodness knows, cancer progression and new chemo drugs are a lot to deal with and the occasional typo is pretty par for the course!) and it's 8 pills a day, that sounds about right and a lot less frightening!
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I have to correct a couple of posts on Xeloda dosage, that I posted a while ago: the dosage recommended by Genentech, based on their clinical trials, is 1250 mg/sq.m. twice a day (previously I had written it was the daily total). As an example, with the height and weight posted by Babs6287, the online body surface calculator gives 2250 mg twice a day.
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Interesting, gciriani. My current dose is 2500 a day, ( two + three). I wonder how that compares to what the
body calculator recommends. I'm 5'5" and 120 lbs. I went to the site you posted and couldn't make heads or tails out of it. I might blame my chemo brain, but I'm not sure that's the whole problem.
I may have to go back to 2000, which seems pretty low, but my feet really are not ok. Well, they are getting better, but i really don't want to go through this again. Not being able to walk due to foot sores is a huge problem.
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