All about Xeloda
Comments
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You are quite right
. Fixed again, lol. 0 -
The urea helps to soften the skin, helping to prevent blistering.
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I checked and the one I have does not have urea in it. Maybe I'll check another store.....
The Working Hands seems to be working on the peeling part - much less of that today, but the sensitivity is so bad. It feels like my skin is calloused (like it's almost hard) in some areas and it's more painful in those areas. They don't look that red, but they feel hot to me inside.
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So here I am, a newbie at this. Just diagnosed with mets to the lungs and starting xeloda. What do I need to know????? Haven't heard anything about using hand or foot cream, wasn't given a :xeloda pack" You guys all seem to know so much more than I. Can you help me with catch up?
MJL
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Hi MJL, I'm sorry you've had to join us here, but welcome. I wasn't given a Xeloda pack either, although they tell me one is on the way now. You will want to get some cremes - either Udderly Smooth with Urea or Working Hands (available at Lowe's or online). Some have diarrhea so stock up on Immodium AD just to be safe. So far, I've had constipation so it can go either way. There are several threads about Xeloda - all with great information. You might also want to start your own thread because many won't see this here and everyone will want to welcome you and will be happy to give you tips and help answer your questions.
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Many thanks. I will follow your advice. Never thought I would be back at bc.org. ah well.
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Coke caught me off guard! lol
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I've been off it for 2 weeks now, and my hands are cracking and peeling. Ugh! My skin is flaking off at the creases and near my nails. This stuff sucks.
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You've been OFF it for 2 weeks and still having the side effects? Did they stop it because of the se's or did it start after you quit taking it? Have you tried "Working Hands" yet? It seems to be helping with my peeling. I still have the pain though -- I feel like the bottom of my feet are sunburned.
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I think it's residual. My hands and feet aren't burning, but they're dry and cracked at the folds and the nails. I stopped taking Xeloda becuase I got a scan and it showed more progression :-( I've been moisturizing pretty frequently, and that seems to help. It's pretty gross, though!
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about the white powder.. about 30 years ago I had a job in downtown Kansas City (selling encyclopedias... yes, encyclopedias). There was a pharmacy that had gone out of busines.. one that had been there about 60 years. I was rooting thru the boxes of trash and found an envelope.
,...... an envelope with about 50 packets in it.. one which I opened.. yep pharmaceutical white powder. I took it up to the guys upstairs and gave it to them.. probably didn't help their health any. they were absolutely ecstatic and offered to give me 50 bucks.. I told them i didn't sell drugs.. (i was quite the righteous prude).
I wasn't about to try it, knowing my addictive nature.
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my xeloda SEs waxed and waned.. sometimes I'd have them.. sometimes I wouldn't. It's still like that.. I think I am having a bit of a bad cycle.. but not really.
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Apple: how long have you been on Xeloda now?
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let's see I think I am on my 7th cycle 7 X 3 = 21 weeks total but 3 weeks of nonxeloda thrown in there.. I can feel my nodes in my armpit and neck and feel I am doing very well, as I cannot even begin to feel them presently.
I was fortunate to have a break around cycle 5... unforeseen and unwanted.. but having a several weeks off certainly helped with the side effects which were building up.
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btw.. I found that NOT using cream on my hands was better (during the day). I still put on cream at nite. They didn't peel being dryer.
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dear SE Gods,
My hands are almost normal after Doxil clearance. Please let me have anything but hfs with this one. I feel ready for intestinal problems and promise not to complain, oh genie or god of the side effects, please give me that one. :^)0 -
Apple: I'm so glad things are improving for you. And thanks for sharing your number of cycles...just trying to figure out what to expect in the ones to come.
Kathy: LOL at your Genie of Side Effects....think there really is one? If so, can't I get the usual THREE wishes?! I want no more HFS, no more headaches, and no more constipation. That can't be too much to ask, right? HA! Here's wishing the best for both of us!!
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That may be too much to ask, Lynn. Try asking for neuropathy, that's tolerable. :-p
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Kathy: Oh he** no to the neuropathy. I had that with Abraxane and HATED it. Ok, ok, it was too much to ask.....how 'bout just no HFS and no headaches....I'll deal with the constipation. Oh SE Genie...please grant my wishes!
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I have hand neuropathy now... it's soooo irritating! My oncologist thinks it's leftover from the Xeloda (been off since Oct.)???? But I never had neuropathy when I was ON Xeloda! That's about the only se I didn't have though... I pretty much covered them all from hand/foot to headaches.
Hang in there, Lynn... enjoy the weekend!
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Omg you can't cure stupid. I take my dog to a gorgeous creek. My flip flops drag in the water, so I takem off and walk in sand. Ih oh then a little rock? Not good for pre- foot stresss. Oh SE goddess don't punish me.
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I am interesed in this xeloda pack.....where did you get it?....from your onco's office, Am Cancer society? I am going to start Xeloda on Wed....two weeks on, one off.....at least I hope I am. My onco wanted me to do it with Ixempra, but after what I have read on some of the threads about it and also on the advice of the onco I saw when I went to MDA who I still stay in touch with, I am going to tell my onco I just want to do the xeloda and we can try the other one later if xeloda doesn't work, but I am not ready for a double whammy. So I suppose there could be a chance he will say well if you aren't doing the one, we are going to try something else. The onco from MDA said if I am having bad SEs with the hands and feet ( which as you all said and he said also are cummulative) on about day 12, just don't take days 13 &14....he also said if I don't tolerate the 14 day regime, to switch to the 7 on, 7 off. I am not just going to do this without asking my local onco, but I really think the one in TX is much more caring and tries to help the patient avoid SEs more than my onco here. I find the fact that so many women on the message board have had good results with xeloda very encouraging.
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Mary - I got a "pack" from my MO when I started Xeloda. It isn't anything special, just a neoprene bag with information on Xeloda, a pill sorter for the week, and some Udderly Smooth lotion. The pill sorter is nice, but that's about it.
I hope you are able to tolerate Xeloda well, and that your MO listens to what you want. I've only done one round, but had little trouble with hands/feet. My problems are more fatigue, headaches (not TOO bad), and joint achiness.
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I have never had an actual headache except when I had a really bad sinus infection so this should be interesting if I start getting those. ALthough maybe I did feel like I had a headache with some treatment....neulasta perhaps?...I foget things once they are gone and should have kept a journal on all of this, but it's too late now. Thanks for the info....maybe I will just look for the lotion on my own in the drugstore.
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Today was the beginning of my week off. Started visiting the girls room more and more, if you get my drift. "oh, where are the immodium pills I bought?". So far, maybe too many almonds. Cross fingers and legs.
Got three dozen gloves from Archival Gloves. Good service, free shipping. I think "lightweight" is a mistake. Medium weight better. waiting for shipment of okeefes working hands cream. Then I'm ready!
I'll ask this week how long have t take lovenox twice a day. She'll say, "let's stick with it for a while". My DH and I both know that means forever. Stick is the word, too, my hips are looking like bad tattoos.
Anyone else having fun with xeloda?
Kathy0 -
Oh no Kathy! I was hoping you'd avoid the diarrhea. Hope the Immodium works quickly for you!
You do sound ready with your gloves and lotion. Any HFS symptoms yet? My hands are still ok. My feet have quit hurting so much (I can wear regular shoes now), but they are still peeling a lot. Looks so gross, but doesn't bother me otherwise. I see the onc tomorrow - curious if he will delay starting back just because of the peeling or if we'll start again.
What is Lovenox for? I'm not familiar with that one....
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Oh, so glad to hear your feet feel better. I kept thinking of you when walking barefoot.
Really my hands are almost normal after grade XXX hfs w Doxil. Thats why they spell it w an X.
Crossed fingers, it may have been the almonds. I do feel better equipped to handle the ol' diarrhea. Do y'all remember the BRAT diet for kids? Banana, rice, applesauce, toast?
Today's a good day, hope for y'all too
Oh lovenox is a blood thinner Cancer pts get clots sometimes and I got a doozy All better now but prolly blood thinner for the duration.
Kathy0 -
A blood thinner? And they told me specifically if I'm ever at another doctor and they want to put me on Cumadin (sp?) or any other blood thinnner to tell them "no" - not while on Xeloda. I continue to be amazed at how differently each of our treatments are - even when we are on the same drug!
Glad you're having a good day today - hope you have many more!
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just got back from the doctor and am doing well. I don't know why i can tolerate the side effects this week.. hope it lasts and good luck all you Xeloda takers.. I like it more and more.
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Way to go apple.
Lynn yes we hear so many conflicting directions. My doc is a researcher, so I do have faith in her judgement. She said it was a GOOD time to go on Xeloda. Go figure!0
