All about Xeloda
Comments
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K-Lo - Thanks for the info on the Zofran. I do take Nexium on a regular basis and I will try taking the Zofran on a regular basis also. Thanks for clearing up the lortab
, I did not know what it was, although I am allergic to hydrocodone. I hate hearing you get that kind of news, it always sets us off a little when they say things like that. I am with you, I want to know the facts and no sugar coating on it. I hope you get better news from the bone scan. I have to say I admire you, Marybe, Livingit for your positive attitudes, along with to many to mention. LivingIt - I have the Zofran as I mentioned and I go see the onco tomorrow and will ask about getting compazine also, maybe between the two or else I will try taking Zofran on a regular basis instead of as needed. I am glad to hear your mouth sore is getting better, they can certainly be painful and was glad to hear you got such a good nap, it can put a whole new outlook on our face.
Apple - I will give your ideas a try, I know exactly what you mean about only wanting to swallow so many times, sometimes you have to force yourself to swallow the food, and if I think about it I can't get it down. Even thinking about starting X on Monday, makes me feel sick to my stomach, but I remember this from 18 years ago when I took the Cytoxan pills, just the thought could make me sick. I love meat but can not handle that, I did have 2 eggs with cheese and milk yesterday, they went down well. I am able to choke down a banana and later an apple. I feel like I have morning sickness all over again that lasts all day, that is how I relate it to people that can't seem to understand. Thanks for the advice on some things that have worked for you, I guess a trip to the store is in my future today.
I hope everyone has a good day and can laugh or smile at least once today
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eating an apple everyday for some reason really helps things work out...
. I really sometimes need my pain killers for the hand foot syndrome.. they help so much, but they are constipating somewhat.. even tho the Xeloda causes diarrhea. I hate stomach discomfort... Watch and see I'll probably get stomach mets. ick. 0 -
Apple - Well I had my laugh for the day when I read your comment, it took me long enough to make the connection. I did not even think about what I was saying when I posted it, and you are right, an apple a day is a good thing. So far the nausea is the only thing really bothering me but then I have only taken the first round of 7 days and am off 7, taking only 3500mg. I have been rinsing 2 to 4 times a day with the salt water solution my onco nurse told me about to help prevent mouth sores. I have neglected the hands and feet though, for which I will probably be sorry later. When I tried the bag balm my feet burned when I used it and the nights I did not use it they did not bother me, and I always forget to use hand lotion so I need to get better about that stuff. I will have to try the udder cream that was suggested. Thanks for the today. I am off to get blood work done so I can have the results tomorrow when I see the onco. 0
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Actually, I DO see it very much as a gift! One of the very few positives you can find about this dx. I guess I just think it's a bit morbid that I think about dying as much as I do.
Mustang: So sorry about the big D. I hope some Immodium or something will help you get through these last few days till your break.
Livingit: Awesome about the no new mets after all!! I'm sorry fatigue is hitting you so hard though. Good thing you are able to take naps during the day. They would probably frown upon that at my office. LOL! ;-)
Suze: I am so sorry about your news. Of course you are always welcome here. Once a Diva, always a Diva!
Blondie: I hate it that you are stil having all these se's even after your break from this. That just really stinks!! When do you see your onc again?
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well good news is tm down from 283 to 57 with the kick azz xeloda that made me horriblely sick, lol so he said he is still lowering it so will have to see tuesday, so xeloda does work!!!
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Good news Blondie. Wish I'd been on X all along
Bone scan tomorrow. Kinda bummed about this back thing. I don't want to walk around bent over and it's starting to feel like I might. Does radiation worsen the defect?0 -
Hi, ladies. I have been reading your thread with interest as I will be starting Xeloda soon. I have been on Abraxane for 6 months, Halavan for 6 months and am just coming off of Carbo/Gemzar which did nothing for me. My recent liver mets grew (bones look ok) and markers are through the roof so my onc is hitting it hard with Xeloda, Navelbine, and Avastin. We will hopefully drop the Navelbine if things improve quickly. Thanks so much for this thread. I was prepared to ask for one week on and one week off before he even suggested it!
Susan0 -
K-Lo, I had rads two years ago to a large met in two of my vertebrae in my c-spine. I haven't had one bit of trouble with it since and have had scans galore. I keep asking about it and my onc says it's just fine.
Susan0 -
Clemson93 - Hope the xeloda and other chemos are kind to you, and that they kick the moster back to the curb. SUE
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Here's the lyrics to My Sharona. who wants to work on a fun parody?
http://www.stlyrics.com/lyrics/realitybites/mysharona.htm
I got a little start..... maybe we will find a better melody to use. And, yes, I am crazy.
When I put the X in me, the X in me,
Always kinda troubles my mind
XELODA!
Then it does its trix in me, trix in me
Oh, you're gonna give me more TIME
XELODA!
My my my my XELODA!
TIIIIIME! Whoa!
My my my my XELODA!
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Thank you all for your kind thoughts. I wish the Xeloda had worked as it was pretty darn easy! But onwards and upwards as they say.
Lynn - if it is morbid, then I'm right there with you. I try and enjoy each day for what it brings, knowing that my time is more limited. But I've also been thinking about death since the day I was originally diagnosed, I just can't not go there. I'm a planner, and it is part of planning.
Clemson - I hope the Xeloda is gentle and effective for you! It seems to be doing good things around here :-).
K-Lo - I hope your back improves with the radiation. Good luck with your bone scan tomorrow.
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I hope to all that takes it that is is good to you. although for me it worked but 4,000mg a day 14 days on 7 days off, I will NEVER do that dosage again, stilll getting the SE's out of my system....
Zometa went ok, waiting for the SE's to start!!
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Lynn1 - I am sorry if I sounded like I was preaching. I went back and read what I wrote and it certainly seemed to come across that way. I was just trying to be a "cheerleader", I was never a cheerleader and now I know why
. I totally agree with you about thinking about death more. I am not sure I would go so far as to call it a "gift", maybe a better word would be a "gag" gift. I find myself thinking about what I need to do before I die and think, hey you better get a move on, you don't have as much time as you thought. Anyway, I apologize if I offended you. Blondiex46 - I hope you get to feeling better soon. I guess I am lucky in that Zometa never ever bothers me and I have taken it for 2 years.
K-Lo - I enjoy your posts so much, they really make me laugh and you are always so upbeat, you go girl. I will be praying that you get good results from your scans.
I was wondering if the nausea ever goes away, I have only taken one week of it. This is my week off and today it the first day it has not been to bad. I thought it would get better when I was on the off week. I do have some Zofran and will start taking that when I start again on Monday. I tried the eating thing every few hours but it did not make any difference. Any suggestions would be greatly appreciated. I was at the oncologist today for my monthly checkup and the tumor markers had gone up, but I kind of expected that because I have only had one week of X and this is my off week. I figure it will be a few months before I know if it is going to work.
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YEA no SE's from Zometa was waiting for the shoe to drop and it didn't....yea...
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Kathy, "my sharon a is Genius!!".
Sounds like we all need to go to the Xeloda Day Spa. This ia a place with floors made of fleece where you can bask by the pool or lounge in the Library with your feet up and a cool drink in hand. In no time at all either Marco or Raoul will be along to smooth lotion on your feet and hands ( or whatever) while Demitri does a tasteful dance to entertain you. No need to worry about appetite at the X Day Spa as you will be offered the finest tidbits throughout the day. These wii be lifted gently to your lips from the finest china by the caring hands of Sven the chef.
It turns out that I did have progression which just means I'm on the right treatment plan. I must say day 14 of cycle 1 was tough. Had to pull over to loose my lunch which would have been no biggie but my 10 yr old son was with me and said it was scary for him. Hate when that happens. Still with the sleeping all day and generally feeling like crap. Looking forwad to a week off to see what kind of healing it will bring.
I'm so glad this med is working for Blondie. You deserve a brake.
Also k-lo I'm sorry about your back. Let us know what the scans said.0 -
K-Lo
On radiation to the spine: I've had three bouts of spine rads for mets. Each time the tumors went from "hot" or growing to dead just like that. The rads were terrific at stopping the bone pain too! I seem to remember that there is some risk of something to do with the stability of the bone (osteoporosis maybe?) but for me the tumors in multiple levels haven't reared their ugly heads since being zapped.
When I had T3 zapped it cooked part of my esophagus and it took a long time for swallowing to pretty much normalize. That's why I hope X gets my new upper T spine mets cause I don't want to cook my throat and stomach again! Really not sure I oils face it. So here's hoping!0 -
How painful is that rads on the throat. Living it sorry about the X....am nervous myself about going back on it, my hands and feet are still peeling and fingernails coming up and eyes watering and it has been 3 weeks since I had it.....although I know it probably worked....
Bones are hurting and found lump on right arm, showed the nurse and my friend that goes with me, at least getting scanned next month. Zometa last wednesday and dr. on tuesday will show him the lump.
No rads for me got it in 1996 and they won't do it again!!!
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Blondie "well good news is tm down from 283 to 57" that is great news.. yay
and k-lo.. i hope our back gets better.
I find it interesting that the xeloda side effects are so variable.. one cycle i'll have fatigue another, i'll have horrible hand foot syndrome. travelling without creams to apply at nite with gloves and socks taught me GOOD. I'll never be without them again. As a pianist organist, i found my hands really tight, not as stretchy.. I could still play but the cracks in the creases of my thumbs.. let's just say ouch together. My hands are pretty much back in shape but I am starting another cycle. I am SOOOOOOOOOOOOOOOOOO glad it is working.. I almost think i could live for a while with only medication side effects. I so want to get my kids raised. They only did like one load of laundry the five days I was gone. and tho i can see that they did do the dishes occasionally....
well, it's nice to be depended on.
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I'm saying "Good-bye" to my Xeloda Diva buddies. AFter 4 months of enduring painful feet and fingers, watching the skin peel like a snake, and soaking my feet in ice water, my recent scan shows progression in both lungs, liver, and ribs, plus new lesions in sternum area. DRAT!!!! Now onto somthing else, praying that it will work better. Hope the XEloda works better for all of you than it did for me!
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grammadebbie - so sorry that the xeloda didn't do the job. Somebody on these boards once wrote that when one drug fails you, it is a great opportunity to move on to the drug that Will do it for you! Best of luck, my sister, and keep on truck'n. SUE
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Grammadebbie: Didn't work for me either.... but there are others out there that WILL! Thinking of you and let us know what you go to next.
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Grammadebbie It didn't work for me either. I am on Taxol/Carbo right now and it seems to be the winning ticket. Tumor markers going down, down, down...bashing that cancer! Can't wait to get a scan...maybe in October. Good luck with your next treatment!
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can't wait to get a scan??? what a great outlook you must have at the moment. good luck Cathy2
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jeanieb: no offense taken at ALL!
Blondie: Yay for no se's from the Zometa!! I'm not sure if I've mentioned this to you before or not, forgive me if I have, but when I was on Zometa, I would take 2 Tylenol right before my infusion and I never had any issues at all with it. As with anything, run it by your onc first, but it worked for me so always like to share when something works!
GrammaDebbie: I am so sorry X did not work for you. Wishing you the very best on your new treatment!! HUGS!!
Since this is the thread I visit the most here, I just wanted to let you all know that I'm going to be taking a break from the boards (at least as much as I can - I still lurk even when I say I'm going to take a break!) Probably will be back after October is over. See, I have no issue whatsoever with the pink stuff, but I come here and all I read is hate and bitterness and anger. I'm not discounting anyone's feelings, but it's just too much for me. It's easier if I just avoid it. Also, I've been seeing less encouraging and positive talk and more words inducing fear and worry in others and I don't need that right now either. So anyway, just best for me personally to avoid this place as much as I can for awhile. As I said, will probably still be lurking and checking in on fave peeps to see how you all are doing. Much love to you all - see you in about a month! xoxo
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grammadebbie sorry it didn't work for you, my hands and feet are still peeling and I haven't had it in 3 weeks and they are also red. They will find something else.
I am off of it also, have to go tomorrow and see what he will do, getting scanned next month and he said it is all good the TM are down, but want to see the scan....
Well Lynn1 sorry that you feel as though you have to leave and that you didn't get what you came for. For me, I like what people are saying, this is a recurrence for me so I have been dealing with this off and on since 1996, you are still new to it and it isn't more painful for you then me but I also hate all the pink stuff, Breast Cancer Awareness Month, October has always been very painful and a constant reminder to me that it could come back and it did. In October it is always about awareness, well we are way past awareness, and they talk about early detection, blah, blah, blah, but they never talk about what happens when it has metasized, it is like a secret and October means nothing to me...
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Ooops...just to clarify: I am not leaving for good...have tried that, but always come back - lol....I'm just taking a break for now. I do get what I came here for most of the time, but from my perspective there is just too much negativity here nowadays so I need a break from that to get my mind back in the right place. It was a recurrance for me as well....about one year from original dx to mets being found, but you do have me beat on time - my original dx was in 2003. October means nothing to me either - I just don't have anything against it either. No hard feelings toward anyone...promise!...just need to get away from what I am perceiving (only me) is very negative undertone here lately. Best wishes to you all. Ok, now I really am gone -- gotta turn off the email notifications! Doh!!!
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oh good, glad to here it, I take from it what I need and leave the other behind....I have enough drama with my 5 kids and grandchildren then I can deal with.
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Thanks Lynn1!! I feel you and I did the same thing and I removed my notfications, now I just come back every so often. I need POSITIVITY in my life but I also need reality!! these boards give me both. Good luck with your break!!
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Lynn 1 - I hope you see this post, as I sent you a private message.
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Has anyone have balance issues on X? I seem to list to the right when I am sitting. Yesterday I dropped the scooter on myself trying to go up a driveway. Today I fell in my daughter's bathroom petting a cat. I feel like I got beaten up.
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