All about Xeloda
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Thanks for all your responses girls.....good to know that little SE's doesn't mean X isn't working. All was good at the onc, continue with round 3 & then scans.....fingers crossed!
So sad to hear of Lynn's passing, it always has a profound effect to hear news of another angel.....cancer sucks!!
Karen xox0 -
Ditto, cancer defin. sucks ...
I'm sure the answer to this is somewhere in this thread ... however, will ask anyway, how long does it usually take to know if Xeloda is effective or not? Thanks ...
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Your next scans. That's the only verifiable result I can get.
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I'm scanned about every 3 mo. I understand some meds take longer than others to reveal themselves either way, so that's why I was wondering if this med is one of the ones that takes longer. I also realize all meds work diff. on each of us.
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My first scan after starting showed stable bones and regression in the liver lesions so I guess you could say it smacked them buggers pretty quick. After that it was stable though I hoped for Reggie to hang around some more.
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My first scan showed results. My liver mets are much much smaller after just 3 courses of Xeloda. You should know at your first scans how things are going. It is a great med if you can tolerate the SE.
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I only get scans if my TM jumps up. We start with xrays because mets big enough to compromise the integrity of my bones are big enough to show up on xrays. I'm a cheapskate, what can I say. My TM has been so reliable that I feel comfortable trusting it. As long as I stay steady or go down a bit we assume my chemo is working.
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My first cycle ended last night:
*First half of first week was a breeze, didn't even notice I was on chemo, such that I forgot to watch out for my diet & all. Just needing to nap daily
*Start of second week, I found out X is a chemo after all..nausia & severe stomach pain (started ulcer treatment), extereme fatigue, mouth sores, loss of appetite, increase in shivering / hot flashes episodes (since I'm still on Femara & Lucrin), headaches..
I literally survived on juicing/drinking fresh potatoes half an hour before breakfast & dinner the last couple of days! not bad tasting btw & helped against diarehha. So far for me.
glad it's week off now.. next week for first results on X, thumbs up!
Ebru
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Thanks so much for the input ... I should know soon when I begin this med. First being evaluated for cyberknife, sigh ...
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I didn't know Lynn but I am terribly sorry to learn that we have lost someone else to this disease. My deepest sympathy to all those she touched on this thread and to her family.
I started my 2nd round of Xeloda on Monday after being off for 2 weeks due to radiation burns. Others have mentioned the severe fatigue starting round 2 and you can add me to that list also. Monday was been by far the worst day. Having nausea hit late afternoon also. I have two small cracks in my fingers, one on each hand. Don't understand as I have kept moisturizer on them. Is there anything you do when that happens or do you just keep the moisturizer on until they heal? UGH !!
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Been reading the thread & wondering if anyone's onc has Rx'd Xeloda, unconventionally like mine? She said due to all the harsh SE that show up often in wk 2for and tx is interrupted to give break or change dose etc. She likes to do 1a wk on and one wk off. 2 wk cycles instead of 3.
Anyone esle doing this? If u see your onc soon and feel comfortable can u mention this and see if they have any comments (often they won't as to not question another doc's recommendations but maybe as "you don't know me or the onc" they might. Have always trusted my onc and felt comfortable w/her recommendations for tx but just wondering.
Also,i seem prone to mouth/throat sores. For anyone who has experienced on Xeloda (although we all differ, yes) when did you experience the first ones. Did they down dose you? Did u grin &G bare it w/or w/out a tx for sores? Did it get accumulatively worse? Etc.
Thanks, Jen0 -
Dang stagefree, sorry you've had it so rough. Did you try some Compazine?
Nanium, I've tried lotions, creames, Aloe, and every danged thing I can think of and still I've got cracks. I use Triple Anti-biotic Cream with Pain Relief on the cracks. Cream, not ointment. It really helps with the pain. The nurse practitioner here where I work told me she uses Crisco. She is not on chemo, but has Psoriasis and MS. She said the Crisco is the only thing that soaks in. I'm game, gonna get some Crisco when I go on lunch.
Niffer, I'm on 7/7 also. I hung in there on 14/7 for 6 rounds but I just couldn't take the SE's anymore. I just finished my second round of 7 on (so I'm on my first day of 7 off) and my feet are cracking and my hands are plastic, but I think once I've been on this 7/7 a while maybe everything will heal.
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7/7 is not un common and a study confirmed just as effective. Apparently the max toxicity level is reached on day 7 and going beyond that isn't felt to be tha much more effective.
I think that study is linked somewhere in this thread.0 -
NifferLS - My oncologist started me with 7 days on and 7 days off back in September 2011, with 2,000 in the AM and PM. I was very nauseated, even though I took Zofran and my hand and foot syndrome got so bad he switched it to 2,000 AM and 1,500 PM, SE did not improve so went to 1,500 both AM and PM and eventually to 1,500 AM and 1,000 PM. I asked why it was not 14 days on and 7 off, he said they had found people did better with 7 on and 7 off, as on the 14 days patients would have to take more time off to recover from SE and that 7 7 worked better. I took a break for 6 weeks starting the end of July through September of 2012. When I went for scans the first of September I had progression and went on to take Taxotere and Xeloda, that is when he cut the X down to 1,000 AM and 500 PM 7 on and 7 off. I guess each doctor has what works for them along with input from other doctors and patients. I never had mouth sores, maybe someone else can help you with that. I have been on a chemo break since the middle of January, but my tumor markers went up quite a bit last time so I started on X again, 1,500 morning and evening. I go on April 4 to see if I have to start the Taxotere along with the Xeloda again. Hope this helps some. I am sure there are more of us out there that can help more.
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My onc. started me out in August 2012 with 1000 mg of Xeloda in the AM and 1000 mg in the PM, 2 weeks on and 1 week off. My tumor markers are now in normal range and and the last CT scan showed almost no evidence of the liver lesions. I have had very minimal side effects.
The reason he started me at a lower dose was because last summer I was very ill after being on Navelbine and he wanted to start me on chemo again with something that would be kinder to my body. So far it has worked!
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Wow Joy! Only 1000mg? Lucky you!
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Thanks everyone! Very helpful!
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Has anyone experienced side effects after their Xeloda dosage was increased? I have been taking 1500 AM and 1500 PM two weeks on one week off and I will be starting Ixempra 4/8 and they are going to increase my Xeloda to 2000 Am and Pm. Luckily so far I have had few side effects on the 1500. Deyla
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Deyla, I had a tough time doing the whole 14 days. My hands and feet were starting to tingle and burn and my stomach was going south. I stopped on day 12 and will talk to onc on Monday infusion day.
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Thanks Chick I'm starting to get nervous about it so just wanted to mentally prepare myself. Hope you start to feel better! Deyla
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I feel pretty normal this week. So it does ease off. But of course then you have to go back again. I guess I'll see if the SE's are more manageable this time.
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Hi all. So sad to hear that the wonderful person who stared this less than 2 years ago is no long with us in this continued fight. It makes me cry. I know our time is precious. I am on my first week of resting having just finished 2 weeks of 1500 am & pm doses. so far very little SEs other than nausea and fatigue. I am praying this tx will stop, slow down the bone mets as nothing so far has worked. Not even radiation. Some days I can't get out of bed and then the next day I feel like a million bucks since I've been on this. My bone pain as eased up too. I feel like a lunatic or something as I will feel really good one or two days, then the next day sick to my stomach all day and not wanting to leave the bed. Any thoughts on this? I'm currently on short-term disability too, thank goodness.
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Hi Rangermom!
I have two days under my belt so I've been trying skim through this long thread. I'm also on 1500 mg twice a day. Glad to hear it went well for you -- I'm just worried about the HFS. Already had that from either the adriamycin or the cytoxan. Luckily it didn't get too bad before I had to take a chemo vacation due to low blood counts and that was enough of a break to get a handle on it.
Did your onc give you any meds for the nausea? I've got my reglan and zofran handy. Used the reglan yesterday but didn't have any problems today. My tummy is pretty messed up from all the drugs these last 3-4 years.0 -
Hi Ana - yes, I'm using compazine for nausea and helps. I do have some loose BMs with it but nothing intolerable. I am keeping my fingers crossed that these SE's stay mild like this. However, I did ask my Onc about if they can show up at any time and she says yes, they can, just because I start off good doesn't mean anything? But for now, I'm liking this stuff.
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Rangermom, the SE's are notoriously random and unpredictable. Of course the good thing about that is whatever bothers you today may be gone next day. So hang on. It really is pretty manageable.
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Juicing fresh potatoes saved my stomach & I could complete the first 14 day cycle. Of course, had the entire pack of Zofran etc, but only after juicing potatoes I felt I could hang on for four more days. Suggest you do consider it, seriously..
Ebru
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thanks Chickadee. I've been 2 days now in bed with no energy and feeling kind of down, sick to my stomach. I'm asking myself, what is going on, because just last thursday I felt so good?? In on my first week of no pills. I feel like I'm up one day and down the next. Did you feel like this on them?
Don't you just love those little birds....do you have them in texas where you live?
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Have my very own chickadee family nesting in a birdhouse this year.
I thought the week off meant recovery but have learned it means detoxifying after reaching max toxicity. So sometimes it seemed the SE's are worse the week off. Very annoying.0 -
Thanks Chickadee - I'm on page 12, going back to read all the info on here. I saw many people talked about the depression, the big d (which started today) and fatigue along with the HFS. So from what you are saying and what I've read from others here, after the 14th day, you are maxed on the chemo and then your body is kind of coasting till your next 2 week or 1 week of dosing. Interesting. I didn't know you are supposed to go 12 hours between doses but I did get instructions to take 30 min after eating. I am learning lots on here. I had someone say to me today "are you taking real chemo?" I hadn't thought of it as fake chemo lol. I like how K-lo called it "home chemo." Thank you all for this topic and all the info. Thank you to Lynn1 in Heaven for starting this, she has left a legacy with her words, insight and love
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Hi Gals,
Wanted to post a picture of Naniam (Brenda). We got together last week and had a wonderful visit. She looks fabulous! Although the Xeloda is hard on her and her fingers were cracking and bleeding. But she was as beautiful and classy as ever.
hugs,
Bren
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