Question to all who did or are doing Xeloda:
Did anyone else have a similar scedule for Xeloda, esp if you ended up with a colostomy? I'm curious....
Thanking in advance those kind enough to respond....
Comments
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Thanks...Kenny H. said:I did Xeloda Mon-fri (3000mg
I did Xeloda Mon-fri (3000mg daily) whole time on radiation. Think was at least 6weeks.
Then after a 6 week waiting period had perm colostomy surgery. Now waiting on round 12 mop-up chemo infusion.
my mop-up was scheduled for nine rounds but I got knocked out after the fourth.......FOLFOX without oxi aint FOLFOX but at that time I feared the oxi more than anything.(sorta like a boilermaker without the Scotch!!).....0 -
different
Hi Steve,
When I was on Xeloda (3 different times), I took it for 2 weeks. When I took it along with irinotecan and Avastin and when I took it with Gemzar and Avastin, both times I was on a 3 week cycle- I'd get chemo infusions once a week for 2 weeks in a row, then have a week off before repeating. I'd take the Xeloda for 2 weeks straight starting with the first day in the cycle of getting the other chemo infused by IV.
Another time I was on Xeloda for maintenance and took it alone without anything else and I was still on the 2 weeks on, 1 week off routine.
I did, however, have a terrible time with hand/foot syndrome & am wondering if your onc and maybe some others who might do a different schedule, may be doing it for shorter stints of time in order to avoid some of the side effects that can go along with it. When my side effects got so bad that my hands were peeling, blistered and shaking and I could barely walk due to blisters on my feet from it, I talked to my onc about changing the schedule into one week on, one week off instead. His worry was that I wouldn't be getting enough of the drug to work on my tumors. Instead, we opted to switch to the 5FU pump with leucovorin again. I've always hated the pump, but appreciate being on it now because the 5FU doesn't give me the bad hand/foot side effects like Xeloda did. I'm way more tired now, though- don't know if it's from the switch or not.
I would question your onc about why he/she picked the Xeloda schedule that he/she did. Not that there's anything wrong with it, it's just that if I were you I'd just like to know the reasons behind things.
Best wishes to you-
Lisa0 -
Actually, Lisa, i'm supposed to be in a clinical trial whichlisa42 said:different
Hi Steve,
When I was on Xeloda (3 different times), I took it for 2 weeks. When I took it along with irinotecan and Avastin and when I took it with Gemzar and Avastin, both times I was on a 3 week cycle- I'd get chemo infusions once a week for 2 weeks in a row, then have a week off before repeating. I'd take the Xeloda for 2 weeks straight starting with the first day in the cycle of getting the other chemo infused by IV.
Another time I was on Xeloda for maintenance and took it alone without anything else and I was still on the 2 weeks on, 1 week off routine.
I did, however, have a terrible time with hand/foot syndrome & am wondering if your onc and maybe some others who might do a different schedule, may be doing it for shorter stints of time in order to avoid some of the side effects that can go along with it. When my side effects got so bad that my hands were peeling, blistered and shaking and I could barely walk due to blisters on my feet from it, I talked to my onc about changing the schedule into one week on, one week off instead. His worry was that I wouldn't be getting enough of the drug to work on my tumors. Instead, we opted to switch to the 5FU pump with leucovorin again. I've always hated the pump, but appreciate being on it now because the 5FU doesn't give me the bad hand/foot side effects like Xeloda did. I'm way more tired now, though- don't know if it's from the switch or not.
I would question your onc about why he/she picked the Xeloda schedule that he/she did. Not that there's anything wrong with it, it's just that if I were you I'd just like to know the reasons behind things.
Best wishes to you-
Lisa
I had signed up for while my head was still spinning somewhere, shortly after Dx as Tx was approaching...I know instinctively it sounded OK (I'm supposed to be one of seventy-five) as no placebo was involved and the variable ,if I recall, was the delivery schedule of the Xeloda......In all honesty, I'm probably the only a***ole without an a***ole who DID NOT seek a second opinion....I was so scared and the way my situation was described to me, I felt something needed to be started ASAP, that to delay figuring out where/who to go to next would truly complicate things....In any event,as my lung doc had referred me in the past to an outstanding psychiatrist when one was needed, I trusted his judgement totally when he sent me to a surgeon and then the women who would be my oncologist and radiologist. Time will tell .....steve0 -
Steve
I took Folfox for 5 treatments, was taken off of it and placed on Xeloda only. Started out 3,300 mg, lowered to 3,000 mg, lowered to 2,000 mg after which, Onc stopped my chemo. Had 4 tx w/Xeloda which was 14 days on, 7 days off which I *think* is kind of standard? When I was having so many problems with the chemo I believe it was Craig that suggested that I should ask for 7 days on, 7 days off...but I never got that far to ask.
I don't have a colostomy nor did I have radiation so circumstances are different in our cases.
-Pat0 -
thank you, Pat, i believe our staging differed which undoubtedlyJaylo969 said:Steve
I took Folfox for 5 treatments, was taken off of it and placed on Xeloda only. Started out 3,300 mg, lowered to 3,000 mg, lowered to 2,000 mg after which, Onc stopped my chemo. Had 4 tx w/Xeloda which was 14 days on, 7 days off which I *think* is kind of standard? When I was having so many problems with the chemo I believe it was Craig that suggested that I should ask for 7 days on, 7 days off...but I never got that far to ask.
I don't have a colostomy nor did I have radiation so circumstances are different in our cases.
-Pat
explains difference in Tx as well as perhaps size,location,etc of tumor when Dxed......0 -
thank you, Pat, i believe our staging differed which undoubtedlyJaylo969 said:Steve
I took Folfox for 5 treatments, was taken off of it and placed on Xeloda only. Started out 3,300 mg, lowered to 3,000 mg, lowered to 2,000 mg after which, Onc stopped my chemo. Had 4 tx w/Xeloda which was 14 days on, 7 days off which I *think* is kind of standard? When I was having so many problems with the chemo I believe it was Craig that suggested that I should ask for 7 days on, 7 days off...but I never got that far to ask.
I don't have a colostomy nor did I have radiation so circumstances are different in our cases.
-Pat
explains difference in Tx as well as perhaps size,location,etc of tumor when Dxed......0 -
thank you, Pat, i believe our staging differed which undoubtedlyJaylo969 said:Steve
I took Folfox for 5 treatments, was taken off of it and placed on Xeloda only. Started out 3,300 mg, lowered to 3,000 mg, lowered to 2,000 mg after which, Onc stopped my chemo. Had 4 tx w/Xeloda which was 14 days on, 7 days off which I *think* is kind of standard? When I was having so many problems with the chemo I believe it was Craig that suggested that I should ask for 7 days on, 7 days off...but I never got that far to ask.
I don't have a colostomy nor did I have radiation so circumstances are different in our cases.
-Pat
explains difference in Tx as well as perhaps size,location,etc of tumor when Dxed......0 -
Tripled repliescoloCan said:thank you, Pat, i believe our staging differed which undoubtedly
explains difference in Tx as well as perhaps size,location,etc of tumor when Dxed......
LOL...Your reply was tripled Steve. I mainly answered your post because in the thread title it says "all who did Xeloda" but really just wanted to say "Hey". I know our circumstances were very different.
-Pat0 -
Nevertheles,appreciate response and now that i think about it,Jaylo969 said:Tripled replies
LOL...Your reply was tripled Steve. I mainly answered your post because in the thread title it says "all who did Xeloda" but really just wanted to say "Hey". I know our circumstances were very different.
-Pat
you are absolutely correct. I should have been much more specific in my title.....I have trouble getting this @**^&&%$# laptop to function as it should and I've only had it since Dec....My second one went up in flames when it started burning and the first one, which I got in Jan 2009, crashed after six months....i must be doing something wrong.....Also, used to be the fastest typist you've ever seen using only two fingers, one from each hand....At work years ago, when they switched from manual/electric typewriters to computers and word processing and all the manual typewriters were removed from all offices, I was the ONLY mgr who still had the old white manual.......Typed so hard, all my memos,instructions,reports,reponses, everything, literally had tiny holes in the letter "o".......Use to drive one of my "superiors" up the wall......0 -
Another chiming in
Hey Steve... I thought I'd throw my .02 in while the dog has stopped ordering me about (she wants to go outside, I said "in a few minutes")
Ok... like everyone else, our situations are slightly different (well, maybe in medical terms they are very different since no two people have the exact same condition or response to treatments).
I had surgery (colon resection) prior to taking any chemo. I then was on the FOLFOX which was to be the standard 12 treatments. Around treatment 5, I was switched over to Xeloda because I was to start radiation (Mon-Fri) for 6 weeks. While doing the radiation, my onc figured the FOLFOX, along with the pump, would probably cause more inconvenience and discomfort, while having to do the daily radiation... BUT... she did want me to still be getting chemo into my system, hence the convenient pill form. I do NOT recall having any problems at that time with the Xeloda, so it was very convenient. At that time I was on it daily for 2 weeks, then 1 week off. Once he radiation was finished, I went back to the FOLFOX, with the 48 hour pump. I lasted until Cycle 9... when my onc took me off the Oxy since I was having pretty bad neuropathy and nerve damage problems. This past spring (2010) I was put back on Xeloda but this time, like Lisa, I had some bad responses to it. I didn't get the blistering, peeling skin... but it seemed to attach the already damaged nerves and made the neuropathy worse. So, my onc changed the schedule and I would be on it Mon-Fri for two weeks, then the third week off (so weekends were off and the third week was off). But after three months, the Xeloda stopped working... so we went on to something else (Irinotecan). We don't know if the Xeloda stopped working because I wasn't getting enough on the new schedule, or if the cancer just became immune to it. There was no sense trying to go back to daily for 2 weeks, since I had such a bad reaction to it.
Not sure if any of that helps... but I think what this answers is... oncologists should be looking at each patient as individuals and what is considered "standard" may not work for everyone... so if it doesn't, they need to be open to changing things around and figuring out a different schedule that will work for the patient, but at the same time is still giving enough meds to be doing the job right.
Cheryl0 -
I had similar dosage of
I had similar dosage of xeloda like yours when I had my neo-adjuvant chemotherapy and radiation. I usually take it days during weekdays when I have my radiation and it's usually off during weekends. I had the xeloda for 25 days. Yes, the tumor has shrank but still I had a colostomy. I'm also currently on my 5th session of chemotx now with xeloda and oxaliplatin. Honestly, aside from the fatigue, the hand and foot syndrome is nil and the neuropathy is very minimal. And the diarrhea that had during my neo adjuvant chemotx now, I'm having more of a constipation. Still have 3 more sessions to go, I'm more afraid of the oxaliplatin and my side effects with this drug is more serious than xeloda, w/c is intense fatigue, but still working 3 days a week to be more active and to take ofmy mind from cancer. Take care steve and many thanks!0 -
I had similar dosage of
I had similar dosage of xeloda like yours when I had my neo-adjuvant chemotherapy and radiation. I usually take it days during weekdays when I have my radiation and it's usually off during weekends. I had the xeloda for 25 days. Yes, the tumor has shrank but still I had a colostomy. I'm also currently on my 5th session of chemotx now with xeloda and oxaliplatin. Honestly, aside from the fatigue, the hand and foot syndrome is nil and the neuropathy is very minimal. And the diarrhea that had during my neo adjuvant chemotx now, I'm having more of a constipation. Still have 3 more sessions to go, I'm more afraid of the oxaliplatin and my side effects with this drug is more serious than xeloda, w/c is intense fatigue, but still working 3 days a week to be more active and to take ofmy mind from cancer. Take care steve and many thanks!0 -
Being that prior to surgery I did Xeloda and Oxi while I stillCherylHutch said:Another chiming in
Hey Steve... I thought I'd throw my .02 in while the dog has stopped ordering me about (she wants to go outside, I said "in a few minutes")
Ok... like everyone else, our situations are slightly different (well, maybe in medical terms they are very different since no two people have the exact same condition or response to treatments).
I had surgery (colon resection) prior to taking any chemo. I then was on the FOLFOX which was to be the standard 12 treatments. Around treatment 5, I was switched over to Xeloda because I was to start radiation (Mon-Fri) for 6 weeks. While doing the radiation, my onc figured the FOLFOX, along with the pump, would probably cause more inconvenience and discomfort, while having to do the daily radiation... BUT... she did want me to still be getting chemo into my system, hence the convenient pill form. I do NOT recall having any problems at that time with the Xeloda, so it was very convenient. At that time I was on it daily for 2 weeks, then 1 week off. Once he radiation was finished, I went back to the FOLFOX, with the 48 hour pump. I lasted until Cycle 9... when my onc took me off the Oxy since I was having pretty bad neuropathy and nerve damage problems. This past spring (2010) I was put back on Xeloda but this time, like Lisa, I had some bad responses to it. I didn't get the blistering, peeling skin... but it seemed to attach the already damaged nerves and made the neuropathy worse. So, my onc changed the schedule and I would be on it Mon-Fri for two weeks, then the third week off (so weekends were off and the third week was off). But after three months, the Xeloda stopped working... so we went on to something else (Irinotecan). We don't know if the Xeloda stopped working because I wasn't getting enough on the new schedule, or if the cancer just became immune to it. There was no sense trying to go back to daily for 2 weeks, since I had such a bad reaction to it.
Not sure if any of that helps... but I think what this answers is... oncologists should be looking at each patient as individuals and what is considered "standard" may not work for everyone... so if it doesn't, they need to be open to changing things around and figuring out a different schedule that will work for the patient, but at the same time is still giving enough meds to be doing the job right.
Cheryl
had my illustrious tumor in me, I honestly can't determine what caused what or which caused the most misery....The runs were nonstop and I would call for car service (afraid to continue driving by second week or sooner) when I felt I might be able to go the distance/time to cancer center without sheet sprewing all over the place and myself and invariably upon reaching center, would beeline to a bathroom (found every damn one, including those "reserved" for staff, which, if needed, I made use of if unoccupied......The neuropathy,mouth sores,extreme fatigue, lack of appetite, jaw/mouth pain upon eating/drinking, the aversion to things cold (if you accidentally drink something cold and you feel like you're choking--if you can,stay calm and try to drink warm liquid),etc.....All i can say is tat when this phase ended and the radiation burn really intendsified, my bowel movements became solid, tho thin and at times like jelly beans,nevertheless little pai, no runs, it felt great and I begged all my docs to let me continue like this and hold off the surgery.......As you all know, it don't work like that....Thanks Cheryl.....agree totally with your concluding remarks and hopefully, whenever someone describes their experience(s) someone headed in that direction will learn something to ease their own journey.....0 -
Being that prior to surgery I did Xeloda and Oxi while I stillCherylHutch said:Another chiming in
Hey Steve... I thought I'd throw my .02 in while the dog has stopped ordering me about (she wants to go outside, I said "in a few minutes")
Ok... like everyone else, our situations are slightly different (well, maybe in medical terms they are very different since no two people have the exact same condition or response to treatments).
I had surgery (colon resection) prior to taking any chemo. I then was on the FOLFOX which was to be the standard 12 treatments. Around treatment 5, I was switched over to Xeloda because I was to start radiation (Mon-Fri) for 6 weeks. While doing the radiation, my onc figured the FOLFOX, along with the pump, would probably cause more inconvenience and discomfort, while having to do the daily radiation... BUT... she did want me to still be getting chemo into my system, hence the convenient pill form. I do NOT recall having any problems at that time with the Xeloda, so it was very convenient. At that time I was on it daily for 2 weeks, then 1 week off. Once he radiation was finished, I went back to the FOLFOX, with the 48 hour pump. I lasted until Cycle 9... when my onc took me off the Oxy since I was having pretty bad neuropathy and nerve damage problems. This past spring (2010) I was put back on Xeloda but this time, like Lisa, I had some bad responses to it. I didn't get the blistering, peeling skin... but it seemed to attach the already damaged nerves and made the neuropathy worse. So, my onc changed the schedule and I would be on it Mon-Fri for two weeks, then the third week off (so weekends were off and the third week was off). But after three months, the Xeloda stopped working... so we went on to something else (Irinotecan). We don't know if the Xeloda stopped working because I wasn't getting enough on the new schedule, or if the cancer just became immune to it. There was no sense trying to go back to daily for 2 weeks, since I had such a bad reaction to it.
Not sure if any of that helps... but I think what this answers is... oncologists should be looking at each patient as individuals and what is considered "standard" may not work for everyone... so if it doesn't, they need to be open to changing things around and figuring out a different schedule that will work for the patient, but at the same time is still giving enough meds to be doing the job right.
Cheryl
had my illustrious tumor in me, along with radiation,I honestly can't determine what caused what or which caused the most misery....The runs were nonstop and I would call for car service (afraid to continue driving by second week or sooner) when I felt I might be able to go the distance/time to cancer center without sheet sprewing all over the place and invariably upon reaching center, would beeline to a bathroom (found every damn one, including those "reserved" for staff, which, if needed, I made use of if unoccupied)......The neuropathy,mouth sores,extreme fatigue, lack of appetite, jaw/mouth pain upon eating/drinking, the aversion to things cold (if you accidentally drink something cold and you feel like you're choking--if you can,stay calm and try to drink warm liquid-the feeling will also fade on its own but TRY not to panic)),etc.....All i can say is that when this phase ended and the radiation burn really intensified, my bowel movements became solid, tho thin and at times like jelly beans,nevertheless little pain (used Aquaphor,silverdine and sitz), no runs, it felt great and I begged all my docs to let me continue like this and hold off the surgery.......As you all know, it don't work like that....Thanks Cheryl.....agree totally with your concluding remarks and hopefully, whenever someone describes their experience(s) someone headed in that direction will learn something to ease their own journey.....0 -
I'm amazed at how you and others were capable of workingdjm_2010 said:I had similar dosage of
I had similar dosage of xeloda like yours when I had my neo-adjuvant chemotherapy and radiation. I usually take it days during weekdays when I have my radiation and it's usually off during weekends. I had the xeloda for 25 days. Yes, the tumor has shrank but still I had a colostomy. I'm also currently on my 5th session of chemotx now with xeloda and oxaliplatin. Honestly, aside from the fatigue, the hand and foot syndrome is nil and the neuropathy is very minimal. And the diarrhea that had during my neo adjuvant chemotx now, I'm having more of a constipation. Still have 3 more sessions to go, I'm more afraid of the oxaliplatin and my side effects with this drug is more serious than xeloda, w/c is intense fatigue, but still working 3 days a week to be more active and to take ofmy mind from cancer. Take care steve and many thanks!
during Tx....I'd retired three years before diagnosis but seeing how I reacted during Tx (mostly bedridden) and knowing my job requirements (i was on midnights and hated every second of it,for four years in the early 80s and then my last ten (of 33+, the other nineteen years or so on nights, which I had preferred) --and as a mgr I went where assigned, as seniority only counted for bidding on vacations) when my doc tod me I had CRC and my head was still doing what that girl did in the "Exorcist", i was also gently informed that I would need a colostomy-now my head was like those early computer ping pong games,back and forth,left to right, up and down.....Was in a daze for first month or so.....
The preop chemo and rad undoubtedly did their job as tumor was reduced in size tho when cut open,unseen before was a spread going upwards so the anticipated durationof the procedure in creased threefold as did its complexity, or so told when conscious....
Hope you continue doing well and none of us need to go thru this nightmare again.....steve
Oh yeah, I forgot what proved to be extremely important--findng this site a month after surgery where so many of you taught me how to live with a bag and equally vital, that you can live with a bag......I get too emotional reading my first cries for help as some warriors are no longer......0 -
This comment has been removed by the ModeratorcoloCan said:I'm amazed at how you and others were capable of working
during Tx....I'd retired three years before diagnosis but seeing how I reacted during Tx (mostly bedridden) and knowing my job requirements (i was on midnights and hated every second of it,for four years in the early 80s and then my last ten (of 33+, the other nineteen years or so on nights, which I had preferred) --and as a mgr I went where assigned, as seniority only counted for bidding on vacations) when my doc tod me I had CRC and my head was still doing what that girl did in the "Exorcist", i was also gently informed that I would need a colostomy-now my head was like those early computer ping pong games,back and forth,left to right, up and down.....Was in a daze for first month or so.....
The preop chemo and rad undoubtedly did their job as tumor was reduced in size tho when cut open,unseen before was a spread going upwards so the anticipated durationof the procedure in creased threefold as did its complexity, or so told when conscious....
Hope you continue doing well and none of us need to go thru this nightmare again.....steve
Oh yeah, I forgot what proved to be extremely important--findng this site a month after surgery where so many of you taught me how to live with a bag and equally vital, that you can live with a bag......I get too emotional reading my first cries for help as some warriors are no longer......0 -
Hello, my name is judy and i have cancer, again.CherylHutch said:Another chiming in
Hey Steve... I thought I'd throw my .02 in while the dog has stopped ordering me about (she wants to go outside, I said "in a few minutes")
Ok... like everyone else, our situations are slightly different (well, maybe in medical terms they are very different since no two people have the exact same condition or response to treatments).
I had surgery (colon resection) prior to taking any chemo. I then was on the FOLFOX which was to be the standard 12 treatments. Around treatment 5, I was switched over to Xeloda because I was to start radiation (Mon-Fri) for 6 weeks. While doing the radiation, my onc figured the FOLFOX, along with the pump, would probably cause more inconvenience and discomfort, while having to do the daily radiation... BUT... she did want me to still be getting chemo into my system, hence the convenient pill form. I do NOT recall having any problems at that time with the Xeloda, so it was very convenient. At that time I was on it daily for 2 weeks, then 1 week off. Once he radiation was finished, I went back to the FOLFOX, with the 48 hour pump. I lasted until Cycle 9... when my onc took me off the Oxy since I was having pretty bad neuropathy and nerve damage problems. This past spring (2010) I was put back on Xeloda but this time, like Lisa, I had some bad responses to it. I didn't get the blistering, peeling skin... but it seemed to attach the already damaged nerves and made the neuropathy worse. So, my onc changed the schedule and I would be on it Mon-Fri for two weeks, then the third week off (so weekends were off and the third week was off). But after three months, the Xeloda stopped working... so we went on to something else (Irinotecan). We don't know if the Xeloda stopped working because I wasn't getting enough on the new schedule, or if the cancer just became immune to it. There was no sense trying to go back to daily for 2 weeks, since I had such a bad reaction to it.
Not sure if any of that helps... but I think what this answers is... oncologists should be looking at each patient as individuals and what is considered "standard" may not work for everyone... so if it doesn't, they need to be open to changing things around and figuring out a different schedule that will work for the patient, but at the same time is still giving enough meds to be doing the job right.
Cheryl
I jumped in here to say hi. i feel like i am in the twilight zone. i had/have colon cancer .
had a resection, lasted 5 years 2 months and it came back in the liver. had chemo, liver resection, chemo and ended treatments feb. 2010. Just got my port out a couple months ago.
bloodwork perfect, but pain around the surgical hernia. So they sent me for a cat. it showed a lesion on the liver, so another ct/pt scan. And an appt. with the surgeon on the 11th of april. they are pretty sure its cancer agsin. I have been on zeloda, and folfax, avastin and others you have mentioned. I just don't remember the routine. I have neuropathy in my feet, my hands are better. The last round of chemo did it.
I can't believe its back, I really thought the chemo would take care of it. I read your stories and think how lucky you are to have each others support. I am lucky in so many ways, and most of the time i do know that. Just not tonight. Anyone going around for the 3rd time? Or is everyone? Does it just keep coming back no matter what? Thanks for any input. Prayers for all of you. Judy0 -
Hi Judyjjaj133 said:Hello, my name is judy and i have cancer, again.
I jumped in here to say hi. i feel like i am in the twilight zone. i had/have colon cancer .
had a resection, lasted 5 years 2 months and it came back in the liver. had chemo, liver resection, chemo and ended treatments feb. 2010. Just got my port out a couple months ago.
bloodwork perfect, but pain around the surgical hernia. So they sent me for a cat. it showed a lesion on the liver, so another ct/pt scan. And an appt. with the surgeon on the 11th of april. they are pretty sure its cancer agsin. I have been on zeloda, and folfax, avastin and others you have mentioned. I just don't remember the routine. I have neuropathy in my feet, my hands are better. The last round of chemo did it.
I can't believe its back, I really thought the chemo would take care of it. I read your stories and think how lucky you are to have each others support. I am lucky in so many ways, and most of the time i do know that. Just not tonight. Anyone going around for the 3rd time? Or is everyone? Does it just keep coming back no matter what? Thanks for any input. Prayers for all of you. Judy
Welcome to the forum. I am very sorry you are fighting this beast again. I have not been cancer free since I was diagnosed ~ 2 years ago. We all have tough days/nights; I hope tomorrow is better for you. I think you will find participating here will be really helpful.0
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