Has anybody taken oral drug for Chemo?
Comments
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Xeloda
Xeloda is the brand name for Capecitabine. If you do a search of posts you'll find a LOT of info on it. I'm on xeloda now and have had wonderful success with it. There are side effects but I have found them more managable than 5fu.
As far as trials go, I wouldn't dismiss them. Any of the protocols that you listed are reasonable and your husband will get excellent treatment in a trial. I used to hear the horror stories from other patients about getting mri's and I just told them they need the study/trials staff. I was treated like the goddess that I am! LOL
Good luck,
Kimby0 -
Thank you verykimby said:Xeloda
Xeloda is the brand name for Capecitabine. If you do a search of posts you'll find a LOT of info on it. I'm on xeloda now and have had wonderful success with it. There are side effects but I have found them more managable than 5fu.
As far as trials go, I wouldn't dismiss them. Any of the protocols that you listed are reasonable and your husband will get excellent treatment in a trial. I used to hear the horror stories from other patients about getting mri's and I just told them they need the study/trials staff. I was treated like the goddess that I am! LOL
Good luck,
Kimby
Thank you very much,Kimby.Yes,I did look up into the medications listed in the four groups,I found out they are the regular medications that have been used in colon cancer for a while,they should be reliable. Thanks a lot for your reply.0 -
Xelodakimby said:Xeloda
Xeloda is the brand name for Capecitabine. If you do a search of posts you'll find a LOT of info on it. I'm on xeloda now and have had wonderful success with it. There are side effects but I have found them more managable than 5fu.
As far as trials go, I wouldn't dismiss them. Any of the protocols that you listed are reasonable and your husband will get excellent treatment in a trial. I used to hear the horror stories from other patients about getting mri's and I just told them they need the study/trials staff. I was treated like the goddess that I am! LOL
Good luck,
Kimby
HI Kimby
how long have you been on xeloda? I've been on it about 6 months and am doing fine but I'm on a low dose. I take 6 pills a day for one week and then off for two weeks. I had too many blisters on my feet with the two weeks on and one week off.
JIll0 -
Xelodajillpls said:Xeloda
HI Kimby
how long have you been on xeloda? I've been on it about 6 months and am doing fine but I'm on a low dose. I take 6 pills a day for one week and then off for two weeks. I had too many blisters on my feet with the two weeks on and one week off.
JIll
I am on the Esophageal board, but read these boards many times. I was on Xeloda for a solid 6 months, with no breaks at all, 8 pills every day, and I had minimal side effects, no blisters or anything...so I think it all depends on the person, but I will say the chemo injections I had were much worse than the pills. The Oxiplatin I was on caused the most side effects, I believe.
Cathy0 -
Lots of thanks to Cathy andkitten0385 said:Xeloda
I am on the Esophageal board, but read these boards many times. I was on Xeloda for a solid 6 months, with no breaks at all, 8 pills every day, and I had minimal side effects, no blisters or anything...so I think it all depends on the person, but I will say the chemo injections I had were much worse than the pills. The Oxiplatin I was on caused the most side effects, I believe.
Cathy
Lots of thanks to Cathy and JIII.Thanks for the information you provided.0 -
Xeloda
I also was on the pill form of Xeloda during radiation. I had very minimal side effects from this. Everyone reacts different to medications so if you or husband notice anything you should always bring it up to your oncologist or the nurses.
Kim0 -
on the pill
I'm on the pill (Xeloda) now. As others have said, this is a pill form (slightly different but essentially the same) of 5FU, which is a very long-standing "standard" treatment for colorectal cancer.
As to whether you should participate in a clinical trial: I don't have personal experience but, as you note, all the "arms" (options) are fairly well-known treatment protocols -- and my understanding is that sometimes you get better care (ie more testing, supervision) if you are in a clinical trial than you would otherwise. So, as someone else has said, I wouldn't necessarily rule it out....unless you feel you know already you would prefer one of the treatments....
Good luck to you
Tara0 -
trying different dosagesjillpls said:Xeloda
HI Kimby
how long have you been on xeloda? I've been on it about 6 months and am doing fine but I'm on a low dose. I take 6 pills a day for one week and then off for two weeks. I had too many blisters on my feet with the two weeks on and one week off.
JIll
Hi -- not to hijack this message. I was on a two week on, two week off schedule. 4 pills in am 4 in pm. Starting having serious problems with feet. I'm now trying 3 pills am 3 pm -- but still on a 2 week on 2 off plan. I'm on the first cycle of this new regime and so far so good. I know my onc is hoping to boost me back up to maybe 3 am 4pm (same schedule) but I think I'll plee for staying on this at least one more cycle.
It really is a matter of balancing the optimal dose with the manageable side effects, isn't it. Like you (?) I'm on maintenance chemo now and I have a slightly different attitude. When I knew there was a finite time (say 12 cycles), I felt I could battle on thro fairly gruesome side effects -- because it would end. But now I'm on this "indefinitely", I feel I need to negotiate something which is effective but also allows me good quality of life.....
T0 -
Lots of thanks to all oftaraHK said:on the pill
I'm on the pill (Xeloda) now. As others have said, this is a pill form (slightly different but essentially the same) of 5FU, which is a very long-standing "standard" treatment for colorectal cancer.
As to whether you should participate in a clinical trial: I don't have personal experience but, as you note, all the "arms" (options) are fairly well-known treatment protocols -- and my understanding is that sometimes you get better care (ie more testing, supervision) if you are in a clinical trial than you would otherwise. So, as someone else has said, I wouldn't necessarily rule it out....unless you feel you know already you would prefer one of the treatments....
Good luck to you
Tara
Lots of thanks to all of you.Thanks for all the information and suggestion.I posted message for my husband,he was diagnosed with rectum cancer stage II on 22nd,May right after I arrived the U.S for a month(I am Chinese).I am still in the shock and fear,yesterday when I was talking with the nurse I couldn't help crying.My husband hasn't started the treatment yet,the oncologist still needs a MRI to see if my husband will be allergic to medications.The oncologist offered this as an option,but he said at the end of the day,it's supposed to be our decision instead of pleasing him.We are still thinking of this and also looking up into it.Thanks a lot to everybody.0 -
encouragementFight for my love said:Lots of thanks to all of
Lots of thanks to all of you.Thanks for all the information and suggestion.I posted message for my husband,he was diagnosed with rectum cancer stage II on 22nd,May right after I arrived the U.S for a month(I am Chinese).I am still in the shock and fear,yesterday when I was talking with the nurse I couldn't help crying.My husband hasn't started the treatment yet,the oncologist still needs a MRI to see if my husband will be allergic to medications.The oncologist offered this as an option,but he said at the end of the day,it's supposed to be our decision instead of pleasing him.We are still thinking of this and also looking up into it.Thanks a lot to everybody.
Hello,
I feel for you- a cancer diagnosis is definitely a scary thing. Just know that with "only" a stage II diagnosis, your husband's prognosis is very good. There are many patients on this board with stage III and even stage IV who are now doing very well or are even considered NED (no evidence of disease- what they used to refer to as "in remission"). There are so many new treatments available today.
The oral chemo you've asked about, Xeloda, is also great because taking pills is definitely easier than going in for chemo infusions or being hooked up to a chemo pump! You may have heard of 5FU being administered in a pump. Xeloda is the oral pill form of this and is much, much easier to take! I have taken both and I seem to have less side effects with the Xeloda (although I've heard that isn't true for everyone). With the Xeloda, the dosage you're given is what makes the difference. Obviously, the higher the dose, the more profound the side effects would be. My side effects have been issues with diarrhea and some hand/foot syndrome which includes some skin peeling on the bottoms of my feet and sore, sensitive skin also on the bottoms of my feet. Good lotions help with these symptoms.
I think if your husband is considering to take the Xeloda or take nothing, I'd go with the Xeloda. You want to do everything possible to help ensure that there's no recurrence.
Best wishes and God bless,
Lisa0 -
Thank you very much,Lisalisa42 said:encouragement
Hello,
I feel for you- a cancer diagnosis is definitely a scary thing. Just know that with "only" a stage II diagnosis, your husband's prognosis is very good. There are many patients on this board with stage III and even stage IV who are now doing very well or are even considered NED (no evidence of disease- what they used to refer to as "in remission"). There are so many new treatments available today.
The oral chemo you've asked about, Xeloda, is also great because taking pills is definitely easier than going in for chemo infusions or being hooked up to a chemo pump! You may have heard of 5FU being administered in a pump. Xeloda is the oral pill form of this and is much, much easier to take! I have taken both and I seem to have less side effects with the Xeloda (although I've heard that isn't true for everyone). With the Xeloda, the dosage you're given is what makes the difference. Obviously, the higher the dose, the more profound the side effects would be. My side effects have been issues with diarrhea and some hand/foot syndrome which includes some skin peeling on the bottoms of my feet and sore, sensitive skin also on the bottoms of my feet. Good lotions help with these symptoms.
I think if your husband is considering to take the Xeloda or take nothing, I'd go with the Xeloda. You want to do everything possible to help ensure that there's no recurrence.
Best wishes and God bless,
Lisa
Thank you very much,Lisa, for your kind words and encouragement.My husband would like to take pills for chemo,he said this way he doesn't have to suffer being stung by the nurse.But since this is a clinical trail,the oncologist said the group that he is in is going to be selected by computer randomly,so we don't know if my hubby is really going to have a chance to take the pill.But it looks like my hubby is very interested in it,he says no matter which group he is in,he is going to offer some data to the research,this is going to help with research.We are still looking into it.I am just hoping that the medication will work well on my husband,but as everybody knows,even if the oncologist prescribes medications for you,it may work or may not work.We are still thinking,we just want to make the right choice.Thanks a lot to everybody here!0 -
Thank you verytaraHK said:trying different dosages
Hi -- not to hijack this message. I was on a two week on, two week off schedule. 4 pills in am 4 in pm. Starting having serious problems with feet. I'm now trying 3 pills am 3 pm -- but still on a 2 week on 2 off plan. I'm on the first cycle of this new regime and so far so good. I know my onc is hoping to boost me back up to maybe 3 am 4pm (same schedule) but I think I'll plee for staying on this at least one more cycle.
It really is a matter of balancing the optimal dose with the manageable side effects, isn't it. Like you (?) I'm on maintenance chemo now and I have a slightly different attitude. When I knew there was a finite time (say 12 cycles), I felt I could battle on thro fairly gruesome side effects -- because it would end. But now I'm on this "indefinitely", I feel I need to negotiate something which is effective but also allows me good quality of life.....
T
Thank you very much,taraHK,thanks a lot for sharing your experience with my husband!0 -
A Port?Fight for my love said:Thank you very much,Lisa
Thank you very much,Lisa, for your kind words and encouragement.My husband would like to take pills for chemo,he said this way he doesn't have to suffer being stung by the nurse.But since this is a clinical trail,the oncologist said the group that he is in is going to be selected by computer randomly,so we don't know if my hubby is really going to have a chance to take the pill.But it looks like my hubby is very interested in it,he says no matter which group he is in,he is going to offer some data to the research,this is going to help with research.We are still looking into it.I am just hoping that the medication will work well on my husband,but as everybody knows,even if the oncologist prescribes medications for you,it may work or may not work.We are still thinking,we just want to make the right choice.Thanks a lot to everybody here!
Does your husband not have a port? It's just a device that is implanted near your collarbone, which you can even get a double line that would help in distributing the medicine, and the blood draws..it's raised abit under the skin, and I use a lanocaine cream that I glob on it a couple hours before a stick, because the cream numbs the skin area, and it I don't feel the sticks at all! he may "taste" the flushes of heparin, and saline and meds, but that's ok, I would suggest he get one so that his arm does not get too beat up by all the needles and IV's...I find it most helpful.
I don't take the pills, but who know, she may suggest it after my treatment for maintenance, but I do hear good results and yucky side effects with it, but it can be done
Just have him think positively, and know he can do this!
Hugssss!
~Donna0 -
Thank you veryShayenne said:A Port?
Does your husband not have a port? It's just a device that is implanted near your collarbone, which you can even get a double line that would help in distributing the medicine, and the blood draws..it's raised abit under the skin, and I use a lanocaine cream that I glob on it a couple hours before a stick, because the cream numbs the skin area, and it I don't feel the sticks at all! he may "taste" the flushes of heparin, and saline and meds, but that's ok, I would suggest he get one so that his arm does not get too beat up by all the needles and IV's...I find it most helpful.
I don't take the pills, but who know, she may suggest it after my treatment for maintenance, but I do hear good results and yucky side effects with it, but it can be done Just have him think positively, and know he can do this!
Hugssss!
~Donna
Thank you very much,Donna,thank you very much for the idea of cream.My hubby hasn't started the treatment yet,so we don't know what options we are going to have.Anyway thank you very much for your kind words.0 -
xelodaFight for my love said:Thank you very
Thank you very much,Donna,thank you very much for the idea of cream.My hubby hasn't started the treatment yet,so we don't know what options we are going to have.Anyway thank you very much for your kind words.
I was on xeloda instead of 5FU and had terrible gi side effects; switched to 5FU IV and they were really reduced. I was scared of the port since I lived far from my doc but actually after having both a groshon and a power port for over a year, it is not a problem at all. I don't use the numbing cream, just take a big deep breath when they access it.
Serrana0 -
Thank you veryserrana said:xeloda
I was on xeloda instead of 5FU and had terrible gi side effects; switched to 5FU IV and they were really reduced. I was scared of the port since I lived far from my doc but actually after having both a groshon and a power port for over a year, it is not a problem at all. I don't use the numbing cream, just take a big deep breath when they access it.
Serrana
Thank you very much,Serrana.Thanks a lot for your answer.0 -
Hi, I also took Xeloda for about 8 months. We started out with 2 weeks on and one week off taking 8 pills a day.
I had side effects from the drug - my feet began developing big cracks and eventually split open, making it very difficult to walk or even stand up with out pain. Over time, my feet would peel like onions.
We switched my schedule to one week on and one week off, at 6 pills a day and my feet continued to be raw and red, but could make it through.
What I found helped was a cream called Bag Balm - this is an udder cream with good emollient properties that keep your feet moist and it helps restore that moisture that the drug is taking from you. You slather it on your feet and then put socks over them to hold the moisture in. Over time it helps.
My doctor should have told me what to expect, so I could have jumped on the prevention earlier. If your husband starts to complain, have him try this.....it really will help.
-Craig0 -
Thank you verySundanceh said:Hi, I also took Xeloda for about 8 months. We started out with 2 weeks on and one week off taking 8 pills a day.
I had side effects from the drug - my feet began developing big cracks and eventually split open, making it very difficult to walk or even stand up with out pain. Over time, my feet would peel like onions.
We switched my schedule to one week on and one week off, at 6 pills a day and my feet continued to be raw and red, but could make it through.
What I found helped was a cream called Bag Balm - this is an udder cream with good emollient properties that keep your feet moist and it helps restore that moisture that the drug is taking from you. You slather it on your feet and then put socks over them to hold the moisture in. Over time it helps.
My doctor should have told me what to expect, so I could have jumped on the prevention earlier. If your husband starts to complain, have him try this.....it really will help.
-Craig
Thank you very much,Craig.Yesterday we went to see the oncologist after the MRI,the oncologist told my hubby that he is not going to be a candidate for the clinical trial from the MRI result(We understand they are looking for a certain type of candidates),so he won't be able to have a chance to take oral pills.My hubby will just take the rountine treatment which is 5-FU for 6 weeks and radiation for 5+1/2 weeks before surgery.Hopefully all these treatment before sugery will work well on my hubby and after sugery my hubby will have a good prognosis.Again,Craig,thank you very much.0
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