Xeloda for colon cancer - Scared about side effects and need support

Posted by leed2022 @leed2022, Dec 8, 2022

Hello, I was diagnosed with stage 3A colon cancer after surgery because 1 lymph node out of 35 came back with cancer. I am supposed to start Xeloda in a couple of weeks for 6 months, and worry about how I will function working from home, taking care of my two little dogs, and living with the side effects. I am all alone and very scared, and would appreciate knowing how others dealt with taking Xeloda and how they managed through the process. Thank you.

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@leed2022

Hi There, just checking in to see how your trip was during your recent week off, and how things are going so far with your new cycle? You had mentioned you were going to meet with your doctor, and I do hope that all was favorable with that visit. I did not have any problems during my second cycle, and today I started my week off again, which is very welcome indeed. Let me know how things are on your end, and I will be in touch once I start my third cycle next Monday. Take care.

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Hi there. Thanks for keeping in touch. I'm pleased to hear your treatment is going well. After my difficult 2nd infusion of Oxaliplatin things improved a lot with the third last Thursday after my oncologist tweaked the regime with a dose of Piriton and steroid before the infusion, which was also diluted with some glucose solution – little or no discomfort at all, due also perhaps to a better vein being used. But it takes a few days to flush it through the system whilst also taking Xeloda and so the pattern seems to be tiredness for the first few days and some constipation, such as today! But then it gets rapidly better which enabled another lovely few days away on the coast last week and lots of walking / good food. I'm looking forward very much to a repeat of this in 10 days time, before the start of the fourth and final cycle. Yippee!
It's very encouraging to read the experience of Chris @cpchef above except for the neuropathy he has had to endure. Keep a positive outlook and we'll all get there!
Let me know how your third cycle goes next Monday. All best. Martin

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@martin77

Hello. A steady improvement, thanks, since the low point of a week ago but yes looking forward very much to ending this second cycle on Thursday and having another week off, during which my wife and I will have a few days away on the south coast. (We're lucky in having north, east and south coasts all within 2 hours of where we live.) It was the Oxaliplatin infusion that knocked me for 6 this time (sorry, this is an English cricket term in case you don't know!) due, I think, to the cannula not fitting as well as the first time. I seem to be coping with Xeloda reasonably well, except perhaps during the first week whilst the Oxaliplatin is still in the system. Managing bowel movements remains the order of the day but certainly better than the first cycle. 4,000 steps achieved yesterday but only 2,100 so far today.
I hope you find your second cycle goes better than the first. Well done on getting back to work – that's fantastic news.
I'm seeing my oncologist this evening and will report on my 'journey' the outcome of this.
It's so useful to compare experiences. Keep in touch.

Jump to this post

Hi There, just checking in to see how your trip was during your recent week off, and how things are going so far with your new cycle? You had mentioned you were going to meet with your doctor, and I do hope that all was favorable with that visit. I did not have any problems during my second cycle, and today I started my week off again, which is very welcome indeed. Let me know how things are on your end, and I will be in touch once I start my third cycle next Monday. Take care.

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Hello all,
I am a 47 yr old male and
I had Capox treatment for stage 3b colon cancer after my resection in 2017. The side effects I had mostly were the tingling of nerve endings and the cold sensitivity as well as pretty significant fatigue for a few days after my infusions every two weeks. I was able to continue working full time as a chef taking days off to recoup after my infusions. The weeks when I did not have the oxaliplatin I felt pretty good usually. I would suggest checking in regularly with your oncologist about the neuropathy, if you experience it, and if towards the end of your treatment you feel as if it is worsening to have your dosage lowered or stopped altogether. I felt this and did not say anything because I was anxious to get my treatment over with and now even 5 plus years later I have the neuropathy in my feet and legs and fatigue which makes it very difficult to do my job as a chef and has severely limited my earning potential. The good news is I had no evidence of disease since my treatment! I feel compelled to mention this lasting side affect of neuropathy because I really think there is a better way and if it can be avoided it should since it has drastically reduced my quality of life. Best of luck to you all! Chris

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I was never put back on the xeloda or radiation. I got very sick from doing that which is why I went to Moffitt Cancer center to get another opinion and when I went there the surgeon said I’ll give you a consent form and you can think about it and I said I don’t have to think about it I’m signing the consent form. It was the best decision . The doctors up at Moffitt did the surgery and removed the cancer. I had an ileostomy and had a temporary colostomy for 10 months and I did six months of chemo with a colostomy bag. All I can say is that when I think about all of that it’s like a dream and I can’t believe that I went through all of that, however, that was eight years ago and so far I’m OK if you have any other questions feel free to contact me I’ll try to help you anyway I can and I hope you’re successful😊

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Hello @philly318 I saw some of your posts and wanted to check to see if you are in Philadelphia? I am from there and had lived there most of my life, but now am in the southwest (in the U.S.). When you were on chemo, was it just the Xeloda (Capecitabine) pills or the IV, or both? It's always helpful to compare notes and share experiences with others who are in the same boat. I wish you well on your road to recovery, and Yes, the treatment side effects can be a royal pain in many ways. Take care!

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@martin77

Hello. A steady improvement, thanks, since the low point of a week ago but yes looking forward very much to ending this second cycle on Thursday and having another week off, during which my wife and I will have a few days away on the south coast. (We're lucky in having north, east and south coasts all within 2 hours of where we live.) It was the Oxaliplatin infusion that knocked me for 6 this time (sorry, this is an English cricket term in case you don't know!) due, I think, to the cannula not fitting as well as the first time. I seem to be coping with Xeloda reasonably well, except perhaps during the first week whilst the Oxaliplatin is still in the system. Managing bowel movements remains the order of the day but certainly better than the first cycle. 4,000 steps achieved yesterday but only 2,100 so far today.
I hope you find your second cycle goes better than the first. Well done on getting back to work – that's fantastic news.
I'm seeing my oncologist this evening and will report on my 'journey' the outcome of this.
It's so useful to compare experiences. Keep in touch.

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Hi There, thanks for the update, and I am very happy that your second cycle is somewhat better. I will be thinking of you this evening when you meet with your doctor, and hope that your news is favorable. It seems you are really navigating the whole process quite well, and I know that we both will succeed in getting the maximum benefit from all of these cycles. Keep up the good work and I do hope you and your wife enjoy a lovely break away from all of the treatment. It's always therapeutic to mix as much fun as possible with the daily challenges. Safe travels. Will keep you posted as I continue through the rest of this cycle.

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@leed2022

Hello, how have you been doing since our last post to each other? I just finished my week off and started back on Xeloda this morning for my 2nd round. I hope that things will go better this time, but at least I am more prepared in case I get the first sign of a problem. I also start back to work today, but at least I work from home, so that in itself is a great blessing. If I am correct, this coming Thursday you will finish your second week for this cycle and then have another week off, yes? I do hope things have been better for you this time around. Let me know the latest when you get a chance, and I will do the same. Wishing you the very best.

Jump to this post

Hello. A steady improvement, thanks, since the low point of a week ago but yes looking forward very much to ending this second cycle on Thursday and having another week off, during which my wife and I will have a few days away on the south coast. (We're lucky in having north, east and south coasts all within 2 hours of where we live.) It was the Oxaliplatin infusion that knocked me for 6 this time (sorry, this is an English cricket term in case you don't know!) due, I think, to the cannula not fitting as well as the first time. I seem to be coping with Xeloda reasonably well, except perhaps during the first week whilst the Oxaliplatin is still in the system. Managing bowel movements remains the order of the day but certainly better than the first cycle. 4,000 steps achieved yesterday but only 2,100 so far today.
I hope you find your second cycle goes better than the first. Well done on getting back to work – that's fantastic news.
I'm seeing my oncologist this evening and will report on my 'journey' the outcome of this.
It's so useful to compare experiences. Keep in touch.

REPLY
@samuelg1950

I went through four rounds of xelox infusions combined with cepecidabine. I functioned very well during the first two rounds up until the last day of treatment. Within 3 days of completion, I became extremely dehydrated, brought on by severe Diarrehea. As a result, I was hospitalized for 3 weeks. I was going to stop treatment but discussed it with my oncologist and we decided to give it another try with a reduced chemo dosage. This time I had the same reaction and was hospitalized again with severe dehydration. It's been 7 months since I completed treatment. So far, all is good and I'm on the road to recovery. My advice is to closely monitor your vital signs each day and STAY HYDRATED. You will get through it. If you get diarrehea, take immodium immediately to stay ahead of it.
Wishing you all the best.

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Hello, I am so sorry you experienced such a rough time during your treatment. I do hope you continue to do well, and will never have to go through that again. I am currently just taking the Capecetabine 500mg tablets (3 tablets 2/day), 14 days on and 1 week off. I am now in my second cycle. I was doing okay during the first week of cycle one, but by the 2nd week, started having constipation. I had to take a stool softener and some prune juice, and then it was all fine. I hope not to go through that again, as it was very uncomfortable, but nothing like what you experienced. It could very well have been the IV, as I hear that is often the cause of many problems. Everyone is different, and having cancer in general is not something any of us want to deal with. I will pray that going forward you do not have to get anymore treatment, and continue to recover. Thank you for sharing your experience and for the advice. I sure will make sure I stay hydrated. All the best.

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@leed2022

Hello, how have you been doing since our last post to each other? I just finished my week off and started back on Xeloda this morning for my 2nd round. I hope that things will go better this time, but at least I am more prepared in case I get the first sign of a problem. I also start back to work today, but at least I work from home, so that in itself is a great blessing. If I am correct, this coming Thursday you will finish your second week for this cycle and then have another week off, yes? I do hope things have been better for you this time around. Let me know the latest when you get a chance, and I will do the same. Wishing you the very best.

Jump to this post

I went through four rounds of xelox infusions combined with cepecidabine. I functioned very well during the first two rounds up until the last day of treatment. Within 3 days of completion, I became extremely dehydrated, brought on by severe Diarrehea. As a result, I was hospitalized for 3 weeks. I was going to stop treatment but discussed it with my oncologist and we decided to give it another try with a reduced chemo dosage. This time I had the same reaction and was hospitalized again with severe dehydration. It's been 7 months since I completed treatment. So far, all is good and I'm on the road to recovery. My advice is to closely monitor your vital signs each day and STAY HYDRATED. You will get through it. If you get diarrehea, take immodium immediately to stay ahead of it.
Wishing you all the best.

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@cnso

Checking in with you to see how you are doing on your treatment.

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Hello, I was not sure who this message was intended for, martin77 or me (leed22). How are you doing? I personally am okay and am starting back on the Xeloda after my first week off. Hope it goes well and that all of us will get through this without too much more difficulty. Take care.

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