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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@martin77

Day 3 now since starting chemo last Thursday and all going well. The infusion procedure was better than expected - no pain / discomfort and a good lunch whilst it took place. A great hospital team - I'm using a private hospital for chemo. The pre-warned side effects of tingly fingers when touching cold objects (I've been wearing thin cotton gloves) and a strange momentary jaw / throat spasm when eating / drinking coolish foods / drinks, which soon goes after a few deep warm breaths.
Now into serious pill popping each day - 3 tablets of Xeloda twice a day + steroids + anti-sickness pills. The steroids run out today and so I might well be on a steroid high at the moment!
I think exercise is all important. My target is 3,000 steps a day, achieved Friday but not yesterday, all done indoors because it's still -2C here where we live in the UK and I've been told not to take gulps of cold air as this will trigger the jaw / throat spasms. I've also just taken delivery of an exercise bike!
Yes, a good family / friend support group is essential too and I'm lucky in that respect. I hope the same goes for you and that you have a joyous Christmas.

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Hello, I have been thinking about you and about how things are going. Except for the few issues you mentioned, it sounds as though you are tolerating the treatment very well so far. I am glad you have a good medical team, and have such wonderful support. It's interesting that you are having a problem with the jaw/throat spasms. I have not read or heard that Xeloda causes those problems as a side effect, but I suppose everyone is different. Is your throat closing up when this happens? I do hope those symptoms subside soon, and that you don't experience more discomfort. I will be starting in another week, but the chemo nurse called me to go over the instructions. When I mentioned my anxiety about side effects, she said in a very positive tone that I would be fine and shouldn't have any problems. I will take Ondansetron 4mg before I eat breakfast to avoid getting nausea. Wait about 20-30 minutes and have breakfast, and then take the Xeloda (three 500mg tablets right after eating). I am to follow this routine before dinner, and the days that follow, but if I need to take more Ondansetron before that time, I can take it 4 hours apart. I have taken Ondansetron in the past and other medical professionals have said every 4 hours is fine, and even in some cases, patients have been given 8mg at one time for severe issues, but I would not recommend this to anyone with out speaking to their doctor. The anti sickness pills you are speaking of may be the Ondansetron (or known as Zofran). There are other anti nausea medicines that can be given if a patient does not respond to the Ondansetron. I like your idea about the exercise, and I would think that helps with any fatigue one may experience during this treatment. I think I will also try that, even if it means just walking in the inside hallway of my apartment building. I do have two chihuahua mixes that I love dearly, and I take them out several times a day, but it can be difficult during the winter, especially if you have bad weather. They don't even like to be out for very long. I appreciate your sharing information about your journey so far, and I will be in touch again once I start my treatment next week. Meanwhile, I hope you and your family have a lovely and safe holiday season, and by all means, stay warm.

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@leed2022

Hello, I have been thinking about you and about how things are going. Except for the few issues you mentioned, it sounds as though you are tolerating the treatment very well so far. I am glad you have a good medical team, and have such wonderful support. It's interesting that you are having a problem with the jaw/throat spasms. I have not read or heard that Xeloda causes those problems as a side effect, but I suppose everyone is different. Is your throat closing up when this happens? I do hope those symptoms subside soon, and that you don't experience more discomfort. I will be starting in another week, but the chemo nurse called me to go over the instructions. When I mentioned my anxiety about side effects, she said in a very positive tone that I would be fine and shouldn't have any problems. I will take Ondansetron 4mg before I eat breakfast to avoid getting nausea. Wait about 20-30 minutes and have breakfast, and then take the Xeloda (three 500mg tablets right after eating). I am to follow this routine before dinner, and the days that follow, but if I need to take more Ondansetron before that time, I can take it 4 hours apart. I have taken Ondansetron in the past and other medical professionals have said every 4 hours is fine, and even in some cases, patients have been given 8mg at one time for severe issues, but I would not recommend this to anyone with out speaking to their doctor. The anti sickness pills you are speaking of may be the Ondansetron (or known as Zofran). There are other anti nausea medicines that can be given if a patient does not respond to the Ondansetron. I like your idea about the exercise, and I would think that helps with any fatigue one may experience during this treatment. I think I will also try that, even if it means just walking in the inside hallway of my apartment building. I do have two chihuahua mixes that I love dearly, and I take them out several times a day, but it can be difficult during the winter, especially if you have bad weather. They don't even like to be out for very long. I appreciate your sharing information about your journey so far, and I will be in touch again once I start my treatment next week. Meanwhile, I hope you and your family have a lovely and safe holiday season, and by all means, stay warm.

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Thanks for your reply. I think my throat / jaw experience is due to the infusion of Oxaliplatin and not the Xeloda tablets and so hopefully you won't have this issue when you start your treatment after Christmas. It sounds like you're in good hands. Enjoy Christmas, and your chihuahuas that sound very sensible not wishing to endure cold weather. Keep in touch.

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@martin77

Thanks for your reply. I think my throat / jaw experience is due to the infusion of Oxaliplatin and not the Xeloda tablets and so hopefully you won't have this issue when you start your treatment after Christmas. It sounds like you're in good hands. Enjoy Christmas, and your chihuahuas that sound very sensible not wishing to endure cold weather. Keep in touch.

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After a bit of a grim week I'm feeling better today, just in time for Christmas! I hope you're not affected by the very cold US temperatures at present. Stay warm and Happy Christmas.

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@martin77

After a bit of a grim week I'm feeling better today, just in time for Christmas! I hope you're not affected by the very cold US temperatures at present. Stay warm and Happy Christmas.

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Hello, Merry Christmas!! I am sorry you had a bit of a tough week, but am glad you are feeling better now. Are you still getting infusions along with the Xeloda, or were you just on the Xeloda this past week? I do hope you will now not have the side effects and things will improve. I start my pills tomorrow morning, so I am a bit nervous and hoping for the best. Yes, it has been a bit cold here on certain days, but I am in the southwest, so it isn't as severe as the east coast and mid western part of the states. Hope you are staying warm and will enjoy the holidays. Will be in touch soon.

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Diagnosed with colon cancer after bowel operation for obstruction.stage 3,2 lymph nodes out out of 17..started chemo in sept.22, just finished session 8. I'm 82 retired Army, every 14days I undergo Fluorouracil iv followed by pegfilgrastim injection.
My side effects has been minor dirrea,which is easily checked with a pill of Imodium ad. No pain,no nausea.severe loss of taste, my mouth is not sore,but feels like but into a green persimmon. I have 4 more sessions. I wish you luck, I do feel that your outcome will be favorable.

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@leed2022

Hello, Merry Christmas!! I am sorry you had a bit of a tough week, but am glad you are feeling better now. Are you still getting infusions along with the Xeloda, or were you just on the Xeloda this past week? I do hope you will now not have the side effects and things will improve. I start my pills tomorrow morning, so I am a bit nervous and hoping for the best. Yes, it has been a bit cold here on certain days, but I am in the southwest, so it isn't as severe as the east coast and mid western part of the states. Hope you are staying warm and will enjoy the holidays. Will be in touch soon.

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Thanks for your Christmas greetings. I hope you had a good day and that your first day of Xeloda has gone well. Have you experienced tingly fingers yet? That's an easy side effect to live with but I sometimes wear thin gloves when handling cold objects. I'm finding it's a bit like riding a roller coaster - some days are great and others difficult and I've yet to discover the reason for the variances. I seem to be tolerating Xeloda quite well and so I suspect it's about finding the right diet to ensure a comfortable bowel at all times.
My treatment started with an infusion of Oxaliplatin last Thursday which lasted around 2 hours. That was easy. Since then I have been taking 3 x 500mg pills of Capecitabine (Xeloda) twice a day but the first 3 days also included steroid and anti-sickness pills which, combined, might have been the cause of the awful constipation a week ago. I've stopped taking laxatives and so it now seems to be a question of diet management. This roller coaster experience has resulted in some days, such as yesterday, when I have felt very well (5,500 steps achieved fairly easily), but not quite as good today (only 3,300 so far). Maybe it was the first red wine for weeks when a couple of grandkids visited yesterday! I hope your experience goes well and that you have no discomfort.
We have had lovely sunny weather over Christmas with temperatures of 9C / 48F at times. Good to hear you're not affected by the icy conditions elsewhere. Keep in touch.

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@martin77

Thanks for your Christmas greetings. I hope you had a good day and that your first day of Xeloda has gone well. Have you experienced tingly fingers yet? That's an easy side effect to live with but I sometimes wear thin gloves when handling cold objects. I'm finding it's a bit like riding a roller coaster - some days are great and others difficult and I've yet to discover the reason for the variances. I seem to be tolerating Xeloda quite well and so I suspect it's about finding the right diet to ensure a comfortable bowel at all times.
My treatment started with an infusion of Oxaliplatin last Thursday which lasted around 2 hours. That was easy. Since then I have been taking 3 x 500mg pills of Capecitabine (Xeloda) twice a day but the first 3 days also included steroid and anti-sickness pills which, combined, might have been the cause of the awful constipation a week ago. I've stopped taking laxatives and so it now seems to be a question of diet management. This roller coaster experience has resulted in some days, such as yesterday, when I have felt very well (5,500 steps achieved fairly easily), but not quite as good today (only 3,300 so far). Maybe it was the first red wine for weeks when a couple of grandkids visited yesterday! I hope your experience goes well and that you have no discomfort.
We have had lovely sunny weather over Christmas with temperatures of 9C / 48F at times. Good to hear you're not affected by the icy conditions elsewhere. Keep in touch.

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Hello, I have been thinking about you and wanted to wait until I had a few doses before explaining how I am feeling since I started yesterday 12/26/22 with the Xeloda. I am sorry you have been on a roller coaster and hope that your symptoms will subside and that your experience for the rest of the journey will be a positive one. It has not been quite a week for you, so it may just take a little longer for your system to settle in. I too am taking 3 of the 500mg tablets 2/day, and so far have not had any side effects. While I am tolerating it well so far, it has only been 3 doses as of this writing. I will take my 4th dose tonight and then continue tomorrow through this week and next before having a week off. I am not getting too excited at this point because it has only been two days, and not sure if things will change once I get further into the routine and the medicine has really kicked in. I will post another update by this coming weekend once I see how things go. I meet with my oncologist on January 6th for my first follow up since I last saw her after my surgery and before taking the treatment. Not sure if my routine will help, but what I do is take the Ondansetron (anti nausea medicine) under the tongue so it will dissolve while I have an empty stomach. I do this about 30 minutes prior to eating breakfast (same with dinner). Then I have my meal prepared to eat at least half of it after that 30 minutes are up, and start taking one pill at a time, slowly, with water, and then taking another bite of food. I drink hot ginger tea with my breakfast, and keep ginger chews (from the health food store) on my kitchen counter in case I need them, along with ginger ale, and even ginger snaps (haven't needed any of that yet, but it's there just in case). After the first pill, I take the second one a few minutes later, again with some food and water and sips of ginger tea. The same with the third tablet. I do this process slowly so that the 3 tablets are taken in about 8-10 minutes. I repeat this at dinner time. So far so good, but as I mentioned, I am just starting, so not sure if I will continue experiencing the same outcome over the course of the next few months. Once I finish in 6 months, I will get another CT scan, so of course there is always going to be anxiety when we are re-tested in the hopes that all goes well and nothing else shows up. Do you still have to take steroids and infusions, or was that just for the beginning? Please keep me posted on your progress, and I too will do the same by the end of the week or during the weekend. Meanwhile, I wish you the very best and pray that we both get through this ordeal as best as possible without any mishaps. Happy New Year to you and your family, and continue to stay safe and warm. Sending you positive thoughts my friend. We will get through this!

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@martin77

Thanks for your Christmas greetings. I hope you had a good day and that your first day of Xeloda has gone well. Have you experienced tingly fingers yet? That's an easy side effect to live with but I sometimes wear thin gloves when handling cold objects. I'm finding it's a bit like riding a roller coaster - some days are great and others difficult and I've yet to discover the reason for the variances. I seem to be tolerating Xeloda quite well and so I suspect it's about finding the right diet to ensure a comfortable bowel at all times.
My treatment started with an infusion of Oxaliplatin last Thursday which lasted around 2 hours. That was easy. Since then I have been taking 3 x 500mg pills of Capecitabine (Xeloda) twice a day but the first 3 days also included steroid and anti-sickness pills which, combined, might have been the cause of the awful constipation a week ago. I've stopped taking laxatives and so it now seems to be a question of diet management. This roller coaster experience has resulted in some days, such as yesterday, when I have felt very well (5,500 steps achieved fairly easily), but not quite as good today (only 3,300 so far). Maybe it was the first red wine for weeks when a couple of grandkids visited yesterday! I hope your experience goes well and that you have no discomfort.
We have had lovely sunny weather over Christmas with temperatures of 9C / 48F at times. Good to hear you're not affected by the icy conditions elsewhere. Keep in touch.

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Hello again, I am about to start my morning ritual on day 3. I did have a little constipation this morning upon wakening, and realized that I also need to do something about eating more well balanced foods to include more vegetables and fruit--especially grapes. I have gotten into a bad habit prior to the holidays with eating foods that I normally don't. Not only have I gained weight, but am also eating foods that are not good for the treatment and with just having the colon surgery. Starting today, I am going to eat more of the good things and go back to eating the fun stuff in moderation. I have heard that prune juice is also good to have around in case one has this problem. Definitely need to keep a gentle laxative on hand. I will let you know how it goes, and I do hope that you will have better success. Is next week your one week off? All the Best in the New Year!

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@leed2022

Hello again, I am about to start my morning ritual on day 3. I did have a little constipation this morning upon wakening, and realized that I also need to do something about eating more well balanced foods to include more vegetables and fruit--especially grapes. I have gotten into a bad habit prior to the holidays with eating foods that I normally don't. Not only have I gained weight, but am also eating foods that are not good for the treatment and with just having the colon surgery. Starting today, I am going to eat more of the good things and go back to eating the fun stuff in moderation. I have heard that prune juice is also good to have around in case one has this problem. Definitely need to keep a gentle laxative on hand. I will let you know how it goes, and I do hope that you will have better success. Is next week your one week off? All the Best in the New Year!

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I hope you're not too uncomfortable. Yes, I'm sure diet has such a large part to play and eating healthily will help avoid the need for even a gentle laxative. Whilst I haven't needed any for several days now my bowel continues to be irritable much of the time, despite eating lots of home grown vegetables. It needs to learn how to behave itself. I shall follow your advice and take the pills in easy steps in future instead of swallowing all 3 in rapid succession (mainly to get the process over with!). Thanks for the tip, and for the ginger recommendation.
Best of luck over the next few days. It's good to compare experiences.

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I to was diagnosed with stage 3 colon cancer with 2 lymph nodes positive after bowel resection surgery. After my initial oncology consult I was scared also because of the picture they painted.after 8 chemo sessions my side effects r minimum. Taste buds,brain fog, some diarrhea,that's easy checked. Anxiety that I brought 2 the table. No pain,,no fever,no hair loss,. nail color change (some)

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