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.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY
@leed2022

Well, that was my doctor's idea for me to start after Christmas. She may have felt I would be able to enjoy the holidays better, but in my opinion, it just prolongs the worry and anxiety. Maybe you can ask your doctor if you can start the week after Christmas if you prefer to do so. Yes, please let me know how you do after the first few days, as I'm sure it will take a little time to settle in with your routine, and to get your body used to the medication. Do you have a good support system at home with family and/or friends? That will help.

Jump to this post

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.

REPLY
@martin77

Thanks. I'll let you know how I get on. We will have the same pills although I don't know yet the strength / number to take.
The difference is my treatment starts with an infusion of Oxaliplatin followed by the first Xeloda pill(s) the same evening. The following day should be an interesting one!
Quite envious that you're starting after Christmas and not before. Best wishes.

Jump to this post

Well, that was my doctor's idea for me to start after Christmas. She may have felt I would be able to enjoy the holidays better, but in my opinion, it just prolongs the worry and anxiety. Maybe you can ask your doctor if you can start the week after Christmas if you prefer to do so. Yes, please let me know how you do after the first few days, as I'm sure it will take a little time to settle in with your routine, and to get your body used to the medication. Do you have a good support system at home with family and/or friends? That will help.

REPLY
@leed2022

I will be thinking about you and wishing you well. Please keep me posted. I am not sure of the exact date when I start the Xeloda but it is supposed to be right after Christmas. I believe it will be 1,650mg 2/day for 14 days, then off for 7 days. This is considered one cycle, and I have to follow this for 8 cycles. Since the pills come in 500mg and 150 mg, I am guessing that I will have to take 3 of the 500mg and 1 of the 150mg 2/day. Once I finish all the cycles, I will get a CT scan again to see how things are going. It's an emotional roller coaster ride to say the least. Take care!

Jump to this post

Thanks. I'll let you know how I get on. We will have the same pills although I don't know yet the strength / number to take.
The difference is my treatment starts with an infusion of Oxaliplatin followed by the first Xeloda pill(s) the same evening. The following day should be an interesting one!
Quite envious that you're starting after Christmas and not before. Best wishes.

REPLY
@martin77

Hello. It seems we will be having slightly different treatments but look forward to comparing experiences. I start with an infusion on 15 December then pills twice a day for 15 days, then 7 days holiday and then the whole process starts again for a total period I understand of around 3 months.

Jump to this post

I will be thinking about you and wishing you well. Please keep me posted. I am not sure of the exact date when I start the Xeloda but it is supposed to be right after Christmas. I believe it will be 1,650mg 2/day for 14 days, then off for 7 days. This is considered one cycle, and I have to follow this for 8 cycles. Since the pills come in 500mg and 150 mg, I am guessing that I will have to take 3 of the 500mg and 1 of the 150mg 2/day. Once I finish all the cycles, I will get a CT scan again to see how things are going. It's an emotional roller coaster ride to say the least. Take care!

REPLY
@leed2022

Hello, thanks so much for reaching out. The drug I will be starting after the holidays is Xeloda (brand name), and the generic name is Capecitabine. I don't have all the details just yet because they are waiting for the insurance company to approve it, which I know they will. I just read so many comments in various sites about how some people did not have any side effects while others had problems with nausea, vomiting, diarrhea and fatigue. I realize everyone is different, but it sure is scary having to go through this like so many of us. I would love to compare notes as we go along. When will you actually start the treatment? Will you be taking the pill? I believe my dose is supposed to be 1,650mg 2/day. The pills come in 500mg and 150mg, so I am guessing that means (3) 500mg tablets plus (1) 150mg tablet 2/day. Let's definitely keep in touch.

Jump to this post

Hello. It seems we will be having slightly different treatments but look forward to comparing experiences. I start with an infusion on 15 December then pills twice a day for 15 days, then 7 days holiday and then the whole process starts again for a total period I understand of around 3 months.

REPLY
@colleenyoung

Welcome @leed2022. I'm glad you've connected with @martin77.
Xeloda is the brand name for capecitabine and Xelox is a chemo combination of capecitabine and oxaliplatin.

@pgf @mallika58 @wifemom3 @canfriend may have Xeloda and colorectal cancer experiences to share.

Martin, fellow members @lunaluna10 @firepowr and @robertkerr have had Xelox, the capecitabine and oxaliplatin combo.

Jump to this post

Hi Colleen. Many thanks for explaining the differences between Xeloda and Xelox, and for linking me to others who have had Xelox.

REPLY
Please sign in or register to post a reply.