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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@canfriend

I have been on capecitabine for 45 days during radiation and now , since surgery on a 6 sessions (2 weeks on 1 week off) of the drug.

I have had 5 gout attacks while on this. Anybody else have this side effect??

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I'm about to start my third cycle of capecitabine / Xeloda (also 2 weeks on, 1 week off) but no gout yet thankfully. Sounds very unpleasant and I hope you find a cure.

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@eom

I am still looking for feedback about PELVIC FLOOR THERAPY if anybody has had any experience with it.

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I did 10 weeks of therapy (once a week) This was several months after radiation and chemo for anal cancer. Sometimes I think it helped. Other times I question whether or not the radiation caused damage to the pelvic floor. I have 4-5 bowel movements each morning. Drs only suggest using metamucil. Lately it was suggested that I take immodium. That didn't seem to make much of a difference. I did therapy for both urinary and bowel. I wish you well.

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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, 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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@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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I’m a Colon Cancer Stage 3C survivor for 3 years, 2 months. From day 1 of treatment you must call yourself a cancer survivor & believe it. Everyday get up & fight. Allow others to help you in anyways that they can. Don’t hesitate to call your oncologist anytime of the day or night if you’re in pain or feel really sick. If your oncologist tells you to go to the ER please ask him/her if they’ll call to let the ER know that you’re on your way. If you’re home alone call 911 & let them take you if there’s nobody who can take you. Let friends &/or family members take you to doctors appointments & chemo. Let family & friends know what foods you can tolerate & accept their offers to bring meals to you. Allow others to provide housekeeping or hire a housekeeper because you need to use all your energy to fight the cancer. Listen to your body & do what it needs you to do. Rest when your body needs it. Learn & practice self relaxation &/or guided imagery. Doing so will help control pain & help you to relax & fall asleep. I wish you a full recovery. Once chemo is finished it takes a long time to recover from the chemo so be patient with yourself & your body. I still don’t feel like I did before I got such with colon cancer. I don’t have the same level of energy & my body is not tolerating temperature extremes. My ascending colon & the last 12 inches of my colon were removed & reconnected. I still have a lot of diarrhea. I’ve had Crohn’s since 1985 so it’s hard for me to know if the diarrhea is from the surgery, chemo or Crohn’s. The chemo I took was Folfox. Praying for you. I had many people praying for me & kept them updated via Facebook & sent prayer requests on a regular basis. The chemo was very hard on my liver & my oncologist told me that she thought for sure I would die twice. I would highly recommend my oncologist, Dr. Korie Flippo, Plano, TX, to anybody who has cancer. She regularly visited me in the hospital late at night & I truly believe that she saved my life. All of her staff were truly awesome & always so sweet & nice & always had smiles.

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@canfriend

I have been on capecitabine for 45 days during radiation and now , since surgery on a 6 sessions (2 weeks on 1 week off) of the drug.

I have had 5 gout attacks while on this. Anybody else have this side effect??

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@canfriend, I moved your question about capecitabine (Xeloda) and gout to this existing discussion:
- Xeloda for colon cancer - Scared about side effects and need support https://connect.mayoclinic.org/discussion/xeloda-for-colon-cancer-scared-about-side-effects-and-need-support/

I did this to connect you with @leed2022 @klh1214 @pcallier @dwarren69 @cnso @philly318 @samuelg1950 @cpchef as well as @martin77. Not sure if anyone has experienced gout.

Canfriend, did you have inflammatory arthritis or issues with gout before chemo? What suggestions has your cancer team made to manage the gout or, better yet, prevent the attacks?

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@colleenyoung

@canfriend, I moved your question about capecitabine (Xeloda) and gout to this existing discussion:
- Xeloda for colon cancer - Scared about side effects and need support https://connect.mayoclinic.org/discussion/xeloda-for-colon-cancer-scared-about-side-effects-and-need-support/

I did this to connect you with @leed2022 @klh1214 @pcallier @dwarren69 @cnso @philly318 @samuelg1950 @cpchef as well as @martin77. Not sure if anyone has experienced gout.

Canfriend, did you have inflammatory arthritis or issues with gout before chemo? What suggestions has your cancer team made to manage the gout or, better yet, prevent the attacks?

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@canfriend I am now in my 3rd cycle of taking capectabine (14 days on and 7 days off), and the only side effect I have had is a bit of constipation toward the 2nd week of the 1st cycle, but since then I have been fine. I just am very careful as to what I eat during the 14 days that I take the medication. I had the surgery prior to taking the chemo medication, and have not had radiation or any other treatment. I am supposed to take this medication for a total of 6 months (8 cycles), so not sure if I will experience any other effects in the coming weeks. I have a problem with sciatica, which has been ongoing prior to my diagnosis, and sometimes I do experience a strong tingling sensation in my legs and toes associated with that, especially while in bed, and have to put my feet on the floor for a few minutes for it to go away. It is nothing like what you are experiencing. I have autoimmune issues, including osteoarthritis, but all of that has been prior to my diagnosis and not associated with the cancer. With that my joints do ache, especially in the colder and damp weather or when I physically overdo it. My medical team, especially my oncologist, said that it is possible for one to get neuropathy in their hands/fingers, but not sure if toes would also be included. I agree with @colleenyoung that you should discuss your issues with your oncologist and chemo nurse to learn more about this. It may not be associated with the capecitabine, but rather with the radiation or other treatments you may be getting. You may also want to discuss this with the surgeon to see if he or she has any insights to offer. I will keep you in my prayers and hope you get some resolution to this soon. Best of luck to you, and please keep us posted.

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Prayers for you all in this journey! Sounds like I am on a similar protocl, 3 week cycles, 4 of them total. Read a paper that says not much difference in outcome between 3 or 6 months, so check with your doctors on that! Stage 2, already had surgery to remove the tumor. I have family during the first 2 rounds, but then will be on my own as well. Find a good Naturopathic Oncologist and do some pre-chemo protocols that will help you lesson the effects. Walk or other exercise every day if you can. Oxygen flow is so important. I start tomorrow, so the unknown of how I'll react has been unsettling. Be positive, Be thankful, Be persistent in doing the very best for yourself that you can! Again, prayers for all in this journey.....

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@tmscruffy

Prayers for you all in this journey! Sounds like I am on a similar protocl, 3 week cycles, 4 of them total. Read a paper that says not much difference in outcome between 3 or 6 months, so check with your doctors on that! Stage 2, already had surgery to remove the tumor. I have family during the first 2 rounds, but then will be on my own as well. Find a good Naturopathic Oncologist and do some pre-chemo protocols that will help you lesson the effects. Walk or other exercise every day if you can. Oxygen flow is so important. I start tomorrow, so the unknown of how I'll react has been unsettling. Be positive, Be thankful, Be persistent in doing the very best for yourself that you can! Again, prayers for all in this journey.....

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Are you on Oxaliplatin too? I start with an infusion of this, then Xeloda (Capecitabine) for 2 weeks, then a week off. I'm nearly 75% through a 3 month course. The pattern so far has been a tough first week, a much easier second and an almost normal third (like now). I couldn't agree more that lots of exercise, if you feel up for it, is so important - 6,800 steps yesterday + work in my vegetable garden!
For more info see My Journey.

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I took Xeloda two times a day for six weeks. My dosage was two 500 mg tabs daily plus 8b150mg daily. I took them 12 hours apart after a meal.
I was also having radiation at the same time. I have anal cancer. My last treatment was Dec 6, 2022
I tolerated the chemo very well. I was tired and not very hungry. My hair is thinning. Certain foods tasted horrible to me. I’ve had some joint pain. My worst issues were with the radiation. The burns in my pelvic area were beyond painful.
I will have a CAT scan on March 6 to see if the treatment worked. I’m trying to be optimistic. Sometimes it’s not so easy.
I’d love to hear from anyone about their journey with anal cancer.

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