Capecitabine side effects are really tough: What helps?

Posted by denise134 @denise134, Dec 20, 2024

Taking this drug finished 3rd cycle
1st 14 days was 3,900 mg day had severe mucositis with bleeding gums &scabs and bleeding nose sick stomach caused poor appetite but no nausea or vomiting - then 13th day diarrhea and blisters scabbing on chest so I quit 18 days not healed doc reduced dose 3,000 day

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Profile picture for Jennifer @pizmo

Hi there, my 90 year old mom just had colon cancer surgery in her ascending colon. They got it cleared in the colon bit after testing 4 out of 18 lymph nodes, they found cancer cells in lymph nodes and veins. According to oncologist, do nothing, 40% chance of recovery. He recommended taking Capecitabine for 14 days and 7 days off for 18 weeks. This would improve djs ce of survivor vsl from 40%to 60%.My question is can a 90 year old handle this? She's very alert and full of vigor!

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@pizmo Hi and welcome to Mayo Connect. Your question is impossible to answer. Sorry. Here's why. Capecitabine treats everyone differently. For example, I have been on capecitabine for almost four years. I take it two weeks on and two weeks off. That is my cycle. After four years, I can share this. Each cycle is different. My body tolerates it way better than it used to, but it can still be challenging. @115 and @gc4217 are currently taking capecitabine and doing radiation. Hopefully, they can share their current experiences? The daily milligram intake and the amount of time off can greatly impact the side effects. My pills come in 500mg. I take two in the morning and two at night so 2000mg daily. How many pills will she be taking daily? It is great that she is very alert and full of vigor, but how active is she after her surgery? Thanks.

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@pizmo Hi and welcome to Mayo Connect. Your question is impossible to answer. Sorry. Here's why. Capecitabine treats everyone differently. For example, I have been on capecitabine for almost four years. I take it two weeks on and two weeks off. That is my cycle. After four years, I can share this. Each cycle is different. My body tolerates it way better than it used to, but it can still be challenging. @115 and @gc4217 are currently taking capecitabine and doing radiation. Hopefully, they can share their current experiences? The daily milligram intake and the amount of time off can greatly impact the side effects. My pills come in 500mg. I take two in the morning and two at night so 2000mg daily. How many pills will she be taking daily? It is great that she is very alert and full of vigor, but how active is she after her surgery? Thanks.

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@tomrennie i agree capecitabine at lower doses may be great but for me I was miserable taking 3900mg a day for 14 days was very hard on me that even when they lowered the dose to 3000 mg day it would have been fine but side effects from first dose haunted me for weeks

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@pizmo Hi and welcome to Mayo Connect. Your question is impossible to answer. Sorry. Here's why. Capecitabine treats everyone differently. For example, I have been on capecitabine for almost four years. I take it two weeks on and two weeks off. That is my cycle. After four years, I can share this. Each cycle is different. My body tolerates it way better than it used to, but it can still be challenging. @115 and @gc4217 are currently taking capecitabine and doing radiation. Hopefully, they can share their current experiences? The daily milligram intake and the amount of time off can greatly impact the side effects. My pills come in 500mg. I take two in the morning and two at night so 2000mg daily. How many pills will she be taking daily? It is great that she is very alert and full of vigor, but how active is she after her surgery? Thanks.

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@tomrennie Hi Tom, I just finished my 6th week of Xeludo and radiation I have 2 treatments left next week. Through trial and error I’ve found that I’m lactose intolerant now so I’m taking Lactaid. It’s helped a lot.
My Drs want me to do 6 rounds of Folfox I am apprehensive.

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Profile picture for denise134 @denise134

@tomrennie i agree capecitabine at lower doses may be great but for me I was miserable taking 3900mg a day for 14 days was very hard on me that even when they lowered the dose to 3000 mg day it would have been fine but side effects from first dose haunted me for weeks

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@denise134 How are you feeling now?

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Profile picture for 115 @115

@tomrennie Hi Tom, I just finished my 6th week of Xeludo and radiation I have 2 treatments left next week. Through trial and error I’ve found that I’m lactose intolerant now so I’m taking Lactaid. It’s helped a lot.
My Drs want me to do 6 rounds of Folfox I am apprehensive.

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@115 The things that we learn about our bodies along our journeys. How would the switch to folfox benefit you?

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@denise134 How are you feeling now?

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@tomrennie after using 3000 mg I took 2 times and quit and over 1 year now on monitoring every 3 months but no cancer - just had a hip replacement now.

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@pizmo Hi and welcome to Mayo Connect. Your question is impossible to answer. Sorry. Here's why. Capecitabine treats everyone differently. For example, I have been on capecitabine for almost four years. I take it two weeks on and two weeks off. That is my cycle. After four years, I can share this. Each cycle is different. My body tolerates it way better than it used to, but it can still be challenging. @115 and @gc4217 are currently taking capecitabine and doing radiation. Hopefully, they can share their current experiences? The daily milligram intake and the amount of time off can greatly impact the side effects. My pills come in 500mg. I take two in the morning and two at night so 2000mg daily. How many pills will she be taking daily? It is great that she is very alert and full of vigor, but how active is she after her surgery? Thanks.

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@pizmo I am currently on 2300mg a day of the capecitabine plus 5 days a week radiation for a total of 6 weeks. I have 2 chemo infusions day 1 and day 29. I start my 5th week Monday. So far the only real side effects have been stomach problems and exhaustion. I try to keep active during the day and listen to my body. I drive myself right now 110miles round trip to treatments. I take Imodium every day to manage my stomach problems. I also stay hydrated and have found that is a key to feeling better for me. I also know that things can change in the next few weeks and possibly even after treatment. For now things have been ok for me. Hope things will be good for you as well.

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I am also on Xeloda. 3000 mg daily
14 days on, 7 days off. Scans soon to see if it is working. My cancer marker has been trending upward slowly from an all time low of 20.
I have had stomach issues which I seem to be able to handle if I eat very small portions throughout the day.
At the end of the two week cycle I do get some radical diarrhea! I’m trying to time the onset but it but it’s difficult. I combat it with more protein and try to add more fiber. Still-the gas pain goes to my shoulder and it is awful! That causes some sleepless nights! I’m beginning to wonder if it is due to radiation adhesions somehow.

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@pizmo Hi and welcome to Mayo Connect. Your question is impossible to answer. Sorry. Here's why. Capecitabine treats everyone differently. For example, I have been on capecitabine for almost four years. I take it two weeks on and two weeks off. That is my cycle. After four years, I can share this. Each cycle is different. My body tolerates it way better than it used to, but it can still be challenging. @115 and @gc4217 are currently taking capecitabine and doing radiation. Hopefully, they can share their current experiences? The daily milligram intake and the amount of time off can greatly impact the side effects. My pills come in 500mg. I take two in the morning and two at night so 2000mg daily. How many pills will she be taking daily? It is great that she is very alert and full of vigor, but how active is she after her surgery? Thanks.

Jump to this post

@tomrennie
Thank you! We're still waiting on the doc determining the dosage. My mom wants to just jump in and take but we're waiting for doc to decide what the actual RX is supposed to be. Sounds like too high can cause real problems. Any other stories where 90 year old had taken this med? If so at what dosage? I'm hoping it will be lower and longer but sounds like 2 weeks on a d 7 days off for 28-24 months. That seems intense for my mom.

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Profile picture for Jennifer @pizmo

@tomrennie
Thank you! We're still waiting on the doc determining the dosage. My mom wants to just jump in and take but we're waiting for doc to decide what the actual RX is supposed to be. Sounds like too high can cause real problems. Any other stories where 90 year old had taken this med? If so at what dosage? I'm hoping it will be lower and longer but sounds like 2 weeks on a d 7 days off for 28-24 months. That seems intense for my mom.

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@pizmo In my experience, age isn't always the primary factor. The general overall health, weight, and the severity of the disease of the patient are also considerations. Here is a link from Mayo's website on Capecitabine. If you scroll down, it gives you an idea of dosage recommendations. It is just a guide. I hope you find it helpful?
https://www.mayoclinic.org/drugs-supplements/capecitabine-oral-route/description/drg-20062501

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