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

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

Profile picture for denise134 @denise134

@nancyschweitzer if you don’t mind mentioning what cancer did you have

Jump to this post

@denise134
cholangiocarcinoma
If you click on my name I have a summary on my profile.

REPLY

I have a summary on my profile if you click on my name.

REPLY

I had cholangiocarcinoma - I wish all of my posts were connected somehow. Sorry.

REPLY
Profile picture for Nancy S @nancyschweitzer

I was cancer free after surgery when I was put on Capecitabine for 4 cycles to reduce reoccurrence rate from 50% to 5%. I found the 3 months of IV chemo administered prior to surgery was more tolerable. I never had any infections. I was also put on mandatory 100mg of protein daily throughout chemo, surgery and post op chemo.
Best of luck and stay healthy!

Jump to this post

@nancyschweitzer if you don’t mind mentioning what cancer did you have

REPLY

I was cancer free after surgery when I was put on Capecitabine for 4 cycles to reduce reoccurrence rate from 50% to 5%. I found the 3 months of IV chemo administered prior to surgery was more tolerable. I never had any infections. I was also put on mandatory 100mg of protein daily throughout chemo, surgery and post op chemo.
Best of luck and stay healthy!

REPLY
Profile picture for Nancy S @nancyschweitzer

Wow, that dose is much higher than mine. I still have sensitive skin and my face will look pink like I’ve scrubbed it too hard after my shower even though I’m gentle with my skin. It takes time.
I had the right side of liver removed along with most of the bile duct and just enough remaining to attach to lower intestines. So the longest part of the incision is on my right side. MRI pics of liver before show a dying liver because of blocked bile duct with holes in it and shriveling up, new MRI 4 months after surgery show beautiful new large liver.
I have the chevron incision which is still quite thick above and below incision and feels like wearing a belt, which is tighter after meals. I’m exercising and getting flexibility back.
How do you feel and how is your scar healing?

Jump to this post

@nancyschweitzer
My incision was between my breast down to belly button
was glued and healed nicely. They wanted me on it for 6 months but really hard time with side effects so I took it for 3 months oncologist took me off of it and wanted to start with IV chemo but I was on antibiotics for 3 months afterwards with infection after infection but went into remission mostly since it was caught before I had any symptoms - very fortunate
Now had hip replacement from no blood supply AVN

REPLY

Wow, that dose is much higher than mine. I still have sensitive skin and my face will look pink like I’ve scrubbed it too hard after my shower even though I’m gentle with my skin. It takes time.
I had the right side of liver removed along with most of the bile duct and just enough remaining to attach to lower intestines. So the longest part of the incision is on my right side. MRI pics of liver before show a dying liver because of blocked bile duct with holes in it and shriveling up, new MRI 4 months after surgery show beautiful new large liver.
I have the chevron incision which is still quite thick above and below incision and feels like wearing a belt, which is tighter after meals. I’m exercising and getting flexibility back.
How do you feel and how is your scar healing?

REPLY
Profile picture for Nancy S @nancyschweitzer

@denise134
I am glad that you asked this question because after I posted I realized that I didn’t mention that but could not go back in to edit the post;

I weighed 110lbs, I was 64 years old and healthy and exercised all my life.
Oncology started me on 1650mg 2x daily. This caused severe foot issues but they kept me on that dose for two cycles with longer recovery times. I was told to take 2000mcg of B12 daily.
Then they dropped it to 1300mg and side effects were still severe.
For cycle 4 they had to drop my dose to 1000mg 2x daily and I took it for 11 days but could not take it for the full 14 days due to side effects.

Congratulations to you for being cancer free 2 years! My Liver Resection y roux was December 3, 2025 and since then I’ve been cancer free. I will have my checkup in November and hopefully December will be one year cancer free for me. Yes, bad memories and hard times for sure, but the brilliant doctors and wonderful care team always made me feel that I was in the best of hands. I’d never go anywhere else.

Jump to this post

@nancyschweitzer
I was 73 when diagnosed with cholangiocarcinoma
Weighed 125 - surgery took 1/3 left lobe liver plus gallbladder and 10 lymph node- never heard of anyone taking a dose as high as me but after 1st 14 days of 3900 they dropped it to 3000 mg and I agree side effects still bad even 3 months after I quit

REPLY
Profile picture for denise134 @denise134

@nancyschweitzer
After reading your experience with Capecitibine it brought back bad memories for me like dehydration, mouth and nose sores, blistered feet etc. You never mentioned how many mg you took and I found most people took 2500-3000 but my first dose was 3900 mg
So glad to be in remission for 2 years now

Jump to this post

@denise134
I am glad that you asked this question because after I posted I realized that I didn’t mention that but could not go back in to edit the post;

I weighed 110lbs, I was 64 years old and healthy and exercised all my life.
Oncology started me on 1650mg 2x daily. This caused severe foot issues but they kept me on that dose for two cycles with longer recovery times. I was told to take 2000mcg of B12 daily.
Then they dropped it to 1300mg and side effects were still severe.
For cycle 4 they had to drop my dose to 1000mg 2x daily and I took it for 11 days but could not take it for the full 14 days due to side effects.

Congratulations to you for being cancer free 2 years! My Liver Resection y roux was December 3, 2025 and since then I’ve been cancer free. I will have my checkup in November and hopefully December will be one year cancer free for me. Yes, bad memories and hard times for sure, but the brilliant doctors and wonderful care team always made me feel that I was in the best of hands. I’d never go anywhere else.

REPLY
Profile picture for Nancy S @nancyschweitzer

@rb991
I was on capecitabine (Xeloda) Adjuvant; post op once I was cancer free.
I finished my 4 cycles (two weeks on and 1 week off) on May 11, 2026. My painful feet blistered and were reddish purple and my husband pushed me in a wheel chair, hands dried with no fingerprints, sores in mouth so I bought sponge tooth brushes to gently try to brush my teeth. I was given a mouthwash prescription that numbed my mouth and lips and was helpful, but it has side effects of sleeping so I spit it out instead of swallowing it. Brown spots appeared, skin on hands and feet changed to dark brown, cuticles grew long but I was told not to touch them. No shaving of legs or anything that could cause tiny cuts to avoid infection.

The pain in my feet subsided soon after stopping but the peeling of feet continued for a month or two, the redness continued longer but was not problematic. Brown spots had appeared on legs, hands, arms and are almost gone now at 4 months later. I avoid the sun and use heavy sunscreen even for driving.

IMPORTANT: I went to oncology 2x per week for a bag of saline during Capecitibine because HYDRATION was key to the prior chemo treatment I was on before surgery. I believe this helped me tolerate it much better. Due to the severity of side effects I was told to stop on day 11, next cycle day 12, and take a full two week recovery before starting the next cycle. I also drank Pedialyte, lots of water, juices etc. The oncology team had an open prescription for me to get IV fluids anytime I felt I needed it, twice per week is what I felt was sufficient.

Neoadjuvant prior to surgery I had 3 months of Cisplatin and Gemcitabine, along with Immunotherapy Durvalumab every other treatment and all chemo treatments always included Anti-Nausea Meds and Steroids to help with side effects. I drank Pedialyte and lots of liquids, fresh OJ every morning because the exhaustion/lightheadedness/headache and flulike symptoms mimicked dehydration. My doctors recommended watermelon and lots of hydration.

I normally take a 5mg Valium/Diazepam before bed for insomnia and have for years, and found that immediately after chemo treatments, possibly because of the steroid, I was so shakey and took one right after chemo treatment and then again at bedtime. I don’t think I would have been able to relax or sleep without it and it calmed me when my mind would start to panic over wondering if side effects are normal and if I would live through the whole thing. It may be something that others can ask their doctor about, I only know it was right for me.

Jump to this post

@nancyschweitzer
After reading your experience with Capecitibine it brought back bad memories for me like dehydration, mouth and nose sores, blistered feet etc. You never mentioned how many mg you took and I found most people took 2500-3000 but my first dose was 3900 mg
So glad to be in remission for 2 years now

REPLY
Please sign in or register to post a reply.