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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I just finished my second cycle of Capecitabine earlier this week. For most of the second cycle I was fine physically until it came down to the last three days and then I felt awful physically and tired. I know part of the way I felt was due to vomiting almost on a daily basis. I am still a little weak but started to notice yesterday evening I was getting better. The Doctors have been trying to get my vomiting under control so we will see what happens going forward. I know I’ve lost almost 15 pounds in the past two weeks.

During the first cycle I felt much more fatigued after the first week on the medication. I was vomiting but not as much as I have recently the past couple weeks. During the second cycle I felt stronger over all and thought my body got used to the medication and then all of a sudden towards the end of the cycle I hit a brick wall. I currently don’t have much of an appetite however, prior to hitting the brick wall my appetite was fine but I just ate smaller portions.

I guess each cycle will I will feel different but I will enjoy the next week and a half of not having to take it.

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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 Has the doctor mentioned DPD testing for your mother before recommending a dosage? I had this testing done and it showed that I was a intermediate metabolizer, meaning my body breaks down Xeloda at a slower rate. My doctor has me on a low dosage, 1000mg daily, 500mg in the morning, and 500mg in the evening. There are three categories of how well a body metabolizes Xeloda, normal, intermediate and poor. I would ask the doctor about this testing. Below is information about this testing.
DPD (dihydropyrimidine dehydrogenase) testing is a genetic test that checks for variants in the DPYD gene prior to starting Xeloda (capecitabine) chemotherapy. It is a critical safety measure, as individuals with DPD deficiency cannot efficiently break down the drug, which can lead to severe or fatal toxic side effects.

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Profile picture for mar @mnob

@pizmo Has the doctor mentioned DPD testing for your mother before recommending a dosage? I had this testing done and it showed that I was a intermediate metabolizer, meaning my body breaks down Xeloda at a slower rate. My doctor has me on a low dosage, 1000mg daily, 500mg in the morning, and 500mg in the evening. There are three categories of how well a body metabolizes Xeloda, normal, intermediate and poor. I would ask the doctor about this testing. Below is information about this testing.
DPD (dihydropyrimidine dehydrogenase) testing is a genetic test that checks for variants in the DPYD gene prior to starting Xeloda (capecitabine) chemotherapy. It is a critical safety measure, as individuals with DPD deficiency cannot efficiently break down the drug, which can lead to severe or fatal toxic side effects.

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@mnob yes, the oncologist said he tested and she's okay to metabolize. She just found a lump in armpit so she's getting a biopsy so meds on hold. She has metastisized kidney cancer that had gone to chest wall but it's indolent (very slow-growing). She's had breast cancer too. When she was in her 50s she did HRT and all the cancers she had are estrogen-driven. If it's kidney cancer, they may want to treat for both? We'll get second opinion to see what a big hospital suggests too. Just waiting now. Thanks for the replies everyone!

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Profile picture for Jennifer @pizmo

@mnob yes, the oncologist said he tested and she's okay to metabolize. She just found a lump in armpit so she's getting a biopsy so meds on hold. She has metastisized kidney cancer that had gone to chest wall but it's indolent (very slow-growing). She's had breast cancer too. When she was in her 50s she did HRT and all the cancers she had are estrogen-driven. If it's kidney cancer, they may want to treat for both? We'll get second opinion to see what a big hospital suggests too. Just waiting now. Thanks for the replies everyone!

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@pizmo, did your mother get the biopsy? What are next steps?

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Profile picture for Colleen Young, Connect Director @colleenyoung

@pizmo, did your mother get the biopsy? What are next steps?

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@colleenyoung
She's scheduled for biopsy on Friday since that was closest appt. The second opinion doctor said she'd put her on 1000mg a day not 3600 mg a day like the other doctor. She said this week my mom is in the 10 week window and she needs to decide this week if she'll take it. I'm a bit confused because the other doc said 12 weeks but why is that window so important? And id like to know what the lumps are before her getting on the Capecitabine. She has metastisized kidney cancer but it is so slow growing. She also found out there is a test called segetrerra that she could have taken but the window has passed. Has anyone taken this and is there a small window to take it? Thanks for all your concerns and comments.

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Profile picture for Colleen Young, Connect Director @colleenyoung

@pizmo, did your mother get the biopsy? What are next steps?

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@colleenyoung Next step is to decide to take or not this week due to window of efficacy closing. Does anyone know an elderly person that has taken this med and done okay?

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Profile picture for Jennifer @pizmo

@colleenyoung
She's scheduled for biopsy on Friday since that was closest appt. The second opinion doctor said she'd put her on 1000mg a day not 3600 mg a day like the other doctor. She said this week my mom is in the 10 week window and she needs to decide this week if she'll take it. I'm a bit confused because the other doc said 12 weeks but why is that window so important? And id like to know what the lumps are before her getting on the Capecitabine. She has metastisized kidney cancer but it is so slow growing. She also found out there is a test called segetrerra that she could have taken but the window has passed. Has anyone taken this and is there a small window to take it? Thanks for all your concerns and comments.

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@pizmo, what did you decide? How is your mom doing?

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Profile picture for Jennifer @pizmo

@colleenyoung Next step is to decide to take or not this week due to window of efficacy closing. Does anyone know an elderly person that has taken this med and done okay?

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@pizmo How is your mother doing?

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Profile picture for Colleen Young, Connect Director @colleenyoung

@pizmo, did your mother get the biopsy? What are next steps?

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@colleenyoung
Got biopsy and it's kidney cancer so she's going to hold off on doing chemo and focus on immunotherapy for the kidney.

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Profile picture for Jennifer @pizmo

@colleenyoung Next step is to decide to take or not this week due to window of efficacy closing. Does anyone know an elderly person that has taken this med and done okay?

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@pizmo hi Jennifer , yes Capecitabine is tough and I’m 68 and was on a daily dose of 1250mg morn and night . This was a reduced dose due to issues with my feet . It does have lots of symptoms, nausea ( controlled) fatigue which was exhausting, hand and feet peeling , diarrhoea ( controlled but very carefully ) & constipation ( I used licorish) instead of meds .. it worked .
But if it’s going to help your mum it might be worth it and as long as she has support ie to make the bed and mow the lawns she can do it cheers Tracey from Australia

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