Anyone taking Capecitabine Chemo for bile duct cancer?

Posted by sunflower88 @sunflower88, Aug 18, 2024

My spouse recently diagnosed with Bile Duct Cancer, he had the left lobe of his liver removed due to malignant lesion/tumor on his liver on 6/24/24. He started taking chemo drug Capecitabine 2000 mg twice a day. No bad side effects yet. Is anyone else taking the same chemo?

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@denise134

Sunflower88
Thanks for reply - I'm on same regimen but having trouble side affects so not sure if I will still be on a different dose or new treatment and I don't see doc till 16th of Jan then see results DPD gene too.
Happy you are doing well with pills. Keep in touch

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I hope all goes well with you too. His blood work did not look good. Too many red blood cells, he may be anemic or it is the chemo that is showing way too many High levels. He goes back on January 23 for more bloodwork, MRI, and CT of his chest.

Keep in touch.

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@sunflower88

Hi Denise, he takes chemo twice a day, so 6 chemo pills (each one is 500 mg) a day for two weeks so that is 84 chemo pills, then 1 week off of chemo. He will be done with chemo mid- March, 2025.

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Sunflower88
Thanks for reply - I'm on same regimen but having trouble side affects so not sure if I will still be on a different dose or new treatment and I don't see doc till 16th of Jan then see results DPD gene too.
Happy you are doing well with pills. Keep in touch

REPLY
@denise134

Sunflower88
Thx for reply - was wondering how many does your husband took - supposed to take 8 doses of 14 days on and 7 days off pill
I could only tolerate 3 doses barely - biomarkers were 24 but now 57 - I also was stage 1 and no spread according to pathology after surgery

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Hi Denise, he takes chemo twice a day, so 6 chemo pills (each one is 500 mg) a day for two weeks so that is 84 chemo pills, then 1 week off of chemo. He will be done with chemo mid- March, 2025.

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Sunflower88
Thx for reply - was wondering how many does your husband took - supposed to take 8 doses of 14 days on and 7 days off pill
I could only tolerate 3 doses barely - biomarkers were 24 but now 57 - I also was stage 1 and no spread according to pathology after surgery

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@denise134

Had left lobe liver removed Sept 6, no symptoms before found on pelvic scan. Surgery went well but month later I started capecitabine 1,950 mg twice daily for 13 days and I quit - had severe mucositis bleeding gums and nose plus sick in stomach no appetite then diarrhea and blisters scabs on chest so- so they reduced dosage 1500 twice a day seemed a little better then got sinus infection went on strong antibiotic so off pills 18 days them did third dose - mucositis milder then hands swollen feet peeling and diarrhea from hell - lost all control and couldn't walk for 3 days and Imodium didn't help much so now oncologist testing me for DPD gene and waiting to see if I can't tolerate anymore - maybe new treatment?? Supposed to be well tolerated pill so anyone else have severe issues early on with capecitabine??

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Hi Denise,
My husband had his left lobe of his liver removed on 6/24/24, started taking capecitabine 2000 mg twice a day in August, 2024. His feet peeled and some of his fingers as well. Then he got severe diarrhea like 7-10 times a day. Lost 18 lbs in less than 3 weeks. Had to go to Mayo ER for IV hydration with potassium. He was taking Imodium, and pepto bismol, no relief. His team of doctors and PA had him stop oral chemo for a month. They finally prescribed Loperamide for the diarrhea. Slowly it helped. When he started back on the oral chemo they reduced it to 1500 mg twice a day. He is able to tolerate the lower dosage much better. He still has diarrhea occasionally but nothing like before. He was on the BRAT diet when it was bad, he also had 2 more IV hydrations with potassium (3 total). He will be on oral chemo capecitabine for a total of 6 months. With 2 weeks on chemo, followed by 1 week off of chemo for 6 months. He has 2 months left. Bile duct cancer has a high recurrence rate. Blood work every 3 weeks, every 2 months he has an MRI and a CT Scan on his chest. Tumor markers are done with blood work, so far so good. Cancer has not come back yet and it was caught very early.Stage 1 \ Grade 1B. The malignant tumor on his liver was big at 6 cm.

I hope this info helps.

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Eight weeks ago I had a Y90 treatment for liver cancer tumors. My fatigue is bad. I have no strength and stamina at all. I have low grade fevers every afternoon with abdominal and shoulder pain when I move or cough. I was prepared for several weeks of this but after two months I don't see much improvement day to day.. Has anyone else had a similar experience ?

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Had left lobe liver removed Sept 6, no symptoms before found on pelvic scan. Surgery went well but month later I started capecitabine 1,950 mg twice daily for 13 days and I quit - had severe mucositis bleeding gums and nose plus sick in stomach no appetite then diarrhea and blisters scabs on chest so- so they reduced dosage 1500 twice a day seemed a little better then got sinus infection went on strong antibiotic so off pills 18 days them did third dose - mucositis milder then hands swollen feet peeling and diarrhea from hell - lost all control and couldn't walk for 3 days and Imodium didn't help much so now oncologist testing me for DPD gene and waiting to see if I can't tolerate anymore - maybe new treatment?? Supposed to be well tolerated pill so anyone else have severe issues early on with capecitabine??

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@sunflower88

Thank you and he has been using marijuana oil to smoke which has helped. He is having terrible stomach cramps and not eating due to throwing up. Appointment at Mayo on Friday for an assessment. He is taking sulfracate to try to coat his stomach. Hopefully, Mayo has some RX that can help besides the OTC.

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Wishing you the best too.

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Thank you and he has been using marijuana oil to smoke which has helped. He is having terrible stomach cramps and not eating due to throwing up. Appointment at Mayo on Friday for an assessment. He is taking sulfracate to try to coat his stomach. Hopefully, Mayo has some RX that can help besides the OTC.

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@sunflower88

You have been through so much. I hope you are cancer free now.

My husband is having side effects from the oral capecitabine that he takes twice a day, 2000 mg in AM and PM. Same routine with 2 weeks of chemo followed by 1 week no chemo for 6 months. He has only been on chemo for 6 weeks now. Side effects includes neuropathy on the heel and ball on his feet. Hurts to walk. Lives on pepto bismol daily due to stomach aches, some diarrhea. Also, drinking warm water with baking soda in it. He has had 7 MOH’s skin surgery. Taking the chemo, it is killing the skin cancer, his arms, neck, face and back covered in red spots which is skin cancer that the chemo is killing, which is a good thing. He has mostly bad days, not feeling good from the chemo. He is a trooper and will follow treatment plan on taking chemo for 6 months. Love Mayo Clinic and his team of doctors. Blood work every 3 weeks. He is scheduled on 10/23 for CT Chest and MRI on abdomen. He had liver resection (removed left lobe) due to 6 cm malignant tumor on 6/24. Amazed with surgery done laparoscopic with 2 surgeons and assisted with Da Vinci robotic that removed the left lobe. He is scheduled for the first 2 years to have both CT chest and MRI of abdomen every 2 months. ICC cancer is rare and recurrence of it is high. Mayo is on top of it. So thankful for all of the team of doctors, PA’s, entire staff at Mayo Clinic in Jax, FL.

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I am so sorry to hear what you and your husband have been through.
The good thing is that Mayo is the best and he is determined to follow the treatment despite all the side effects.
I don't know if it's wise to say but Marijuana really helped me during the height of chemo.
Helped me with my appetite and sleep while diminishing the anxiety.
I still have the same problem with my feet.
Please hold on to the treatment.
I have seen so many positive outcomes even for patients who were not given a good outlook.
Wish you the BEST

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