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 rb991 @rb991

First cycle completed. 3 more to go.

@tomrennie The numbness is a lot better and is only on the back of palm where the canola was inserted for the IV drug. The nausea happens but doesn't bother her too much now.
Yes we started a medicine for nausea specifically and that helped.
Overall, she is doing better.

Let's hope she gets stronger before we start the next cycle.

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@rb991 That's great. Capecitabine can take some getting used to. I have been on it for 3.5 years. What IV drug was she given?

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@rb991 That's great. Capecitabine can take some getting used to. I have been on it for 3.5 years. What IV drug was she given?

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@tomrennie If I remember the name correctly, it was Oxaliplatin.
She's undergoing a treatment for colorectal polyps.

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Profile picture for rb991 @rb991

@tomrennie If I remember the name correctly, it was Oxaliplatin.
She's undergoing a treatment for colorectal polyps.

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@rb991 Gotcha. Is the nausea medicine zofran or something else? Different types of cancer can have different capecitabine regimens. For example, I have pancreatic cancer. I take capecitabine two weeks on and two weeks off. How many weeks is a cycle for your mom? How many weeks off? She has to take it for four cycles? They all make a difference, when it come to potential side effects.

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@rb991 Gotcha. Is the nausea medicine zofran or something else? Different types of cancer can have different capecitabine regimens. For example, I have pancreatic cancer. I take capecitabine two weeks on and two weeks off. How many weeks is a cycle for your mom? How many weeks off? She has to take it for four cycles? They all make a difference, when it come to potential side effects.

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@tomrennie For nausea its perinorm + emset.
Her chemo cycles is 2 weeks on + 1 week off. In total she'll be getting 4 such cycles.
May I ask why you have been on the capec for so long? How are you doing now?

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Hi @denise134 and @rb991

I had severe side effects on capcetamine.

My oncologist switched me from 2 weeks on/1 off at a similar dose as denise134, to 1 week on/1 week at 1000mg.

Then we stretched treatment out for a year instead of 6 months.

It made a big difference and I was able to finish the treatment.

This was after several other chemos and radiation and such, so if capcetamine is your only line of defense I can see the docs not wanting to reduce too much, but worth an ask.

Hope this helps, hugs to you both.

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Profile picture for seathink @seathink

Hi @denise134 and @rb991

I had severe side effects on capcetamine.

My oncologist switched me from 2 weeks on/1 off at a similar dose as denise134, to 1 week on/1 week at 1000mg.

Then we stretched treatment out for a year instead of 6 months.

It made a big difference and I was able to finish the treatment.

This was after several other chemos and radiation and such, so if capcetamine is your only line of defense I can see the docs not wanting to reduce too much, but worth an ask.

Hope this helps, hugs to you both.

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I should add that this was not a treatment for Stage 4; I had Stage 3B triple negative breast cancer... but I imagine if you are asking for for metastatic it's probably better to have lower doses than have to quit treatment altogether.

God bless!

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Profile picture for seathink @seathink

I should add that this was not a treatment for Stage 4; I had Stage 3B triple negative breast cancer... but I imagine if you are asking for for metastatic it's probably better to have lower doses than have to quit treatment altogether.

God bless!

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@seathink
I agree the high doses side affects are horrible

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Profile picture for rb991 @rb991

@tomrennie For nausea its perinorm + emset.
Her chemo cycles is 2 weeks on + 1 week off. In total she'll be getting 4 such cycles.
May I ask why you have been on the capec for so long? How are you doing now?

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@rb991 So those nausea meds are working? I have never heard of them. Thanks.

The shorter off time between cycles, from what I have experienced and learned, would pose more challenges over time. For four weeks, I hope that it doesn't make a difference. Be alert for dry skin especially on the palms of her hands and bottom of her feet. I suggest applying skin moisturizer to both, and any dry skin areas, to avoid excessive skin dryness. She might also get mouth sores. Keeping her teeth and gums as clean as possible usually helps. She already has experienced neuropathy on her fingers. I live with it on my hands and legs below my knees. Compression socks and gloves really help. My oncologist has told me that capecitabine typically makes one feel "tired and crappy". I can confirm that statement. She will need extra rest. Plan for it. She also might get body aches and pains similar to flu like symptoms. Extra rest has really helped me with them. They are the main side effects that come to mind. Let me know if you have any questions.

I have a rare type of pancreatic cancer, neuroendocrine tumors... NETs for short, that has spread to my liver and bones. Because it spread so much, chemo was my best option. For about first year, I took capecitabine with another chemo called temozolomide. I started off with 2500mg daily of capecitabine. About six months in, my daily capecitabine dosage was reduced to 2000mg. The combination of the two chemos was beating me up. Like at @seathink suggested, the reduction in the capecitabine daily dose really helped. I am still on 2000mg daily now.

Let us know, if you have any more questions. We all learn from each other.

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@rb991 So those nausea meds are working? I have never heard of them. Thanks.

The shorter off time between cycles, from what I have experienced and learned, would pose more challenges over time. For four weeks, I hope that it doesn't make a difference. Be alert for dry skin especially on the palms of her hands and bottom of her feet. I suggest applying skin moisturizer to both, and any dry skin areas, to avoid excessive skin dryness. She might also get mouth sores. Keeping her teeth and gums as clean as possible usually helps. She already has experienced neuropathy on her fingers. I live with it on my hands and legs below my knees. Compression socks and gloves really help. My oncologist has told me that capecitabine typically makes one feel "tired and crappy". I can confirm that statement. She will need extra rest. Plan for it. She also might get body aches and pains similar to flu like symptoms. Extra rest has really helped me with them. They are the main side effects that come to mind. Let me know if you have any questions.

I have a rare type of pancreatic cancer, neuroendocrine tumors... NETs for short, that has spread to my liver and bones. Because it spread so much, chemo was my best option. For about first year, I took capecitabine with another chemo called temozolomide. I started off with 2500mg daily of capecitabine. About six months in, my daily capecitabine dosage was reduced to 2000mg. The combination of the two chemos was beating me up. Like at @seathink suggested, the reduction in the capecitabine daily dose really helped. I am still on 2000mg daily now.

Let us know, if you have any more questions. We all learn from each other.

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@tomrennie My mom's dose for capec is 2500 mg currently and as per vitals, doctors said, she is doing okay. I guess, they'll reduce in the upcoming cycles, in case it gets too much.

Also, thanks for the warning me about the dry skin. I am trying my best rub creams every night on her arms and foot. (Cetaphil)
Should I be applying those more frequently throughout the day?

And would CIPN symptoms go away after treatment?

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Profile picture for rb991 @rb991

@tomrennie My mom's dose for capec is 2500 mg currently and as per vitals, doctors said, she is doing okay. I guess, they'll reduce in the upcoming cycles, in case it gets too much.

Also, thanks for the warning me about the dry skin. I am trying my best rub creams every night on her arms and foot. (Cetaphil)
Should I be applying those more frequently throughout the day?

And would CIPN symptoms go away after treatment?

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@rb991 In my opinion, she sounds ok on the 2500mg. Most treatment has some sort of side effects. Hopefully, she will get through the four cycles without anything additional and will never have to worry about it again.

I apply cream after I shower in the morning and around 8ish at night. If her skin isn't dry, you should be fine with just that. If it still gets dry, then apply more. For me, it has been harder to fix than keep from happening. Walking on feet with dry cracked skin hurts. So, I personally am overly cautious about it.

In theory, the CIPN symptoms should go away. I have learned from others here that the length of time varies from person to person. It would be hard to put a specific time table on it. I personally don't know.

Any other concerns? Things can change a bit with each cycle and everyone's reaction to capecitabine is typically unique. Please ask, if she encounters anything different. OK?

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