I have reoccurrence Nets side effects of cap/tem

Posted by djchambers @djchambers, Jan 17 1:29pm

I have reoccurrence of two tumors, one in liver and one near small intestine, site of previous surgery. I’m currently in third round of cap/temo. Last cap/temo at about nine days I had severe pain in my chest. I was directed to go to the emergency room. After numerous tests they said it was Gerd and possibly esophagitis. I’ve now taken nine doses of cap and had the same experience.
Nurse practitioner said it might be caused by the tumor rather than chemo. I’m on three different meds for acid, Protonix, Pepcid, and prevacid. I’m also on a restricted diet of no gluten (celiac) dairy, coffee, chocolate citrus, tomatoes, and anything else that might cause stomach upset.

Anyone else have experience with this type of acute guard/indigestion while on Him or from neuroendocrine tumor?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

I lasted 9 days on my first round of CAP-TEM (never even started the TEM) and was told to stop due to multiple bouts daily of vomiting and diarrhea. I have been off it for 9 days and am not vomiting, but still struggle with nausea. My doctor is testing me for a genetic mutation that affects the way my body metabolizes the CAP causing it to accumulate in my body. If I have the mutation I can still do the therapy, but they will adjust the dose.

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@djchambers I have been on capecitabine for 3.5 years. I have never experienced chest pain. That's unfortunate. I was on CAPTEM for about the first year. Are you still taking them?

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Profile picture for knelson626 @knelson626

I lasted 9 days on my first round of CAP-TEM (never even started the TEM) and was told to stop due to multiple bouts daily of vomiting and diarrhea. I have been off it for 9 days and am not vomiting, but still struggle with nausea. My doctor is testing me for a genetic mutation that affects the way my body metabolizes the CAP causing it to accumulate in my body. If I have the mutation I can still do the therapy, but they will adjust the dose.

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@knelson626 What genetic mutation affects metabolizing capecitabine? I am curious. When I first started CAPTEM a few years ago, nausea, vomiting, and diarrhea were daily occurrences. It took about 6 months for my body to acclimate to the treatment and find the best support meds to minimize the side effects. Are you taking anything for the nausea, vomiting, and diarrhea?

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@knelson626 What genetic mutation affects metabolizing capecitabine? I am curious. When I first started CAPTEM a few years ago, nausea, vomiting, and diarrhea were daily occurrences. It took about 6 months for my body to acclimate to the treatment and find the best support meds to minimize the side effects. Are you taking anything for the nausea, vomiting, and diarrhea?

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@tomrennie
Sadly, I don't remember the ne of the mutation, but it is a known, rare occurrence. The docs know how to adjust the dosing accordingly.

I was on everything available for the nausea, but nothing worked. They stopped the treatment on day 9. It took over a week for me to feel better.

Also, for others suffering from frequent vomiting, my dentist just told me NOT to brush afterwards, but to rinse with water and baking soda to neutralize the acid and protect the teeth. This is especially important for anyone with receding gums.

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@knelson626 What genetic mutation affects metabolizing capecitabine? I am curious. When I first started CAPTEM a few years ago, nausea, vomiting, and diarrhea were daily occurrences. It took about 6 months for my body to acclimate to the treatment and find the best support meds to minimize the side effects. Are you taking anything for the nausea, vomiting, and diarrhea?

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@tomrennie
I don’t have significant nausea and diarrhea, except a little diarrhea on occasion. I am taking a pre-emotive nausea pill before the temo.

My problems primarily are severe heartburn., abdominal pain spasms in my colon. I also have fatigue.

My primary care dr given me a regimen for taking anti acid meds throughout the day, as well as anti-spasm med. The meds ok’d by oncologist.

Also, instead of taking temo on empty stomach as specialists at Pham suggested, oncologist told me to eat something before taking temo. And that got rid of middle of the night stomach pain after taking temp.

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@djchambers I have been on capecitabine for 3.5 years. I have never experienced chest pain. That's unfortunate. I was on CAPTEM for about the first year. Are you still taking them?

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@tomrennie
Yes. I’m hanging in here. The meds from my PCP seem to be helping with the symptoms.
Mi am a bit worried about damage to esophagus from the bad heartburn.

The nurse practitioner at oncologist off said it may be my turning causing the chest pain. I hope she’s wrong and it’s the chemo.

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That should read “my tumor” causing it.

Hard for me to type on my phone on this website. Sorry for the typos. I tried to correct but didn’t get all of them. If it’s unclear let me know please and I’ll try to correct.

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@knelson626 What genetic mutation affects metabolizing capecitabine? I am curious. When I first started CAPTEM a few years ago, nausea, vomiting, and diarrhea were daily occurrences. It took about 6 months for my body to acclimate to the treatment and find the best support meds to minimize the side effects. Are you taking anything for the nausea, vomiting, and diarrhea?

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@tomrennie The genetic mutation is called DPYD. I was tested before starting Capecitabine. The test results showed I am an intermediate metabolizer, meaning that Capecitabine is to expected to be metabilized at a level between normal and poor with an increase of toxicity. My oncologist has started me on a lower dosage of Capecitabine, one pill 500 mg in the morning, and the same dosage 12 hours later. So far the only side effect I have had is some fatigue.

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Profile picture for mar @mnob

@tomrennie The genetic mutation is called DPYD. I was tested before starting Capecitabine. The test results showed I am an intermediate metabolizer, meaning that Capecitabine is to expected to be metabilized at a level between normal and poor with an increase of toxicity. My oncologist has started me on a lower dosage of Capecitabine, one pill 500 mg in the morning, and the same dosage 12 hours later. So far the only side effect I have had is some fatigue.

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@mnob Thank you for teaching me that. I really appreciate it. What ails you that requires a capecitabine treatment?

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Profile picture for djchambers @djchambers

@tomrennie
I don’t have significant nausea and diarrhea, except a little diarrhea on occasion. I am taking a pre-emotive nausea pill before the temo.

My problems primarily are severe heartburn., abdominal pain spasms in my colon. I also have fatigue.

My primary care dr given me a regimen for taking anti acid meds throughout the day, as well as anti-spasm med. The meds ok’d by oncologist.

Also, instead of taking temo on empty stomach as specialists at Pham suggested, oncologist told me to eat something before taking temo. And that got rid of middle of the night stomach pain after taking temp.

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@djchambers What is Pham? I don't know what that is?

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