1. < Neuroendocrine Tumors (NETs)
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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.

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Turkey, Volunteer Mentor | @tomrennie | Jan 21 9:26am
In reply to @knelson626 "@tomrennie Sadly, I don't remember the ne of the mutation, but it is a known, rare..." + (show)
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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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@knelson626 Please let me know how the genetic mutation test goes? This is new to me. I am learning through your experience. Thank you.

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mar | @mnob | Jan 21 9:52am
In reply to @tomrennie "@mnob Thank you for teaching me that. I really appreciate it. What ails you that requires..." + (show)
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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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@tomrennie PNET with metastasis to the liver. Found when I had a CT scan for another medical issue.

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Turkey, Volunteer Mentor | @tomrennie | Jan 21 10:15am
In reply to @mnob "@tomrennie PNET with metastasis to the liver. Found when I had a CT scan for another..." + (show)
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@tomrennie PNET with metastasis to the liver. Found when I had a CT scan for another medical issue.

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@mnob I know what that is like. I have the same thing. How long ago were you diagnosed?

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djchambers | @djchambers | Jan 21 12:52pm

About two years ago. I had surgery to remove one tumor and some lymph nodes.

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mar | @mnob | Jan 21 2:25pm
In reply to @tomrennie "@mnob I know what that is like. I have the same thing. How long ago were..." + (show)
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@mnob I know what that is like. I have the same thing. How long ago were you diagnosed?

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@tomrennie I was diagnosed in January of 2024. Unfortunately, since I had very few symptoms the tumor in my liver is quite large. I'm on my third oncologist as the first two said I only required the Lanreotide injections, yet the tumor continued to grow. Finally the third oncologist couldn't understand why they hadn't had me on CapTem also. What a learning experience this has been.

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Turkey, Volunteer Mentor | @tomrennie | Jan 21 8:16pm
In reply to @mnob "@tomrennie I was diagnosed in January of 2024. Unfortunately, since I had very few symptoms the..." + (show)
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@tomrennie I was diagnosed in January of 2024. Unfortunately, since I had very few symptoms the tumor in my liver is quite large. I'm on my third oncologist as the first two said I only required the Lanreotide injections, yet the tumor continued to grow. Finally the third oncologist couldn't understand why they hadn't had me on CapTem also. What a learning experience this has been.

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@mnob Unfortunately, we learn some things the hard way as we go. Were your first two oncologists NET Specialists?

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mar | @mnob | Jan 22 10:49am
In reply to @tomrennie "@mnob Unfortunately, we learn some things the hard way as we go. Were your first two..." + (show)
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@mnob Unfortunately, we learn some things the hard way as we go. Were your first two oncologists NET Specialists?

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@tomrennie The first oncologist had knowledge but wasn't a specialist. The second oncologist was a specialist and was listed as one of the top oncologist in Michigan for neuroendocrine cancers.

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Turkey, Volunteer Mentor | @tomrennie | Jan 23 9:28am
In reply to @mnob "@tomrennie The first oncologist had knowledge but wasn't a specialist. The second oncologist was a specialist..." + (show)
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@tomrennie The first oncologist had knowledge but wasn't a specialist. The second oncologist was a specialist and was listed as one of the top oncologist in Michigan for neuroendocrine cancers.

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@mnob Surprising at times isn't it? Just like any profession, all doctors are not created equal. If you find one that works for you, with you, with the knowledge and experience that you need, and explains things to you in a way that you understand, that doctor is a keeper in my book. It seems like you have one like that now. You agree?

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mar | @mnob | 6 days ago
In reply to @tomrennie "@mnob Surprising at times isn't it? Just like any profession, all doctors are not created equal...." + (show)
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@mnob Surprising at times isn't it? Just like any profession, all doctors are not created equal. If you find one that works for you, with you, with the knowledge and experience that you need, and explains things to you in a way that you understand, that doctor is a keeper in my book. It seems like you have one like that now. You agree?

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@tomrennie I hope so. I feel like I'm running out of options where I live. I just started with the third oncologist in mid December so it's too early to tell.

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Turkey, Volunteer Mentor | @tomrennie | 5 days ago
In reply to @mnob "@tomrennie I hope so. I feel like I'm running out of options where I live. I..." + (show)
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@tomrennie I hope so. I feel like I'm running out of options where I live. I just started with the third oncologist in mid December so it's too early to tell.

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@mnob you are still building that relationship then. It can take a little time. It seems to be going ok so far. You agree?

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