1. < Neuroendocrine Tumors (NETs)
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Neuroendocrine tumor (NET) vs neuroendocrine carcinoma (NEC)

Posted by mlveal @mlveal, May 5 11:45am

I am sad to report that my dear friend has NEC and not the NET we thought. We have met with the oncology team and she is preparing to have a port implanted so she can undergo the first round of chemotherapy on May 26. We learned that the NEC is a much more fast growing and aggressive cancer than the NET. It is, however, treatable but not curable. I will depart this support group and hope to find one pertaining to NEC (neuroendocrine carcinogen).

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

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praisegod13 | @praisegod13 | 6 days ago
In reply to @waynepa "My 59 yr old husband was diagnosed with stage IVb large cell NEC, many masses in..." + (show)
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My 59 yr old husband was diagnosed with stage IVb large cell NEC, many masses in liver and lungs, his liver is 3X a normal liver. First round of chemo went well, he has less pain and has been very active. We are at 2nd round of chemo this week. The port has been great, much better then before the port. Wishing everyone the best.

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@waynepa My wife is in similar situation except not yet in the lungs. She is about to start carboplatin/etopocide combo chemo. Is that what your husband has been taking? If so, I am glad to hear it is helping him. And your comment about the port being helpful is helpful to us as well.

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waynepa | @waynepa | 6 days ago
In reply to @praisegod13 "@waynepa My wife is in similar situation except not yet in the lungs. She is about..." + (show)
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@waynepa My wife is in similar situation except not yet in the lungs. She is about to start carboplatin/etopocide combo chemo. Is that what your husband has been taking? If so, I am glad to hear it is helping him. And your comment about the port being helpful is helpful to us as well.

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@praisegod13 Hi! yes, that is the chemo that he is receiving. He tolerated it well and it must be working because his pain was reduced after his first round of chemo and only takes pain meds to sleep at night. He started losing his hair about 2.5 weeks after his first chemo treatment. He did not have the port during his first round of chemo and he felt like a pin cushion from all the chemo, blood tests etc. The port makes each treatment and blood test less painful and so much faster, the nurses were having trouble finding a good vein. He is in the middle of round 2 of chemo, we are hopeful that the chemo continues to work and reduces his tumors even more. Wishing you the best and I hope her experience goes as well as ours.

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Turkey, Volunteer Mentor | @tomrennie | 5 days ago
In reply to @waynepa "@praisegod13 Hi! yes, that is the chemo that he is receiving. He tolerated it well and..." + (show)
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@praisegod13 Hi! yes, that is the chemo that he is receiving. He tolerated it well and it must be working because his pain was reduced after his first round of chemo and only takes pain meds to sleep at night. He started losing his hair about 2.5 weeks after his first chemo treatment. He did not have the port during his first round of chemo and he felt like a pin cushion from all the chemo, blood tests etc. The port makes each treatment and blood test less painful and so much faster, the nurses were having trouble finding a good vein. He is in the middle of round 2 of chemo, we are hopeful that the chemo continues to work and reduces his tumors even more. Wishing you the best and I hope her experience goes as well as ours.

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@waynepa Hi and welcome to Mayo Connect. I am glad that the chemo seems to be working. How many treatments will he be getting?

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waynepa | @waynepa | 5 days ago
In reply to @tomrennie "@waynepa Hi and welcome to Mayo Connect. I am glad that the chemo seems to be..." + (show)
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@waynepa Hi and welcome to Mayo Connect. I am glad that the chemo seems to be working. How many treatments will he be getting?

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@tomrennie right now he is scheduled for 4 rounds, each round is 3 days of chemo, 4th day injection and then 2 weeks of no treatment. I read that the tumors may stop responding to the chemo, which is disappointing, but we are focusing on the positives and the present and we will deal issues when they arise instead of worrying about scenarios that have not happened yet

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