Neuroendocrine Carcinoma with Liver Metastasis

Posted by carrie55 @carrie55, Sep 23, 2022

So first of all Hi! I’m Carrie and live in Alberta Canada. Just diagnosed and started chemotherapy for my cancer that started in my bowels and metastasized into into my liver. The doctors say I’m terminal but won’t give me a timeline. Is this normal? And I have another question: are NETS the same as Neuroendocrine Carcinomas? This is what they tell me I have in my liver now.

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

@physedr

I was diagnosed with a net tumour in my colon in 2021. This metastasized to the liver, the colon tumor was removed. The liver has about 6-10 small tumors- too small to remove. I have received deep injections of lanreotide / somatuline autogel 120 mg. since March 2002. So far I have been doing well, the tumors have remained stable. I do wonder about the long term effects of the injections. I do exercise every day(walk/ Nordic walk at least 2 miles + exercises 3 times a week for strength and mobility) and take naps! I am 80 years old.

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Hello @physedr and welcome to the NETs support group on Mayo Connect. I am glad that you found this forum. It is a great place to both give and receive support and encouragement. I see that you have already met @pavlina60, who has a similar diagnosis.

I am glad to hear that the liver tumors have remained stable. That is very good news. The fact that you are able to still be physically active is a great indication.

I see that you are concerned about the long-term effects of the injections. Do you have any particular concerns or are you having any side effects now?

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@physedr

I was diagnosed with a net tumour in my colon in 2021. This metastasized to the liver, the colon tumor was removed. The liver has about 6-10 small tumors- too small to remove. I have received deep injections of lanreotide / somatuline autogel 120 mg. since March 2002. So far I have been doing well, the tumors have remained stable. I do wonder about the long term effects of the injections. I do exercise every day(walk/ Nordic walk at least 2 miles + exercises 3 times a week for strength and mobility) and take naps! I am 80 years old.

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Hello! I have similar diagnosis - pNET and liver metastases. Surgery for the pNET and debulking for the liver. I have been on Lanreotide since March 2023. So far I have noticed my hair falling and my blood glucose is elevated. I walk for exercise 2-3 mi most days. Have lost a lot of wieght, but am catching up now.

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I was diagnosed with a net tumour in my colon in 2021. This metastasized to the liver, the colon tumor was removed. The liver has about 6-10 small tumors- too small to remove. I have received deep injections of lanreotide / somatuline autogel 120 mg. since March 2002. So far I have been doing well, the tumors have remained stable. I do wonder about the long term effects of the injections. I do exercise every day(walk/ Nordic walk at least 2 miles + exercises 3 times a week for strength and mobility) and take naps! I am 80 years old.

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I sure will. I posted so others would see there are a lot of choices for treatment.
Thanks
Alina

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@qbandoc1

Appetite is so-so. Xeloda often causes weight gain, but I think this is mostly retained fluid.

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I hope that you keep posting, @qbandoc1. I look forward to hearing from you.
Will you post updates as you progress in your treatment and start back to work?

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@hopeful33250

Hello @qbandoc1 and welcome to the NETs support group Mayo Connect. It sounds like the treatment plan has been quite effective for you. You must be relieved! Going back to work on a limited basis must feel very good.

We have another member who has mentioned the Imfinzi treatment, here is a link where he posted about it,

https://connect.mayoclinic.org/comment/793209/

If you go to the Search icon at the top of your screen, you can enter the names of the other meds you mentioned, and it will provide you with posts that mention these medications.

How are you feeling now? Is your appetite, OK?

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Appetite is so-so. Xeloda often causes weight gain, but I think this is mostly retained fluid.

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@qbandoc1

After 2 yrs of intermittent diarrhea, I was diagnosed with NET around Dec 1. It probably started in the appendix and spread to liver. I received 8 cycles of oxaliplatin, 5 FU and Imfinzy every 2 weeks. After 4 cycles I was clear by PET, thank goodness. Now i am on Imfinxy,once a month and Xeloda, an oral 5FU. I hope to go back to work in a week on a limited schedule. I don’t know how many people are getting this regimen, am curious to know.

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Hello @qbandoc1 and welcome to the NETs support group Mayo Connect. It sounds like the treatment plan has been quite effective for you. You must be relieved! Going back to work on a limited basis must feel very good.

We have another member who has mentioned the Imfinzi treatment, here is a link where he posted about it,

https://connect.mayoclinic.org/comment/793209/

If you go to the Search icon at the top of your screen, you can enter the names of the other meds you mentioned, and it will provide you with posts that mention these medications.

How are you feeling now? Is your appetite, OK?

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@bnjncrew

Hello. My thoughts are with you. My husband has had 3 of 4 lutathera treatments (PRRT) his scans showed reduction after the first two treatments. His last treatment is in June but want you to know he is doing the best that I have seen in the two years of this process. His bloodwork is positive and his energy level is very good. His is also stage 4, but, insulinoma pancreatic origin, NET’s that metastasized to his liver. We are feeling optimistic. My best to you.

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After 2 yrs of intermittent diarrhea, I was diagnosed with NET around Dec 1. It probably started in the appendix and spread to liver. I received 8 cycles of oxaliplatin, 5 FU and Imfinzy every 2 weeks. After 4 cycles I was clear by PET, thank goodness. Now i am on Imfinxy,once a month and Xeloda, an oral 5FU. I hope to go back to work in a week on a limited schedule. I don’t know how many people are getting this regimen, am curious to know.

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@bluebelle

Hi Carrie! I am do sorry to hear your news and I completely empathize with your situation. I also have stage 4 neuroendocrine cancer which originated in my ilium (small intestines), spread into many lymph nodes, and has now metastasized to my liver. I had been on monthly Octreotide injections for the first 6 months and now with the latest PET scan revealing metastasis to my liver, I will be starting a relatively new treatment to the US called Lutathera which is a radiation treatment that specifically targets these neuroendocrine cancer cells. If you’re interested, please look it up as the results have been very successful especially for the symptoms. My doctor did not do chemo as he said it is generally not effective but I’m sure your doctor had his/her reasons and as we know, every case is different. Please don’t give up, please get a second opinion that specializes in NET cancer, and see what you think about this new treatment. Unfortunately, it is not offered everywhere and we just got it in the US a few years ago. I should start mine next month and I’m excited bc I believe this is our chance to survive:) I don’t know you, but I love you and I’m holding you in my prayers and in my heart❤️
Sherry

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Hello. My thoughts are with you. My husband has had 3 of 4 lutathera treatments (PRRT) his scans showed reduction after the first two treatments. His last treatment is in June but want you to know he is doing the best that I have seen in the two years of this process. His bloodwork is positive and his energy level is very good. His is also stage 4, but, insulinoma pancreatic origin, NET’s that metastasized to his liver. We are feeling optimistic. My best to you.

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So sorry to hear that Carrie. By all means, talk to your doctors about alternative treatments. Canadian cancer care is second to none.

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