1. < Neuroendocrine Tumors (NETs)

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.

amygirl | @amygirl | Jan 4 2:36pm
In reply to @hopeful33250 "Hello @amygirl, Many members have responded to you regarding different treatments for liver METs. Please remember..." + (show)
@hopeful33250

Hello @amygirl,

Many members have responded to you regarding different treatments for liver METs. Please remember that medications to treat cancer do not always result in the same side effects for all patients. If you read the posts about the monthly injections you will see that some side effects lessen over time. Whenever we consider a cancer medication, we need to consider the benefits that can be obtained.

What side effect is concerning to you?

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6 months.

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kaiulani | @kaiulani | Jan 5 12:42pm

Hi! I live in Calgary and I have Stage 4 pNET with overwhelming liver mets. My most recent PET scan in late November showed further progression to my small bowel and to the right parietal bone. Please feel free to DM me, if you are willing to discuss 🙂

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 13 6:57pm
In reply to @kaiulani "Hi! I live in Calgary and I have Stage 4 pNET with overwhelming liver mets. My..." + (show)
@kaiulani

Hi! I live in Calgary and I have Stage 4 pNET with overwhelming liver mets. My most recent PET scan in late November showed further progression to my small bowel and to the right parietal bone. Please feel free to DM me, if you are willing to discuss 🙂

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Hi @kaiulani, I'm sure the November news of further progression was shocking, disappointing and a roller coaster of other emotions. Are you currently on any treatment? Do you work with a palliative care team to help manage side effects?

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estrellita1 | @estrellita1 | May 18 12:10am

May husband has an endocrino tumor , it seems that it expand to the líver si that dangerous?

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | 4 days ago
In reply to @estrellita1 "May husband has an endocrino tumor , it seems that it expand to the líver si..." + (show)
@estrellita1

May husband has an endocrino tumor , it seems that it expand to the líver si that dangerous?

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Welcome, @estrellita1. I moved your question about neuroendocrine tumor spreading to the liver to this related discussion in the NETs support group:

- Neuroendocrine Carcinoma with Liver Metastasis https://connect.mayoclinic.org/discussion/neuroendocrine-carcinoma/

I did this so you can click the link and read previous posts and connect with other members like @tomrennie @amygirl @kaiulani @sophiarose and others.

Estrelita, what treatment is suggested for your husband? How are YOU doing?

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2 replies
estrellita1 | @estrellita1 | 4 days ago
In reply to @colleenyoung "Welcome, @estrellita1. I moved your question about neuroendocrine tumor spreading to the liver to this related..." + (show)
@colleenyoung

Welcome, @estrellita1. I moved your question about neuroendocrine tumor spreading to the liver to this related discussion in the NETs support group:

- Neuroendocrine Carcinoma with Liver Metastasis https://connect.mayoclinic.org/discussion/neuroendocrine-carcinoma/

I did this so you can click the link and read previous posts and connect with other members like @tomrennie @amygirl @kaiulani @sophiarose and others.

Estrelita, what treatment is suggested for your husband? How are YOU doing?

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tks for yr reply my husband is treated since 2020 with Octeotride injection, once a month now in his last Magnetic Resonance he has no significant changes in the tumor, but some spots in the liver, in few weeks we have a date with the oncologo, then they will see if they increase the medication, or change, or add something, very preocupated for him

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vinnie694 | @vinnie694 | 4 days ago
In reply to @estrellita1 "May husband has an endocrino tumor , it seems that it expand to the líver si..." + (show)
@estrellita1

May husband has an endocrino tumor , it seems that it expand to the líver si that dangerous?

Jump to this post

Hello, I was diagnosed about 2 1/2 years ago, primary tumor was identified in the small bowel and metastasized to the liver, I’ve been on Ocreotide shots every 28 days and recently finished my last Lutathera (radiation treatment) and, there have been no new tumors over the 2 1/2 years and halfway through my radiation treatment, some that were growing are actually shrinking.. Physical I don’t feel any different than I did back when I was diagnosed.. Mentally I feel a lot better.. Seeing a neuroendocrine specialist is definitely recommended!,

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kaiulani | @kaiulani | 2 days ago
In reply to @colleenyoung "Welcome, @estrellita1. I moved your question about neuroendocrine tumor spreading to the liver to this related..." + (show)
@colleenyoung

Welcome, @estrellita1. I moved your question about neuroendocrine tumor spreading to the liver to this related discussion in the NETs support group:

- Neuroendocrine Carcinoma with Liver Metastasis https://connect.mayoclinic.org/discussion/neuroendocrine-carcinoma/

I did this so you can click the link and read previous posts and connect with other members like @tomrennie @amygirl @kaiulani @sophiarose and others.

Estrelita, what treatment is suggested for your husband? How are YOU doing?

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I’m just wondering if this group still holds monthly Zoom meetings on the first Thursday of every month. Lately, I haven’t noticed that the meeting was taking place. I really enjoyed this group.

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2 replies
vinnie694 | @vinnie694 | 1 day ago
In reply to @kaiulani "I’m just wondering if this group still holds monthly Zoom meetings on the first Thursday of..." + (show)
@kaiulani

I’m just wondering if this group still holds monthly Zoom meetings on the first Thursday of every month. Lately, I haven’t noticed that the meeting was taking place. I really enjoyed this group.

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Yes, there is one scheduled for June 5 , 5:30-7:00 pm ET..On the home page I go to events and scroll June 5 events, click on the one for neuroendricine tumors, there is a link to register..

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vinnie694 | @vinnie694 | 1 day ago
In reply to @kaiulani "I’m just wondering if this group still holds monthly Zoom meetings on the first Thursday of..." + (show)
@kaiulani

I’m just wondering if this group still holds monthly Zoom meetings on the first Thursday of every month. Lately, I haven’t noticed that the meeting was taking place. I really enjoyed this group.

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The Events link is on the top of this page too!!

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