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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 7 9:13am
In reply to @mimighosh "I tried thie link yesterday (I didn't see this message until now), but it did not..." + (show)
@mimighosh

I tried thie link yesterday (I didn't see this message until now), but it did not work. Did the meeting take place yesterday?

Jump to this post

Hello @mimighosh,

The NETs virtual support group meets on the first Thursday of each month, from 5:30 - 7 P.M. EST. To obtain the Zoom link, you must pre-register. The link provided allows you to register, after registering, you will then receive the Zoom link. So it is a two-step process.

Before July's meeting, I will post the registration link so you can register and then obtain the Zoom link.

REPLY
lagunagrl | @lagunagrl | Jun 5 8:03pm
In reply to @vinnie694 "I am in the US, Florida,I go to Mayo Jacksonville .. I do get fatigued (could..." + (show)
@vinnie694

I am in the US, Florida,I go to Mayo Jacksonville .. I do get fatigued (could be the age) but but basically feel good, I still go to the gym for an hour when I’m not volunteering to help with the grounds at our church cemetery.. I do my own yard work but only a few hours where I used to be able to work all day. I do however take a nap during the day, but I know a lot of people without this cancer that do that too. . I believe the Lutathera treatment has been out for about 6 years..
Are your Tumors still growing or spreading?

Jump to this post

Thanks for writing back! Next week I get my first scan since I was diagnosed and started monthly injections. A bit anxious about that, but I will know more about how the tumors are reacting to the medicine. I'm 70 so that keeps me less active than I need to be. I think it's the age + NET + depression that's holding me back. Alas. I live in Wisconsin and am getting my treatment at the UW Hospitals. Take care.

REPLY
vinnie694 | @vinnie694 | Jun 5 6:52pm
In reply to @lagunagrl "My NET story is similar to yours--small intestines metastasized to liver. I get the same monthly..." + (show)
@lagunagrl

My NET story is similar to yours--small intestines metastasized to liver. I get the same monthly shots as well, but haven't heard about Lutathera. Are you in the US? I work with an oncologist who specializes in NETs, but she's never mentioned it. I'll ask her about it after my upcoming scan. When you wrote that you don't feel any different physically from the time you were diagnosed, are you feeling good or fatigued or? I was diagnosed in fall 2024 and fatigue seems to be a big factor for me. Deep fatigue. Take care.

Jump to this post

I am in the US, Florida,I go to Mayo Jacksonville .. I do get fatigued (could be the age) but but basically feel good, I still go to the gym for an hour when I’m not volunteering to help with the grounds at our church cemetery.. I do my own yard work but only a few hours where I used to be able to work all day. I do however take a nap during the day, but I know a lot of people without this cancer that do that too. . I believe the Lutathera treatment has been out for about 6 years..
Are your Tumors still growing or spreading?

REPLY
1 reply
kaiulani | @kaiulani | Jun 5 5:35pm
In reply to @vinnie694 "Yes, there is one scheduled for June 5 , 5:30-7:00 pm ET..On the home page I..." + (show)
@vinnie694

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..

Jump to this post

I don’t think my link is working: it always says they’re waiting g for the host to start the meeting

REPLY
1 reply
lagunagrl | @lagunagrl | Jun 5 5:27pm
In reply to @vinnie694 "Hello, I was diagnosed about 2 1/2 years ago, primary tumor was identified in the small..." + (show)
@vinnie694

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!,

Jump to this post

My NET story is similar to yours--small intestines metastasized to liver. I get the same monthly shots as well, but haven't heard about Lutathera. Are you in the US? I work with an oncologist who specializes in NETs, but she's never mentioned it. I'll ask her about it after my upcoming scan. When you wrote that you don't feel any different physically from the time you were diagnosed, are you feeling good or fatigued or? I was diagnosed in fall 2024 and fatigue seems to be a big factor for me. Deep fatigue. Take care.

REPLY
1 reply
vinnie694 | @vinnie694 | Jun 3 7:55am
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.

Jump to this post

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

REPLY
vinnie694 | @vinnie694 | Jun 3 7:50am
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.

Jump to this post

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..

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.