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Neuroendocrine Carcinoma with Liver Metastasis
Neuroendocrine Tumors (NETs) | Last Active: Sep 19 6:17am | Replies (79)Comment receiving replies
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.
Replies to "My NET story is similar to yours--small intestines metastasized to liver. I get the same monthly..."
Hello, Im Vicki and my story is similar. I started out in lower intestines om 2020 and had surgery to remove from intestines. l'm guessing you may have been pretty sick when diagnosed, I know I was. The good news is after about a year or so on the injections I do pretty good. As mentioned by others fatigue is dominating sometimes but not always. I had a hard time staying awake, even while driving unfortunately. Doc put me on Ritalin and that helps some. The other unpleasant part is there are no more breaks from scans and Dr visits. I just made it to every 3 months and thats quite and improvement. Most of the time I feel fortunate that I can get around and do the things I can. When I go to the hospital and see what others go through I really feel fortunate.
I have those little nets crawling around in my liver and am due for a scan in november. I get MRI's as they show the liver activity better. Last scan didn't show any growth.
I keep my hands busy and focus on that. Beats thinking about cancer. Hang in there
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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?