Neuroendocrine Carcinoma with Liver Metastasis

Hopefully there is someone out there still monitoring this. I have chronic NET that started in the small bowel and was stage 4 before it was caught. It started in 2020. My scans showed lesions in my ovary and lung but didn't light up. In 2024 during a regular check up both ovary's were showing lesions. Had a hysterectomy and both were metastasized NET. Had a PET scan and found 2 more tumors in my liver. I am on Lanreotide currently for chemo. Have to tell you i'm not optimistic. I continue to have symptoms and like most people just want to feel better. So many questions like what is the new "feel better expectation' ? Will I ever have my old energy back. Anyone else out there in this stage of the illness?

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?

Hello @vickihorseman and welcome to Mayo Connect. From your post, it looks like you have had quite a journey with NETs. I also have had NETs in the small intestine (or maybe mid-gut). My first surgery was in 2003, and my third surgery was in 2016.

With the kind of experience you have had, I would highly recommend a consultation with a NET specialist. Mayo Clinic has NET specialists at all three of their locations. Here is a link for information about appointments at Mayo Clinic, http://mayocl.in/1mtmR63. If for any reason you cannot be seen at a Mayo location, here is a list of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

Often, by reviewing your situation with a NET specialist, they can provide your current oncologist with the best treatment plan for your particular diagnosis.

Your question about a "feel better expectation" is difficult to answer as everyone's experience is different. It is dependent on so many variables that it is hard to let you know what to expect.

After three surgeries, my fatigue level is a factor. Surgeries of the digestive tract can cause problems with eating and often weight loss. Have you had any of these problems? A consultation with a registered dietician can be helpful if you experience problems with food or digestive tract problems such as diarrhea or constipation.

How are you feeling overall?

I’m right there with you having issues with fatigue and appetite. I just don’t have an appetite at all most of the time which I miss. This last 3 weeks haven’t been great but I expect the shot to get me going any day now. My dose is now every 3 weeks so let’s hope that helps.
Mostly I’m just tired and that sucks.
We will see what happens after the scan and a few more doses. Want to give it a chance to work I hope. If not I see much travel in my future 😁

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?

I have my liver ablation this week. I’ll let you know how that goes.

I have my liver ablation this week. I’ll let you know how that goes.