Neuroendocrine Carcinoma with Liver Metastasis

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

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.

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.

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?

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

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.

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.

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.