Anyone had a large NET in the liver? What treatment did you have?

Yes, my husband does. His dr said it was nonaggressive and noninvasive. He’s taking a monthly injection of Sandostatin.

Thank you. It seems like everyone has smaller ones and I don’t know which treatments that might eliminate. I hope your husband does well!

I just had to look up Sandostatin. 😊 It looks like maybe it’s used for diarrhea. Is that what he’s using it for? Besides the large NET in the liver, I am also 71 with heart disease and high blood pressure. I feel like I have so many things against me. I’ll just have to wait until I gotoMayo next month and see what the say.

@cindypat1, which Mayo Clinic location will you be going to? Is this your first time to Mayo?

I will be going to Rochester. This will be my first trip there. Will have more testing and hopefully hear what they recommend for treatment. I don’t go until Feb. 20. So it’s still a long time to wait. Seems like forever since my testing and biopsy here!

My husband was diagnosed with stage four grade 2 NET in October 2022. He had a large tumor on his pancreas, one on a lymph node, one spot on spine and too many tumors in the liver to count. After a year of oral chemo along with a monthly lanreotide injection and Y 90 treatments, which are radiation Infusions to each half of the liver after a test run, many tumors disappeared and he is down to 20 or 30 in the liver. His cancer is stable and he’s feeling well. Good luck to you and your husband.

Thank you so much for your reply. I love hearing things are good with so many. Until I go to Mayo next month I won’t have a lot of answers for myself.

I forgot to mention my husband was diagnosed at 70 years old. His oral chemo was a combination of Cap/Tem. His oncologist had only planned to have him on the oral medication for six months, but he was able to withstand it well and was allowed to stay on it for a full year. After all of his treatments, his cancer reduction is over 50%.

I'm pleased that you will be seen at Mayo, @cindypat1. The NET specialists there are outstanding. I look forward to hearing more about your appointment.

How are you feeling? Were you having symptoms that led to the diagnosis?

I am feeling fine. For a 2 week period in November I did have pain on and off in my upper abdomen and back. But it stopped and haven’t had any since. Now I ‘m glad I did because that’s why I went in and saw my Dr. Otherwise I still wouldn’t have any idea there was something wrong. It’s all so strange!