Treatment for GI NET with liver mets not working: Options?

Ask your team of doctors if CAP/TEM chemo pill is an option for NET. My wife did 9 month cycles and achieved almost 70% reduction in tumors in liver and pancreas allowing for surgery. We just finished 4 treatments of PRRT, and are being considered for a liver transplant if our PET only shows NET in the liver this summer. Please let us know if any other questions you have, you got this!🙏

Hi harley4650, sorry to hear that treatment is not working as hoped. In addition to the helpful reply from @kim1965, I'm tagging fellow members like @deloris @vinnie694 @hopeful33250 who have experience NETs of the small intestine with liver metastasis.

In the meantime, here are some related discussions that you might find helpful.

- Neuroendocrine Carcinoma with Liver Metastasis
https://connect.mayoclinic.org/discussion/neuroendocrine-carcinoma/

- NETs: Anyone has Liver debulking for liver metastasis?
https://connect.mayoclinic.org/discussion/net-liver-debulking/

- What do I need to know about NETS?
https://connect.mayoclinic.org/discussion/what-do-i-need-to-know-about-nets/

Harley, what options is your team suggesting?

Did you do bland embolization?
Did you try Lanreotide?
I heard that there is a clinical trial for repeat PRRT now in progress and I think Alpha PRRT not sure of the name that my oncologist told me on Monday when he scheduled me for PRRT which I start on April 3rd
I feel your pain I have tried a lot of treatments with no success
Never stop fighting!!!
Good luck with your journey

No on bland embolization, did not try lanretide, been on octreotide for 1 yr. had 4 treatments of prrt, had blood test 1 month ago liver test were very high had a ct scan showing it speading. THANKS for the information i will check into it with my oncologist.

I wish you all the best

I also had similar results on CAP/TEM with my pancreatic NET with liver metastasis. Every thing shrunk including "innumerable" lesions on my liver. Keep trying. Something WILL work. Keep the faith and keep asking questions here. We are all there or have gone through the process of learning what works for each of us.

@tomrennie, how are you doing? Your case is similar to my wife’s. Our team is recommending a liver transplant to attempt to get a majority of the NETs that we know about out, but we haven’t agreed yet. We are waiting for a PET scan in June before we decide.

iam doing ok. but i have lots of diarrhea. liver is swollen, very fatigue. The oncologist think it may be a blocked bile duck, having ct/ pet scan next week.

Kim, I remember. Thanks for asking. I stopped taking temozolomide about 5 months ago and now only take capecitabine. My 4 month scan on March 6th showed no growth. My oncologist said stay the course of capecitabine, but I can take a month off when I want before my next 4 month scan. My body could use a break. Initially, he thought the lesions on my liver would be tricky. But, the CAP/TEM did their job and whacked the crap out of the little renters. The oncologist says there is no immediate need for concern about my liver. Everything is functioning properly. I understand the logic behind the liver transplant, but is it functioning properly? What are you and your wife thinking? I understand that the June Pet scan is a big factor.

When our team brought it up as an option last spring, it kind of threw us for a loop. The main response from them is it’s a chance, although not guaranteed to remove NET from the body. We decided to get a 2nd opinion from Mayo Clinic in Rochester, just got back this week. They won’t suggest one way or the other, but said it is a very aggressive choice to do the transplant this summer. They suggest giving the body a rest and monitor it for a while, as long as the PET scan in June is same or better than recent scans. We are also checking in with Dr Lui in Denver to get his opinion also. Glad to hear your doing better!