Just here to share my story and hopefully help others. I was diagnosed at 57 with stage 4 Grade 2/3 Pancreatic NETS that had metastasized to my liver and lymph nodes in the area. I had about 20 tumors in my liver but the Cancer had not spread anywhere else. One of the Liver lesions was 4x7cm. I did a 5 month course of Lanreotide but I think that was a waste of time... my Cancer continued to Progress. Fortunately I live near Portland, Oregon and the OHSU Medical Center. I was incredibly lucky to qualify for a Phase 2 Clinical Trial sponsored by a German Entity going on at OHSU. Here is a link for more info and the website says they are still recruiting. Furthermore, this same Clinical Trial is being performed at other Medical Centers throughout the country... there's a list on the OHSU website. I was informed i'm not allowed to post the Url/link on here but search OHSU Clinical Trials, Hit the box that says "Interested in Clinical Trials" and then type in PRRT.
The Trial is specifically for those with GNETs and PNET's. I then got extremely lucky through randomization which is how they divide those in the trial: You're either randomized to receive PRRT - LUT-77 or the Standard Method of Care which i believe is Captem. (Chemotherapy). I just completed my 3rd treatment. My first 2 treatments I had no side effects accept just a little tired. Blood work and Kidney Function looked good after 2 treatments. 2 weeks after my second treatment I had Scan performed and my Oncologist told me I was responding,.. almost 25% of my Cancer had reduced and my tumors were shrinking. That's only after 2 treatments 1 year after being diagnosed. I just finished my 3rd treatment and besides a little diarrhea and fatigue for a few days I feel good. Next scans in mid-June so hoping it continues to work and doesn't metastasize. They say if you respond after 2 or 3 treatments then there's a very good chance it's going to turn out well. This clinical trial gives 6 PRRT Treatments instead of 4 so there is risk involved but it could make a big difference. I'm very cognizant however that anything can change at anytime. Don't spend your time reading about Case Study Results online. It won't serve you well. The personal accounts in this forum is great; but in general i would avoid reading about survival rates, etc. ... everyone responds very different. I'm new on this forum so i'll check in regularly and feel free to reply if you have any comments, suggestions, or questions.