Statistics on progression free survival while on SSA / Lanreotide

Posted by pete1962 @pete1962, Jan 16 1:28am

I have had a full whipple in March 2019. In March 2023 I was diagnosed with neuroendocrine liver metastases (NELM), Grade 2. Since June 23 I am on monthly Lanreotide 120mg and in my 2 scans since on SSA (base scan from Dec 22) my tumors have slightly reduced.
I try to find statistics about how long SSA keep the tumor at bay but an not very lucky. I found a person who is on year 14 of SSA treatment and some statistics of PFS of 35 months but was unclear if NELM or other tumor. I try to get to a decision of when to retire so that my wife and myself will be financially secure and that we can spend time together before the cancer has success over my body.
Does anyone have long term experience with NELM / SSA or reference to statistics?
Thanks, Peter

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

davisnrn | @davisnrn | Feb 19 10:58pm

Well, love getting some good news! Mayo review of my local CT compared to Mayo scans found the possible new liver tumor is not new-so Everolimus is working. My Mayo oncologist gave me a 1-2 week time off everolimus with a restart at half dose (5mg) due to my side effects. So that vacation from everolimus was great! Got some energy back, side effects reduced, and I am feeling much better on the reduced dosage. YAY! So Life is good. Someone asked if immunotherapy was a consideration. Everolimus was described as targeted therapy and PRRT is a radioactive infusion approach to tumor treatment that is my alternative to everolimus oral therapy plus monthly lanreotide injections. These two pathways are what was recommended by my doctors at Mayo. Good wishes for good news to all of us-however small or great.