Statistics on progression free survival while on SSA / Lanreotide

It’s so hard to generalize one experience to others except as an example. In 2014-15, I had surgery for primary NET in my small intestine with a secondary in the mesentery (webbing). Surprisingly in 2018, i had 20+ NET mets in my liver and started Lanreotide injections every 28 days. Had embolization in 2019 of 9.5 of the liver mets (all they could reach). In 2022, scans showed some progression of liver tumors-more and increased size. And my Mayo oncologist said after 4 years on Lanreotide for me it was becoming less effective and he recommended Everolimus oral therapy or PRRT in addition to continuing Lanreotide. I am now almost 11 months on Everolimus daily plus Lanreotide monthly. Awaiting Mayo review of my recent CT scan as I may have one new liver tumor measured at 1.9 cm. and I am having some concerning side effects of Everolimus so may have to consider the next treatment option. However, other than fatigue and not having my usual energy and too much weight loss, I feel pretty good and say that I am in pretty good shape for the shape I am in 😃. I am also 77 years old and feel grateful for every day, even those sort of crummy days. I travel and need very little help, love and enjoy my friends and family, adore my husband. So 2024 makes 10 years I have been “doing NETS”. I don’t know how long I will do as well as I am now, but I am treating this now as a chronic illness to be managed as best as I can. So over time, NETS is always with me, but it no longer consumes my every waking moment. I am not a worrier, not how I am wired. If it’s in my control, I take the necessary action. If not in my control, I let it be. Much easier to do 10 years down the road than during the first year when everything was new, unknown, and a bit scary. Good luck and stay well.

I have heard of cases in excess of 20 years on SSA. I Believe Lano is about 15 Years old and prior it was the other ssa. I ask you what you eat typically in a week. Not how much , but what does it consist of? I am making progress on my NET , just over 5 years diagnosed, stage 4 to my liver.

I have heard of cases in excess of 20 years on SSA. I Believe Lano is about 15 Years old and prior it was the other ssa. I ask you what you eat typically in a week. Not how much , but what does it consist of? I am making progress on my NET , just over 5 years diagnosed, stage 4 to my liver.

Hi Peter
Are the liver Mets the full extent of your disease now? If so, has your doctor discussed a liver directed therapy such as some form of embolization? (Chemo, bland or radioembolization)
My husband had a huge tumor burden in his liver and radioembolization killed nearly all of it and left the few remaining tumors stable for 10 years (he was on lanreotide during that time)

I had a full whipped done on May 12, 2017, I was put on creon 1200, 2 capsules take before ever meal. Was told to eat a lot of protein, eat whatever I could handle. I was cancer free for a year. Then I was told that I had pancreatic Neuroendocrine tumors. I was put on lanreotide acetate spring shot every 28 day on 10/01/2018, still take creon 2 pills 30min before I eat. I have a lot of diarrhea. and lots of gas. What do y’all do for that? I have lot of stomach pains if I eat or if I don’t eat the doctor said I could eat whatever I could tolerate so I’m I’ve gotten so I’ll watch what I eat but I eat a lot of eggs for protein and now and then I eat whatever I want because I’m gonna pay for it anyway don’t matter. I have lots and lots of stomach pain. My biggest problem is the diarrhea it came get so bad.i eat then 5 to 10 minutes I am in the bathroom. The diarrhea got so bad that I just quit eating. I lost about 10 pounds and the doctor got upset but it was either eat and have diarrhea. I don’t eat and don’t have diarrhea. I chose not to eat but I knew I couldn’t keep that up, so I’m back to Eaton again they put me on some diarrhea pills which didn’t help no more than the regular diarrhea pills from the store so now they got me on xermelo 250 mg. And this medicine supposed to call constipation which it didn’t for me. I still had diarrhea and really bad stomach crowns after I took that and some other symptoms with it so I decided to cut it in half and take a half a pill every time I ate with the crayon 30 minutes before I eat, and that has helped a lot, does anybody else have any problem with severe diarrhea like I do?

It’s so hard to generalize one experience to others except as an example. In 2014-15, I had surgery for primary NET in my small intestine with a secondary in the mesentery (webbing). Surprisingly in 2018, i had 20+ NET mets in my liver and started Lanreotide injections every 28 days. Had embolization in 2019 of 9.5 of the liver mets (all they could reach). In 2022, scans showed some progression of liver tumors-more and increased size. And my Mayo oncologist said after 4 years on Lanreotide for me it was becoming less effective and he recommended Everolimus oral therapy or PRRT in addition to continuing Lanreotide. I am now almost 11 months on Everolimus daily plus Lanreotide monthly. Awaiting Mayo review of my recent CT scan as I may have one new liver tumor measured at 1.9 cm. and I am having some concerning side effects of Everolimus so may have to consider the next treatment option. However, other than fatigue and not having my usual energy and too much weight loss, I feel pretty good and say that I am in pretty good shape for the shape I am in 😃. I am also 77 years old and feel grateful for every day, even those sort of crummy days. I travel and need very little help, love and enjoy my friends and family, adore my husband. So 2024 makes 10 years I have been “doing NETS”. I don’t know how long I will do as well as I am now, but I am treating this now as a chronic illness to be managed as best as I can. So over time, NETS is always with me, but it no longer consumes my every waking moment. I am not a worrier, not how I am wired. If it’s in my control, I take the necessary action. If not in my control, I let it be. Much easier to do 10 years down the road than during the first year when everything was new, unknown, and a bit scary. Good luck and stay well.