Welcome to the NETs Group! Come say hi.

Thank you for your reply.

He had an insulinoma removed from the tail of his Pancreas and got along very well. We were unaware that they return. Our doctors referred us to Mayo.

Hello @mit and welcome to Mayo Connect. Yes, you are doing this right!

I am so glad to hear that your husband will be seen at Mayo later this month. We have a discussion group devoted to insulinoma. Here is the link, https://connect.mayoclinic.org/discussion/insulinoma-1/. You might be interested in reading the posts and having some information prior to your husband's visit.

What type of surgery did your husband have in March? Did your husband's current doctor refer him to Mayo or did you decide to do this on your own?

Thank you so much for your kind and supportive response. I will keep you in my prayers.

I was diagnosed with Carcinoid Cancer w/an unknown primary in 2003. For 3 years I was on a pump 24/7 with Sandostatin and 2 Sandostatin injections every 2 weeks. After my diagnosis, my doctor had an Interventional Radiologist examine my liver for tumors. He found 3 of varying sizes which he proceeded to 'kill'. Those have not returned as far as I know.

The flushing has left several 'red vein' spots on my face of varying sizes. I use foundation to cover them when I need to look my best. Other days, I just ignore them.

I still receive 1 Sandostatin injection every 2 weeks to try to control the flushing & progression. From what other English patients have told me in the past, difficulties with Lanreotide is about the same as Sandostatin. The one thing I do know from past relationships with English patients, is that unless you have funds to pay for additional treatment, the normal limit of Lanreotide is 1 injection every month. I hope that has changed by now. If I had lived in England, I'm not sure I would still be here.

Wishing better days for everyone!
Sandi

Think positive thoughts as you travel to the Mayo! I'm sure they will work diligently to help your husband! Sending big hugs!

Sandi Barkan

Hello, I’m not really sure if I’m doing this right, but I’ll try. My husband had surgery in March for an insulinoma and was doing very well until Aug. 9th when his blood sugar plummeted. He’s been in the hospital since then but have an appt. at Mayo Sept14th. He’s flying up there in an air ambulance and I’ll drive up. We have no idea what to expect, but have faith in the doctors there (faith in Jesus first, tho). I just wanted to see what this group is like…it seems very friendly and welcoming.

Thank you

Hello @sophiarose

Personally, I have never taken either octreotide or lanreotide so I do not know the difference between the two. I understand that one is easier to inject than the other. Here is an article from the National Library of Medicine about the two different medications, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6643159/. I hope some of our members who have used these meds will be able to answer this question for you. Also, this might be a good question to ask the NETs support group on the first Thursday of each month.

The fact that the primary NET is unknown is a common problem. Have you had a Gallium 68 scan to try to determine where the primary is located?

Sorry I have been diagnosed with metastasized liver NETs don’t know where the primary is as of yet