Welcome to the NETs Group! Come say hi.

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

Great news
What is the difference between octreotide and lanreotide
I currently switched doctors and she gives octreotide I have had 3 doses of lanreotide
Please let me know
Thank you

For all of you who are currently taking Octreotide for carcinoid syndrome, by injection, there is some good news for you. The FDA has recently approved an oral form of this medication.

Here is a link to the article, "Amryt Receives Orphan Drug Designation from the FDA for Mycapssa® (oral octreotide) for the Treatment of Carcinoid Syndrome"
https://www.globenewswire.com/news-release/2022/07/14/2479558/0/en/Amryt-Receives-Orphan-Drug-Designation-from-the-FDA-for-Mycapssa-oral-octreotide-for-the-Treatment-of-Carcinoid-Syndrome.html
Please note that Stage 3 trials of Mycapssa, to determine correct medication dosages, will begin sometime in 2023. We would not expect to see the drug become widely available until much later in 2023 and more likely early in 2024.

@kjstein
It was great that you could attend! Yes, I will contact you when I see a member who wants some first hand information PRRT. Also, feel free to post to anyone you meet in any of the NET discussions. I'm sure you're input will be helpful.