Any one with Neuroendocrine tumors getting the shot once a month?

Hello @elainekb4

I am glad that you found Mayo Connect. It is difficult to face this cancer alone. I joined Mayo Connect when I was facing my third NET surgery, and I have appreciated the support of other members. Are you currently being seen at Mayo Clinic?

I would like to introduce you to @tomrennie, who also has had some NETs in the bone. Perhaps he can share more with you about this.

What symptoms are most bothersome right now?

I receive an injection of Lanreotide every 21 days. I’ve had 55 injections and the only side effect is fatigue and occasionally a small lump at the injection site which can take weeks to dissipate. Best of luck with your journey.
Tom

@elainekb4 As @hopeful33250 has said, I have had my NETs show up in my bones from my skull to my tibia. With treatment, all just come and go other than my pelvic bones. Fortunately, things have been relatively stable for a few years. How are you managing with it all?

Yes I'm getting lanreotide once a month since June 2026. Just had my 4th shot couple of weeks ago.
My experience with my shot the second time was proactive vomiting and several hits of vomiting the next day. Don't be afraid. That didn't happen with 1st 3rd and 4th shot. It has interfered with my sleep. And I have a few lumps that are slowly going away.

@hollywood817
Hey Tom, I receive lanreotide injections every 28 days. I'm on #10 obviously the shots are working for you and that is great news.
My Tumors are located in my pancreas, slow growing and not considered a grade 1. If you don't mind could I inquire where your cancer is? I get a little fatigued as well but that's about it. Thanks
Regardless thanks for responding as it is a positive story and we all need those. Sincerely Tom M.

@doonman

My cancer started in my pancreas but chose my liver as its final destination! Currently I only have tumors in my liver. I was diagnosed in January 2023 and have been thru 8 rounds chemo, the last treatment was April 2025. Please keep in touch.
Tom

Hollywood817
My cancer started in the tail of my pancreas and was removed February 2017. I had been cancer free until this year with mets to my liver. I am 81 and at the Hopkins working with Neuroendocrine Cancer group. My mets are evidently slow growing as my initial cancer was. I am on Lanreotide every 28 days as "debulking" was determined not feasible because of number of mets and my age was another factor. I seem to be responding to the Lanreotide with fatigue and my blood pressure being higher as the only side effects. Curious as to how that compares with your protocol. I am in VA.

Hi I have been taking 120 of lanreotide for about 3 years now. I would say avoid fatty or greasy food on the day of injection. Also cut back on sugar and corn syrup to avoid getting diabetes 2 as it affects the pancreas. As to symptoms fatigue for 2 days common plus maybe stomach cramps if you eat fatty or greasy food on 2 days after the jab. I have stage 4 grade 2 cancer in bowel and liver, been stable for 3 years now after prrt and then jabs.. so well worth it. Remember you can live a full life with this and though its acute its not terminal, try and live a normal long life.

@bren1: I really appreciated reading your words about NET diagnosis NOT necessarily being a death sentence. It is a bitter pill to swallow when Oncologists keep repeating that my liver metastases = stage IV = terminal disease.
My NET cancer road (10/2021) is similar to yours (small bowel primary; well-differentiated; grade 1; KI67-1%; metastases liver multiple tumors).
Fortunately when my tumors showed progression my Oncologist NET Specialist provided Lutathera PRRT treatment. I had extraordinary shrinkage and now 2+ yrs later all remains stable. Life is good.
It is so reassuring to know you are touting a great prognosis and encourage all of us to continue to live our best lives… every day!

Very encouraging words, @bren1. As @dbamos1945 said, you do offer a realistic and positive perspective. I also appreciate the thoughts that you shared about how you eat after injections. That is most helpful!