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

Posted by amygirl @amygirl, Dec 23, 2024

I have heard there is side effects to the once a month shot( unsure of the name) what has any one experienced?

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

kaiulani | @kaiulani | Apr 24 11:41am

The same thing happened to me: I’ve been on these shots for 13 months already but my cancer is still advancing. I was initially diagnosed with stage 4 pNET in July of 2023. I had a Whipple in October of 2023 and, as of 24 April 2025, I’m waiting to get PRRT but, the way things are going, I seriously doubt I’ll ever live that long. But, lucky for me, in Canada MAiD (medical assistance in dying) is the gold standard of “treatment”.

cordelia73 | @cordelia73 | Apr 23 8:05pm

In reply to @kevinmonroemi "I still do them probably forever recently I has #45" + (show)

And had the tumors growed? Do you feel ok always?

kevinmonroemi | @kevinmonroemi | Apr 23 3:49am

That’s probably true some people have a good response and have a stable response. My tumors continued to grow

kevinmonroemi | @kevinmonroemi | Apr 23 3:46am

In reply to @cordelia73 "Thanks for answering, how long did you do the injections? Did the other treatments work for..." + (show)

I still do them probably forever recently I has #45

amygirl | @amygirl | Apr 22 11:16pm

In reply to @kevinmonroemi "Lanreotide only seems to control symptoms for me it did not shrink tumors. My tumors did..." + (show)

I was told the injections are suppose to stop the growth not shrink.

amygirl | @amygirl | Apr 22 11:12pm

In reply to @amygirl "I wasn't given a stage or grade. They said slow growing. Monitoring with MRI every 3..." + (show)

Oops not 3 mths 6 mths.

cordelia73 | @cordelia73 | Apr 22 9:38pm

In reply to @kevinmonroemi "Lanreotide only seems to control symptoms for me it did not shrink tumors. My tumors did..." + (show)

Thanks for answering, how long did you do the injections? Did the other treatments work for you? We are just staring down this road so still learning. Hope you are stable now and feel good.

cordelia73 | @cordelia73 | Apr 22 9:37pm

In reply to @pavlina60 "@cordelia73 - my tumors have been stable, no new growth for the last 2 yrs. There..." + (show)

Hi and thanks for answering so soon, Im trying as best as I can to stay positive. Maybe now that my husband has had the injection, I will start top feel that we are doing something to stop this thing. I admire your attitude towards this and will try to copy your example. I will keep praying as well and doing the best we can medical wise as well. Thank you for you kindness.

kevinmonroemi | @kevinmonroemi | Apr 22 4:11am

In reply to @cordelia73 "Have you tumors grown during this time or spread to other parts of the body?" + (show)

Lanreotide only seems to control symptoms for me it did not shrink tumors. My tumors did grow and I had other treatments chemo and radiation

pavlina60 | @pavlina60 | Apr 22 12:42am

In reply to @cordelia73 "Thanks for your answer. That's exactly what Im afraid of, this being a death sentence. Did..." + (show)

@cordelia73 - my tumors have been stable, no new growth for the last 2 yrs. There are other " tools" if that happens- chemotherapy or PRRT / Lutathera for receptor responsive NETs. People live upward of 10 yrs with this disease. It is considered now more like a chronic disease. Please, please be positive! There will be bad days, but there are good days as well! Keep the faith!