1. < Neuroendocrine Tumors (NETs)

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?

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pavlina60 | @pavlina60 | Apr 21 7:38am
In reply to @cordelia73 "If you don't mid me asking, What was your grade and stage 11 years ago? My..." + (show)
@cordelia73

If you don't mid me asking, What was your grade and stage 11 years ago? My husband has just been diagnosed with grade 1/2 stage 4 with liver metastases and Im very scared. He will get the shot every month from now on and hope for no growth.

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I have pancreatic NET , grade 2, stage 4 with liver metastases. Had debulking surgery on Feb.1, 2023. Been on Lanreotide every 4 weeks, have CT scans for monitoring (first every 3 mo, then every 4 mo, now twice a year). My tumor was between the spleen and the pancreas, so surgeon removed the spleen along with more of the pancreas, and gallbladder too (long term Somatouline/Lanreotide injections damage the gallbladder).
My side effects are thinning hair (I take biotin for it), elevated blood glucose. Reach out if I can be of help!
Keep the faith! This diagnosis is NOT a death sentence!💜🦓

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1 reply
cordelia73 | @cordelia73 | Apr 21 9:39pm
In reply to @pavlina60 "I have pancreatic NET , grade 2, stage 4 with liver metastases. Had debulking surgery on..." + (show)
@pavlina60

I have pancreatic NET , grade 2, stage 4 with liver metastases. Had debulking surgery on Feb.1, 2023. Been on Lanreotide every 4 weeks, have CT scans for monitoring (first every 3 mo, then every 4 mo, now twice a year). My tumor was between the spleen and the pancreas, so surgeon removed the spleen along with more of the pancreas, and gallbladder too (long term Somatouline/Lanreotide injections damage the gallbladder).
My side effects are thinning hair (I take biotin for it), elevated blood glucose. Reach out if I can be of help!
Keep the faith! This diagnosis is NOT a death sentence!💜🦓

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Thanks for your answer. That's exactly what Im afraid of, this being a death sentence. Did you tumors shrink or go to "sleep"? My husband is positive and eager to start, Im the one that has been having trouble dealing with everything and wanting to know life expectancy with this type of cancer, Ive never heard of it before. I hope you are fine and getting better every day. Thanks for answering.

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1 reply
cordelia73 | @cordelia73 | Apr 21 9:40pm
In reply to @kevinmonroemi "I had my 42nd lanreotide injection recently I’ve only had lethargy for a few days or..." + (show)
@kevinmonroemi

I had my 42nd lanreotide injection recently I’ve only had lethargy for a few days or so. I have stage 4 grade 2 with pancreatic primary metastic to the liver 20 tumors that are functioning gastrinomas injections control some of my symptoms

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Have you tumors grown during this time or spread to other parts of the body?

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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

Thanks for your answer. That's exactly what Im afraid of, this being a death sentence. Did you tumors shrink or go to "sleep"? My husband is positive and eager to start, Im the one that has been having trouble dealing with everything and wanting to know life expectancy with this type of cancer, Ive never heard of it before. I hope you are fine and getting better every day. Thanks for answering.

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@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!

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1 reply
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)
@cordelia73

Have you tumors grown during this time or spread to other parts of the body?

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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

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2 replies
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)
@pavlina60

@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!

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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.

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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)
@kevinmonroemi

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

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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.

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1 reply
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)
@amygirl

I wasn't given a stage or grade. They said slow growing. Monitoring with MRI every 3 months.

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Oops not 3 mths 6 mths.

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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)
@kevinmonroemi

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

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

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