1. < Neuroendocrine Tumors (NETs)
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Anyone had positive results from Lanreotide injections?

Posted by doonman @doonman, Nov 26 11:31am

Has anyone had positive results from Lanreotide injections? Tumors in remission or shrinking?

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

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markmark007 | @markmark007 | Nov 30 11:13am
In reply to @rkklinger "@doonman My husband will have been on Lanriotide for 3 year on January 3, 2026. His..." + (show)
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@doonman My husband will have been on Lanriotide for 3 year on January 3, 2026. His first tumor was removed in 1995. He was rediagnosed 12/30/22 Stage 4 with tumors throughout his skull and body. His tumors have been and continue to be stable. The tumors have not increased in number or size. He has been moved to 6 month scans. He has minimal side effects -- mainly feeling a little tired. He does experience a pain in his left side occasionally especially if he eats fried foods. He is able to relieve the pain with GasX and lying directly on the pain. He exercises daily and maintains a normal lifestyle. We are 82 years old and work hard at keeping a positive attitude. Good luck with your treatments. We hope the lanriotide works well for you.

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@doorman
Your post is most interesting - great news that your husband is doing well -

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doonman | @doonman | Dec 1 8:55am
In reply to @rkklinger "@doonman My husband will have been on Lanriotide for 3 year on January 3, 2026. His..." + (show)
Profile picture for rkklinger @rkklinger

@doonman My husband will have been on Lanriotide for 3 year on January 3, 2026. His first tumor was removed in 1995. He was rediagnosed 12/30/22 Stage 4 with tumors throughout his skull and body. His tumors have been and continue to be stable. The tumors have not increased in number or size. He has been moved to 6 month scans. He has minimal side effects -- mainly feeling a little tired. He does experience a pain in his left side occasionally especially if he eats fried foods. He is able to relieve the pain with GasX and lying directly on the pain. He exercises daily and maintains a normal lifestyle. We are 82 years old and work hard at keeping a positive attitude. Good luck with your treatments. We hope the lanriotide works well for you.

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@rkklinger Thank you for your reply. My cancer is similar in that I first had a tumor in my small intestine removed in 2004 and clean scans and tests for 20+ years. This year 2025 my Chromogranin A test came back high. I wouldn't think the cancer could be dormant for 20 years but what do I know. I have two low grade tumors in my pancreas, so needless to say i'm frightened. But your response brought a positive vibe to my situation, thanks again and good luck to you and your husband.

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markmark007 | @markmark007 | Dec 1 9:09am
In reply to @rkklinger "@doonman My husband will have been on Lanriotide for 3 year on January 3, 2026. His..." + (show)
Profile picture for rkklinger @rkklinger

@doonman My husband will have been on Lanriotide for 3 year on January 3, 2026. His first tumor was removed in 1995. He was rediagnosed 12/30/22 Stage 4 with tumors throughout his skull and body. His tumors have been and continue to be stable. The tumors have not increased in number or size. He has been moved to 6 month scans. He has minimal side effects -- mainly feeling a little tired. He does experience a pain in his left side occasionally especially if he eats fried foods. He is able to relieve the pain with GasX and lying directly on the pain. He exercises daily and maintains a normal lifestyle. We are 82 years old and work hard at keeping a positive attitude. Good luck with your treatments. We hope the lanriotide works well for you.

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My wife has been battling NETs since 2014; pancreas and small intestine; they have metastasized to bones and most recent imaging has shown several small skull lesions. We are getting second opinions for next treatment. PPRT was good for organ stabilization but has not been effective for bone NETs.

Please answer the following:
1. Where was the tumor primary site; pancreas, small intestines, or ?
2. What type of imaging has been used especially for the skull findings
Many thanks

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rkklinger | @rkklinger | Dec 1 9:56am

1. Ron's first tumor in 1995 was found between the Illiem and bowel. When having a colonoscopy, the doctor saw a shadow and sent him to a surgeon. The surgeon was shocked to find a tumor. He had 1/3 of his colon removed. 7 of the 11 lymph nodes removed were malignant. It was 28 years before he was rediagnosed.
2. When rediagnosed, he had a biopsy, PET scan, Colonoscopy and CT scan as well as a Brain MRI. Since then he has had multiple CT scans, a couple of PET scans and 2 Brain MRIs.
PPRT has been discussed as something down the road. His last scans were in October and won't be having anything until late April 2026. I believe that there is a extremely small tumor in his bone.
Dealing with NETS is a journey. At times, it is difficult to stay positive. We are very thankful that he is doing as well as he is. Good luck to you and your wife.

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sophiarose | @sophiarose | Dec 2 6:15am
In reply to @markmark007 "My wife has been battling NETs since 2014; pancreas and small intestine; they have metastasized to..." + (show)
Profile picture for markmark007 @markmark007

My wife has been battling NETs since 2014; pancreas and small intestine; they have metastasized to bones and most recent imaging has shown several small skull lesions. We are getting second opinions for next treatment. PPRT was good for organ stabilization but has not been effective for bone NETs.

Please answer the following:
1. Where was the tumor primary site; pancreas, small intestines, or ?
2. What type of imaging has been used especially for the skull findings
Many thanks

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@markmark007
I did 4 rounds of PRRT last year
I am currently stable for 1 year now including my bone METs I also have some shrinkage

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robin5 | @robin5 | Dec 2 12:10pm

My husband has neuroendocrine pancreatic cancer . Diagnosed July of 2024. stage 3 grade 1. He gets lanreotide injections every 25 days. It has helped to maintain the tumor from growing. So far so good. Has not shrunken just maintained. Side effects sometimes gets stomach aches for days but that is getting better. Does have to watch for diabetes so uses dexcom. Out of pocket expenses.

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