1. < Neuroendocrine Tumors (NETs)
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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.

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Teresa, Volunteer Mentor | @hopeful33250 | Jul 14 11:51am
In reply to @dbmenger "I had two lantreotide shots. They controlled my hot flashes and made me feel human but..." + (show)
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I had two lantreotide shots. They controlled my hot flashes and made me feel human but only the next day. After that I felt horrible and it exacerbated my IBS. My Chromogranin A level doubled to 603 before the shots and halved after them. I have not had any discernible tumors anywhere so shall I continue with maybe octrotide in an attempt to feel human?

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I appreciate you sharing your experience with lantreotid shots, @dbmenger. You said that you have "...no discernible tumors anywhere." As I don't recall your NETs history, I'm wondering if the tumors were removed surgically.

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Teresa, Volunteer Mentor | @hopeful33250 | Jul 15 7:07am
In reply to @splendrous "https://www.google.com/search?q=octreotide+not+containing+the+growth+of+neuroendocrine+cancer&rlz=1C1UEAD_enUS1116US1116&oq=octreotide+not+containing+the+growth+of+neuroendocrine+cancer&gs_lcrp=EgZjaHJvbWUyBggAEEUYOTIHCAEQIRiPAjIHCAIQIRiPAtIBCTIzODIzajBqN6gCALACAA&sourceid=chrome&ie=UTF-8 Above is the source. I have read that it is not 100% effective with everyone..." + (show)
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https://www.google.com/search?q=octreotide+not+containing+the+growth+of+neuroendocrine+cancer&rlz=1C1UEAD_enUS1116US1116&oq=octreotide+not+containing+the+growth+of+neuroendocrine+cancer&gs_lcrp=EgZjaHJvbWUyBggAEEUYOTIHCAEQIRiPAjIHCAIQIRiPAtIBCTIzODIzajBqN6gCALACAA&sourceid=chrome&ie=UTF-8
Above is the source. I have read that it is not 100% effective with everyone in controlling growth. Many people still have growth of their tumors. I am in that category. I am seeing my doctors this month and will be asking them if we need to change direction since the tumors are continuing to grow while I am receiving the shot. I had very minor growth in the three months before I started taking the shot.

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Hello @splendrous,

I look forward to hearing from you after you see your medical team this month. I hope that you get some helpful information on how to proceed. Will you post an update?

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mballinger51 | @mballinger51 | Jul 15 11:28pm

I am having the once per month injection of Octreotide (sp?). The drug has calmed my hot flashes and diarrhea. It also has kept the mets to my liver in check and not growing. I think this is working for me. This drug gave me no side affects which is onderful.

Good luck with your NET treatment.

Michelle

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Teresa, Volunteer Mentor | @hopeful33250 | Jul 16 10:47am
In reply to @perryleeoneal "Hi - PNet diagnosis in September of ‘20 …. (4) total tumors …. Three in pancreas..." + (show)
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Hi - PNet diagnosis in September of ‘20 …. (4) total tumors …. Three in pancreas (head 3cm, body 3mm, tail 3mm, lymph node 4cm) …. Whipple in January ‘21, removed head of pancreas, all lymph nodes at pancreas and did “normal” Whipple stuff …. Scans and blood work every 6 months, metastasized to liver and another lymph nodes 3 years later, (4) total tumors again …. (3) on liver all @ 3cm now, lymph node tumor is @ 4.5 cm …. Started me on the Lanreotide injections once a month @ 6 months ago but last set of scans in April showed it to be not effective in slowing down the growth of the tumors have another set of scans in August …. If injections are still not working as intended then will probably get more aggressive ie. (PRRT, ablation or resection) All my care is being taken care of at The MD Anderson Cancer Center in Houston …. Perry

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Hello @perryleeoneal and welcome to Connect. I appreciate you sharing your journey with NETs. From your post, it looks like you were diagnosed about 5 years ago. A lot of people, like me, had no symptoms, but the NETs were found incidentally. Was this true for you?

I look forward to hearing from you again and knowing how you are feeling since your surgery and if you are having any problems with blood sugar.

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cliffy | @cliffy | Jul 20 11:54am

I have an injection of 125ml Lanreotide every 4 weeks, to stablise my NET in my Pancreas. I discovered that it had been there since 2018 but missed by Radiologists, now in metasised in my liver, 3 tiny tumours. Professor could not operate as my aerobic levels too low due to failed hip Replacement and too high a risk op.

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cliffy | @cliffy | Jul 20 11:56am
In reply to @bluebelle "Hi! I have been receiving Octreotide injections once a month for about a year now. For..." + (show)
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Hi! I have been receiving Octreotide injections once a month for about a year now. For me, the first few months caused some fatigue but it’s hard to say if it is from the shots or the cancer itself. I am stage 4 and my cancer has metastasized to my liver. I recently finished 4 rounds of Lutathera radiation in conjunction with the shots. I haven’t really noticed any ill effects of the shots personally and I will be receiving them every month for the rest of my life. I hope this helps:) Prayers and well wishes for you…

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Did the Radiotherapy reduce the liver Mets?

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cliffy | @cliffy | Jul 20 12:01pm
In reply to @vinnie694 "After being on Ocreotide for almost 2 years a few of my tumors were still growing,..." + (show)
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After being on Ocreotide for almost 2 years a few of my tumors were still growing, after my PRRT (Lutathera) treatments they were shrinking..

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I was informed by U.K. Professor that Lutathera is not approved by NICE in U.K.?

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jlsgt | @jlsgt | Jul 20 2:13pm
In reply to @cliffy "I was informed by U.K. Professor that Lutathera is not approved by NICE in U.K.?" + (show)
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I was informed by U.K. Professor that Lutathera is not approved by NICE in U.K.?

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I do know it is a very expensive treatment. Could that be the reason?

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Sherry | @bluebelle | Jul 21 8:58am
In reply to @cliffy "Did the Radiotherapy reduce the liver Mets?" + (show)
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Did the Radiotherapy reduce the liver Mets?

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Yes!!! My last PET scan (a few weeks ago) showed ‘no new spread or tumor growth’ and a couple of tumors on my liver actually shrank! One shrank so much that it was no longer detectable on the scan. We were very pleased with the results. My oncologist said that I am considered to be in partial remission. I’ll take that news and run with it:) My motto remains…one day at a time! Wishing you well…❤️

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Turkey, Volunteer Mentor | @tomrennie | Jul 21 10:00am
In reply to @bluebelle "Yes!!! My last PET scan (a few weeks ago) showed ‘no new spread or tumor growth’..." + (show)
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Yes!!! My last PET scan (a few weeks ago) showed ‘no new spread or tumor growth’ and a couple of tumors on my liver actually shrank! One shrank so much that it was no longer detectable on the scan. We were very pleased with the results. My oncologist said that I am considered to be in partial remission. I’ll take that news and run with it:) My motto remains…one day at a time! Wishing you well…❤️

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Congratulations to you. Hearing that news had to feel great?

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