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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annie12345 | @annie12345 | Jun 20 1:05am

That sounds intense its good that you can enjoy the summer an hopefully the fall🙂🙏yes I'm wondering if they are maybe watching this 2.7 one to see if it gets bigger then may remove it with surgery like you mentioned that lady with the tennis size one.Im just relying on Gods good grace to give me a miracle an get me the right treatment hopefully not chemo🙏

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1 reply
Zebra | @californiazebra | Jun 20 5:31am
In reply to @annie12345 "That sounds intense its good that you can enjoy the summer an hopefully the fall🙂🙏yes I'm..." + (show)
@annie12345

That sounds intense its good that you can enjoy the summer an hopefully the fall🙂🙏yes I'm wondering if they are maybe watching this 2.7 one to see if it gets bigger then may remove it with surgery like you mentioned that lady with the tennis size one.Im just relying on Gods good grace to give me a miracle an get me the right treatment hopefully not chemo🙏

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Prayers for you. Just continue to be your own advocate and ask your providers lots of questions.

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docoltun | @docoltun | Jun 21 12:09pm

My husband has been getting Lanreotide injections for 2 1/2 years after a)having surgery to remove carcinoid tumor in intestine in 2005 and b) small tumors registering in Dec 2022. Only recently did markers change through a number of other issues. While he was very uncomfortable with the monthly injections, the time our oncologist (same surgeon who removed tumor so long ago) has spent reassuring him to get out and live helped. Now, with an increase in chromagranin, he's recommending a change to daily pill. Since this is Carcinoid syndrome, various small slow growing tumors in widely different places, radiation and surgery have not been suggested.

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2 replies
Mentor
Turkey, Volunteer Mentor | @tomrennie | Jun 21 3:51pm
In reply to @docoltun "My husband has been getting Lanreotide injections for 2 1/2 years after a)having surgery to remove..." + (show)
@docoltun

My husband has been getting Lanreotide injections for 2 1/2 years after a)having surgery to remove carcinoid tumor in intestine in 2005 and b) small tumors registering in Dec 2022. Only recently did markers change through a number of other issues. While he was very uncomfortable with the monthly injections, the time our oncologist (same surgeon who removed tumor so long ago) has spent reassuring him to get out and live helped. Now, with an increase in chromagranin, he's recommending a change to daily pill. Since this is Carcinoid syndrome, various small slow growing tumors in widely different places, radiation and surgery have not been suggested.

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What daily pill will he be taking?

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3 replies
amygirl | @amygirl | Jun 21 7:52pm
In reply to @tomrennie "What daily pill will he be taking?" + (show)
@tomrennie

What daily pill will he be taking?

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Chromagranin? Daily pill? Thank you

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1 reply
amygirl | @amygirl | Jun 21 8:04pm
In reply to @docoltun "My husband has been getting Lanreotide injections for 2 1/2 years after a)having surgery to remove..." + (show)
@docoltun

My husband has been getting Lanreotide injections for 2 1/2 years after a)having surgery to remove carcinoid tumor in intestine in 2005 and b) small tumors registering in Dec 2022. Only recently did markers change through a number of other issues. While he was very uncomfortable with the monthly injections, the time our oncologist (same surgeon who removed tumor so long ago) has spent reassuring him to get out and live helped. Now, with an increase in chromagranin, he's recommending a change to daily pill. Since this is Carcinoid syndrome, various small slow growing tumors in widely different places, radiation and surgery have not been suggested.

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What size is small? I was told no shots til at least 1 inch. What are markers? Thank you.

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1 reply
docoltun | @docoltun | 6 days ago
In reply to @amygirl "What size is small? I was told no shots til at least 1 inch. What are..." + (show)
@amygirl

What size is small? I was told no shots til at least 1 inch. What are markers? Thank you.

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Nothing that large....chromagranin is the blood marker. I'm NOT an oncologist. Could be because he had a large tumor removed (12 inches of intestine along with mass) some years ago. Get another medical opinion if you're concerned. These are large, nasty injections yet they kept growth down. Going for another nuclear body scan this month to see what's up.

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1 reply
docoltun | @docoltun | 6 days ago
In reply to @tomrennie "What daily pill will he be taking?" + (show)
@tomrennie

What daily pill will he be taking?

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Everolimus possibly. No word until after scan.

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1 reply
docoltun | @docoltun | 6 days ago
In reply to @amygirl "Chromagranin? Daily pill? Thank you" + (show)
@amygirl

Chromagranin? Daily pill? Thank you

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Size of lesions run from 3cm to 13 mm, still under an inch. Doc is recommending switch to Everolimus (pill form daily) from monthly injections.

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1 reply
amygirl | @amygirl | 6 days ago

Hmm wondering if different docters/clinics have different opinions. Was he having bad side effects if there under an inch? Are they slow or fast growing? Thank you

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