1. < Neuroendocrine Tumors (NETs)

First scan after 3 months of lanreotidec

Posted by susan481 @susan481, Jun 9 11:28am

My partner has pancreatic NET, grade 2 stage 4 w metastases in liver - she is having first post diagnosis scan after 3 months lanreotide. Seeing oncologist in 1 week. Advice?

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kevinmonroemi | @kevinmonroemi | Jun 9 12:50pm

Sometimes it works to stabilize tumor growth sometimes it doesn’t! I too have pancreatic primary metatastic to the liver grade 2 7% ki67 fairly large tumor in head of pancreas about 25 in the liver they continued to grow. I also have functioning tumors hormone level stabilized for a few months they then continued to escalate to very high levels Gastrin went from 800 to 2,000 I just had number 50 the lanreotide has controlled symptoms very well hopefully it works for your partner I’ve read plenty of positive reports. I went on to have radiation that worked very well! There’s not much you can do except hope for the best we are all so different. I now have tumors in the spine I was diagnosed in May 2021

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lindabees | @lindabees | 6 days ago

I wouldn't expect significant change other than stability. Lanreotide doesn't usually shrink tumors but it can stabilize them, especially with a pnet. If you're looking for shrinkage, there are better options, some of which can work even better with lanreotide. Is she seeing a net specialist?

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susan481 | @susan481 | 5 days ago

THANKS for kindly answering

Yes seeing a NET specialist … and will try to control my expectations!

Take carec

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susan481 | @susan481 | 5 days ago
In reply to @kevinmonroemi "Sometimes it works to stabilize tumor growth sometimes it doesn’t! I too have pancreatic primary metatastic..." + (show)
@kevinmonroemi

Sometimes it works to stabilize tumor growth sometimes it doesn’t! I too have pancreatic primary metatastic to the liver grade 2 7% ki67 fairly large tumor in head of pancreas about 25 in the liver they continued to grow. I also have functioning tumors hormone level stabilized for a few months they then continued to escalate to very high levels Gastrin went from 800 to 2,000 I just had number 50 the lanreotide has controlled symptoms very well hopefully it works for your partner I’ve read plenty of positive reports. I went on to have radiation that worked very well! There’s not much you can do except hope for the best we are all so different. I now have tumors in the spine I was diagnosed in May 2021

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Thanks for the detailed response. Appreciate it. Sounds like the start for you and my partner g similar. Hope there are ways to address your spine…

Hope is the/a key

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1 reply
susan481 | @susan481 | 3 days ago
In reply to @susan481 "Thanks for the detailed response. Appreciate it. Sounds like the start for you and my partner..." + (show)
@susan481

Thanks for the detailed response. Appreciate it. Sounds like the start for you and my partner g similar. Hope there are ways to address your spine…

Hope is the/a key

Jump to this post

Update: interval progression with growth in both lobes of liver, growth of pancreatic mass, probably colon, and sine impact on circulatory vessels … not what we hoped. Thanks for the support

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1 reply
lindabees | @lindabees | 2 days ago
In reply to @susan481 "Update: interval progression with growth in both lobes of liver, growth of pancreatic mass, probably colon,..." + (show)
@susan481

Update: interval progression with growth in both lobes of liver, growth of pancreatic mass, probably colon, and sine impact on circulatory vessels … not what we hoped. Thanks for the support

Jump to this post

I know how disappointing that is. Fortunately there are so many great treatments options. I'm sure the specialist will find the best one. I hope for the very best outcome!

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sophiarose | @sophiarose | 23 hours ago

My Journey of what I have done
Liver resection
Lanreotide
Octreotide
Liver embolizations both sides
Afinitor (Everolimus)
PRRT
Octreotide
The only treatment so far to stop the growth and some shrinkage is the PRRT
I have an unknown probably gut primary that has spread to my spine liver lymphatic system pelvis rib cage and who knows
where else
It tears you down but you just have to keep piecing yourself together
Never give up then it wins
I wish all of us the best

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1 reply
susan481 | @susan481 | 22 hours ago
In reply to @sophiarose "My Journey of what I have done Liver resection Lanreotide Octreotide Liver embolizations both sides Afinitor..." + (show)
@sophiarose

My Journey of what I have done
Liver resection
Lanreotide
Octreotide
Liver embolizations both sides
Afinitor (Everolimus)
PRRT
Octreotide
The only treatment so far to stop the growth and some shrinkage is the PRRT
I have an unknown probably gut primary that has spread to my spine liver lymphatic system pelvis rib cage and who knows
where else
It tears you down but you just have to keep piecing yourself together
Never give up then it wins
I wish all of us the best

Jump to this post

Thanks - step by step!

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