1. < Neuroendocrine Tumors (NETs)

Lanreotide Question

Posted by greenmountainzebra @greenmountainzebra, Feb 3 2:57pm

I was surprised this morning by an unexpected call from my surgical oncologist. I saw him mid-January and after another MRI (I had one in September as well), he called to say that he brought my most recent MRI to the tumor board. I had planned not to think about my next MRI until July when I’d go back for another six-month scan. I have no change or growth in very tiny spots that could be liver Mets. They showing up on certain MRI phases but not others. My doctor said he was asked to make a referral to an oncologist so they could talk to me about Lanreotide. I’ve been NED for 4 years after major surgery in 2021. I need to have the conversation with the oncologist and I’m grateful for more opinions but I don’t know why I would start Lanreotide before my next scan when I’ve been stable and have no symptoms. Thoughts? Thanks!

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greenmountainzebra | @greenmountainzebra | Feb 15 10:31am

Thank you. I have an appointment 3/11.

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ricki8 | @ricki8 | Feb 15 5:23pm
In reply to @greenmountainzebra "I’m delighted to hear you’re on the upswing. That sounds like a lot to go through...." + (show)
@greenmountainzebra

I’m delighted to hear you’re on the upswing. That sounds like a lot to go through. Thanks for the information and support. Take good care!

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Being positive is part of the treatment. This is not the average cancer, so, trying out what works best for you is important. I have an Oncology team - that helps. Good luck to us all!

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ricki8 | @ricki8 | Feb 15 5:26pm

I don't think taking Lanreotide would hurt and it's better to get going with this treatment as it takes a bit to take hold. Best of luck!

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ricki8 | @ricki8 | Feb 15 5:34pm
In reply to @greenmountainzebra "Thank you. I’m curious if you had surgery to remove the liver Mets and the primary..." + (show)
@greenmountainzebra

Thank you. I’m curious if you had surgery to remove the liver Mets and the primary and then began the Lanreotide? Interesting about the PRRT and growth in your liver. Thanks again.

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I only had a biopsy on my liver. I have many tumors of all sizes on my liver. I chose Histotripsy to reduce some, ablation to stop the blood supply for others and Lenvima may help to reduce as well as help with symptoms (similar to Lanreotide). The primary was ignored (for now). I think at this point it's a 'watch and wait' situation.

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