Connect
← Return to New To NETS - Stage 4 / Grade 1
Discussion
New To NETS - Stage 4 / Grade 1
Neuroendocrine Tumors (NETs) | Last Active: Apr 25 6:09am | Replies (13)Comment receiving replies
Sorry to hear what you are going through! I have stage 4 grade 2 metatastic to the liver with functioning gastrinomas. I also had lanreotide as the first treatment it did control most of my symptoms however it did nothing to control tumor growth! It does effectively control them in some individuals. Keep your head up there are other treatments available. You didn’t say where you go or if you have a multidisciplinary team? You must have a net specialist. It sounds like you have a complex case I had chemo and sirt in my liver just had my 45 lanreotide shot it been almost 4 years I have been stable for 2 years when I am not they will go back to the toolbox and we will keep fighting! good luck and learn as much as you can so many good people sharing their stories here!
Replies to "Sorry to hear what you are going through! I have stage 4 grade 2 metatastic to..."
Hi Kevin, finally I come across someone with functional gastrinoma that I can consult or share.
May I know what is your symptoms?
I have high level of Gastrin of 750 with dull pain in stomach (tumor marker for Gastrinoma) & am on Esomeprazole morning & evening. However, my oncologist is not able to order any treatment as unable to locate the exact location in e liver (for biopsy) hence I have 3 monthly blood tests & MRI of the liver with contrast since July 2024. He believed it has metastasis to the liver from the pancreas (removed head of pancreas in 2020 Grade 1, Stage 1). GA68 PET scan is in conducive (as not lighted up).
How did u find out that it has metastases to liver?
Connect
Thank you so much for the response. You have no idea how nice it is to speak to someone that “gets” what you are going through. I currently have a NETs specialist at Mayo Jacksonville following me, along with a hematology oncologist at Cleveland Clinic (closer to home) who does my Lanreotide injections. They are also setting me up with an endocrinologist.
I will be praying for you and all of us on this forum that the amount of tools in the toolbox keep growing.