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Stage 4 Carcinoid tumor

Neuroendocrine Tumors (NETs) | Last Active: Mar 28, 2023 | Replies (30)

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@sophiarose

When I was diagnosed that my NET had come back 2 1/2 years after my liver resection
I was shocked!!! I had no symptoms!!! I was feeling great!!!
My oncologist told me I had to go on Lanreotide to slow down the growth of the tumors it hopefully shrink them
I had a very bad reaction to Lanreotide it gave me severe diarrhea and flashing to the point of sweat pouring off me from head to toes
I barely left my house and when I did I wore a diaper
I did 3 injections 1 every 28 days and since the oncologist insisted it wasn’t from the Lanreotide he put me on Creon which made me sicker I begged and he didn’t listen
I found a new doctor one who did listen
She put me on octreotide
So far I had 7 injections
1 every 28 days
My diarrhea is gone from the beginning and my flashing is still there but nowhere like it was
Neither drug worked on keeping the tumors from growing or multiplying so I just had a liver embolization done
Don’t know the outcome of that yet
I hope this help with giving some direction
I wish your husband all the best
This site is s great force of hope snd direction
Get him on board
Good luck

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Replies to "When I was diagnosed that my NET had come back 2 1/2 years after my liver..."

Hi,

I agree this site is beyond great. Since I joined am I more informed, Amazing that doctors don't share this information?