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Any one with Neuroendocrine tumors getting the shot once a month?
Neuroendocrine Tumors (NETs) | Last Active: Aug 27, 2025 | Replies (215)Comment receiving replies
I have been having the monthly injections of Octreatide.
(Sp?) for about a year. It also helped with diarrhea and the hot flashes that were so HOT, HOTMAIL HOT!!
I have some nodes in my liver too and one near my inferior vena cava. These are all staying the same with no growth or new lesions. They won’t do surgery on the nodes in my liver because they are too small. Not sure on the one other one but I suspect for the same reason, too small. My scans have shown no growth on these nodes so I am living with the monthly injections and
“keeping the faith” that nothing is growing either new or current. What does your liver show?
Replies to "I have been having the monthly injections of Octreatide. (Sp?) for about a year. It also..."
Hello @mballinger51 and welcome to the NETs support group on Mayo Connect. I am so glad that you found this forum and have shared your experience. NETs is a rare cancer disorder and it a good thing to find others who are walking the same path. I am happy to hear that the monthly injections have lessened so many of your symptoms.
As you are new to the group, I look forward to getting to know you. Would you share a little about your diagnosis? For example, how long ago were your diagnosed, were the symptoms that you mentioned the ones that led to the diagnosis?
So at least one is an inch or more? Do u know the size when u found out? How long from the time u found out u had NET til u started injections? Do u have fast or slow growing? Thank you
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What are the sizes? I was told I wouldn't be started on a shot until one or more is 1 inch.