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Diagnosis Frustrated: How you were diagnosed with NETs?
Neuroendocrine Tumors (NETs) | Last Active: 16 hours ago | Replies (77)Comment receiving replies
@nannybb I just wanted to share my experience with the Octreotide injections. I have been getting them every 28 days for just over a year. They immediately stopped my diarrhea symptoms from NET. I feel better than I’ve felt in 10 years. I have no side effects except the soreness where I get the injection for a few days.
I also had to have open heart surgery to replace my right heart valve because NET had destroyed it. I knew something wasn’t right because I was so out of breath when going up stairs. Now I have a cow valve and doing much better.
I hope this helps. Wishing you the best.
Replies to "@nannybb I just wanted to share my experience with the Octreotide injections. I have been getting..."
@apain Hi and welcome to Mayo Connect. I am glad that the Octreotide injections are working. Congrats to you. What was your specific diagnosis that resulted in your right heart valve being destroyed? I think it is amazing that a cow valve replacement helped.
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@apain Thank you so much for your response. I have had the opposite of diarrhea. I know the shot can go either way in that department. I've opted for the short acting 3 times a day shot, just to see how I react yo it. If they can get my pain under control and I don't get a bad reaction, I really need to go back to work. I'm really glad you are feeling much better. Thanks again.