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Diagnosis Frustrated: How you were diagnosed with NETs?
Neuroendocrine Tumors (NETs) | Last Active: 9 hours ago | Replies (78)Comment receiving replies
@sophiarose I see you are on Octreotide. Is it a once a month injection? Did you have irregular heart beats before taking the meds.? Does the diarrhea get better?
Replies to "@sophiarose I see you are on Octreotide. Is it a once a month injection? Did you..."
@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.
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@nannybb
I get an injection every 28 days
I don’t get irregular heartbeats from it
However I did get major irregular heartbeats from Everolimus and only took it for 9 weeks
I still get days of debilitating diarrhea but my diet definitely plays a role to that situation
There are NET cardiologist
Mount Sinai in New York has one
I hope this helps