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Diagnosis Frustrated: How you were diagnosed with NETs?
Can you tell me how you were diagnosed? I have had several G68 pet scans, (nothing lighting up intensely), multiple endoscopy and they cannot find the tumor that is causing my problems (high CgA, high gastrin, severe carcinoid syndrome, stomach lining covered with neuroendocrine cells, etc) Until they can ‘find’ a tumor and biopsy it my only treatment is Octreotide every month. My GI doc says he knows I have nets but cannot find them! I’m so frustrated with being so sick and no diagnosis. Thank you for your time, I hope to find a solution soon
Renee
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@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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5 ReactionsI want to echo what some have mentioned in this discussion. I don't recommend only relying on a GI doctor or even some other doctor with some knowledge of NET. You must consider a NET Specialist, to get the best results in fighting NET. My wife was so lucky a CT for her back was read by her pain specialist, and he noticed many spots on her liver, so we saw the local oncologist immediately. He confirmed the NET diagnosis, but in his 40-year career, he had only seen 2 cases of NET. He immediately, referred us to a NET Specialist, that was part of a multi-disciplinary team, that took on my wife's case. She was stage 4, and it has been a long fight the past 3 years, but she is on a much better path. NET will sneak up on you; my wife had no symptoms once diagnosed. Now she has a great chance to live a full life, with our Team helping her managing it. You got this, we got this!
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8 Reactions@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.
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2 Reactions@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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2 Reactions@nannybb
I on Medicare they would only approve the long term my RX insurance wouldn’t approve the short term
I got diarrhea from the Lanreotide injections so I had to stop after 3 doses
I don’t get diarrhea from the octreotide injections
I do get diarrhea if I don’t watch what I eat
Yes my doctor did a baseline of an echocardiogram which I follow up every 6 months and I get bloods every 3 months but I think that will be extended to every 6 months as well
My gallbladder was removed when I had my liver resection done because the injections can effect it
I hope this information has helped
Best wishes
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2 Reactions@tomrennie I believe I was told the carcinoid hormones from my cancer destroyed the valve. There may have been more technical terms, but I seem to recall better when everything is put in layman’s terms.
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3 Reactions@californiazebra I remember you from this time last year. I see the date on your post, so I think I am correct. I don't remember people posting about DIPNECH or octreotide at the time. Not sure how I missed it. I'm next to positive my surgeon, who was working with my pulmonary Dr. does not know about either one of these. He told me to just come back every 3 months for scans, and let me go basically. My question to you is, did your doctor do a baseline blood work-up (thyroid, sugar levels, gallbladder ultrasound) or anything BEFORE starting the octreotide? It just seems like common sense to me since this medicine can cause some pretty bad side effects. Thanks
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1 Reaction@kim1965 So good to hear a positive report. I had no reason to think my "symptoms" of being out of breath, tired, and flushing on my face, were any thing but work related. I have a very physical job. My GP knew I had a spot on my lung, but it was not made known to me until it started to grow. I think both times it was seen on a bone scan for osteoporosis. That seems to be how these tumors are found, trying to diagnose for another malady. It is amazing she had stage 4 at the time of being diagnosed and is doing well. Hope she continues to get better and better. 💕
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3 Reactions@sophiarose Yes. Thank you so much for your response!
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2 Reactions@nannybb
Anytime
Best of luck
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2 Reactions