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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
@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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@nannybb
Oh, and the only followup for the DIPNECH/NETs has been CT scans at various intervals depending on what they see with nodules, obstruction, etc. I do see an endocrinologist regarding the diabetes. My synthroid dose for hypothyroidism did not change after starting octreotide. Stable. The nodules have stayed pretty stable in size but I have had some new obstruction in the past year. Not really noticeable to me, but it shows up on scans. I’d much rather do an in office injection every 28 days than at home 3x day.
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@nannybb
Since I’ve been taking octreotide injections for 5 years now, I’m a little fuzzy on details like that. Because I had already been in treatment for recurrent breast cancer for months before I saw the NETs team, I had plenty of CTs, MRIs, PET scans and bloodwork on file already. I’ve also been treated for hypothyroidism for 37 years. I had a gallbladder full of large stones before the injections. The most significant side effect for me has been blood sugar spikes after eating. It shoot’s up in an hour then back down an hour later. I can’t take the diabetes meds since I have a rare demyelinating neuropathy so I’ve actually improved my health habits to fix organically. Octreotide has been amazing for me fixing my respiratory issues. I will never stop it so long as it works and I’m someone that says no to most meds because of adverse reactions. I hope it works as well for you.