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Diagnosis Frustrated: How you were diagnosed with NETs?
Neuroendocrine Tumors (NETs) | Last Active: 7 hours ago | Replies (77)Comment receiving replies
@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.
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@californiazebra Goodness Cali, I am amazed that you have been through SO much. I have had several operations, some serious, but not that would case the amout of change in my body as you have had to go through. I can not imagine what just your diet must consist of, if it can so radically change your body chemistry. Has it been a method of trial and error, or did you have to go to a nutritionist? I am not a good eater. I would rather take a supplement and call it a day. I am trying to do better, but I confess, even my vegetables are in powder form that I add to a daily smoothie. That is one area I HAVE to do better in. It is also why I want my doctor to do baseline testing. You taking the shot gives me real hope. Also, wondering if your breast cancer had anything to do with you having NETs? Was that the primary tumor source? I'm assuming you had a gallbladder issue before taking the injections. (?) That has been one of my fears. My surgeon brushed that off with, "I'll merely remove your gallbladder if it becomes a problem." Sorry if I am asking too many questions. Answer only if you want to. I will not be offended. Thank you for responding. 🫶