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Neuroendocrine Tumor - no treatment plan method
Neuroendocrine Tumors (NETs) | Last Active: 21 hours ago | Replies (133)Comment receiving replies
Your story is similar to mine. During my second resection surgery for NETs, the surgeon removed my gallbladder, and it was found to be full of stones. So, the decision to remove the gallbladder if you have the resection is probably a good idea.
I'm wondering about your kidney stones. Has it been determined that your kidney stones are a result of hyperparathyroidism? Has the parathyroid hormone level been checked? The combination of hypoparathyroidism and NETs can indicate a condition called MEN1. If you don't already know the answer to this question, it might be a good topic to bring up at your appointment with the endocrinologist this week.
Keep learning and posting your questions. I'd enjoy hearing from you after your appointment with the endocrinologist. Will you post again after your appointment?
Replies to "@dadcue Your story is similar to mine. During my second resection surgery for NETs, the surgeon..."
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@hopeful33250
Interesting thought about hyperparathyroidism. I have kidney stones because of a high uric acid level. Nobody seems to know why my uric acid level was so high. It is normal now because I'm taking allopurinol for gout.
https://pmc.ncbi.nlm.nih.gov/articles/PMC12300645/
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I took Prednisone for decades until I was able to taper off prednisone. My problem with chronic inflammation was attributed to a genetic disorder called HLA-B27 syndrome. Don't answer this --- I surely can't have more than one genetic disorder?
https://www.ncbi.nlm.nih.gov/books/NBK551523/
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I have never worried about my hormones but I have multiple hormone imbalances. The hormone imbalances are attributed to being on Prednisone for such a long time. I have multiple autoimmune conditions so that was why I needed Prednisone for so long. I was able to taper off Prednisone about 5 years ago when an IL-6 inhibitor was tried. That cytokine apparently plays a role in the development NETs.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11480914/.
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I'm just tired of everything. When I was able to taper off Prednisone, I thought the worst part was over. Now I'm beginning to feel like the worst is being saved for last. There is a geneticist on the multidisciplinary NET team. I wonder if I will be seeing them after the NET endocrinologist.
This will be the second endocrinologist I see. The first one was treating me for metabolic syndrome caused by long term Prednisone use. The first endocrinologist referred me to the NET specialist endocrinologist. The first endocrinologist might manage my NET treatment after receiving recommendations from the NET endocrinologist.
Before surgery happens I need to visit with my rheumatologist because the surgeon says my IL-6 inhibitor called Actemra (tocilizumab) needs to be stopped for a month before surgery and a month after surgery. I don't see how that can happen. The surgeon said prednisone would be a worse medication to be on prior to NET surgery.
All my problems seem to come in multiples and they have a tendency to multiply!