1. < Neuroendocrine Tumors (NETs)

I have 3 nueroendocrine tumors in my left lung

Posted by woundedwarrior1969 @woundedwarrior1969, Feb 17, 2024

After all the radiation, my oncologists recommend 30 radiations and numerous related ct scans. I wonder if these tumors having been there, one the size of an avacado, maybe 50 yrs and staying in my lung, do I, at 75, want to endure something I may not feel physically able to handle.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

arleighna | @arleighna | 6 hours ago
In reply to @pavlina60 "Yes, I have elevated blood sugar and hair thinning as a side effect of Lanreotide treatment...." + (show)
@pavlina60

Yes, I have elevated blood sugar and hair thinning as a side effect of Lanreotide treatment. Still no meds for diabetes, but I take biotin (10K) for the hair.
Diagnosed with pNET in 12/22, had surgery 2/23, on Lanreotide (120mg/28days) since 4/23

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Thank you for answering. I'm only two shots in, but my blood sugar has been insane the last week. I've had my lobectomy, done the chemo, then the immunotherapy, and now the hormone therapy. But honestly I feel worse on the lanreotide than the immunotherapy. Do the side effects get better over time? The only thing that is better, I've had next to no flushing.

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pavlina60 | @pavlina60 | 5 hours ago
In reply to @arleighna "Thank you for answering. I'm only two shots in, but my blood sugar has been insane..." + (show)
@arleighna

Thank you for answering. I'm only two shots in, but my blood sugar has been insane the last week. I've had my lobectomy, done the chemo, then the immunotherapy, and now the hormone therapy. But honestly I feel worse on the lanreotide than the immunotherapy. Do the side effects get better over time? The only thing that is better, I've had next to no flushing.

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@arleighna - it gets better with time! My first 6 mo I was in bed for 2 days, nauseated. Now I get tired and slight headache on the day. I also take Zofran 30 min or so before injection. The day of the injection I eat light - crackers and swiss cheese.
Hang in there! There are benefits to Lanreotide!
I also take bitter melon and watch my carbs, and my glucose seems to stay stable (~130 in the morning)

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 5 hours ago
In reply to @margaret10 "Thanks for the tip re continuous glucose monitor. Actually, I don't have diabetic neuropathy. Don't even..." + (show)
@margaret10

Thanks for the tip re continuous glucose monitor. Actually, I don't have diabetic neuropathy. Don't even have pre-diabetes. My neuropathy seems to be caused by 2 mutant genes that in turn, cause mitochondrial dysfunction. My mitochondria seem to be getting destroyed due to an imbalance in control mechanisms that, when they're working properly, maintain the health and proper number of mitochondria in a cell. Mitochondria, when healthy, are the "power plants" of the cell, converting food to energy currency, ATP.
I appreciate the thought. I believe most neuropathic pain is caused by diabetes.

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Hello @margaret10

I am interested in your comments about mitochondria. I had some blood work at the University of Michigan (that was sent to the Mayo Clinic for testing), and the results indicate a strong possibility for my having a mitochondria muscular disorder. I now have an appointment with the genetics department at the University of Michigan to check further.

If you could share a bit about how your mitochondria disorder was determined, I would love to know more. Is it believed to be due to the NETs issue or something else?

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