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What tests should be part of a surveillance protocol for lung NETs?
Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (38)Comment receiving replies
@californiazebra
I too had a negative Dotatate with little to no uptake and was told I should have never been put on Lanreotide dose 120(4 months) because it wouldn’t work for me. 50%(?) hair loss extreme pain in hip/pelvis and more cancer growth and spread 😢. My original site is lung to liver spine skull and bone.
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@amyschwietz
I’m so sorry to hear what you’re dealing with. I’m sorry the lanreotide didn’t work for you and that your NETs has spread. Octreotide can still work and does for me thru other pathways. Causes diabetes and other issues but so much better than the chronic cough, mucus and shortness of breath I had for decades. I have fatigue, hair thinning, etc. but I’m also on meds for breast cancer and they all have similar side effects. Luckily, my lung NETs has stayed confined to my lungs all this time. I have typical carcinoids. Do you have the atypical more aggressive carcinoids that are more likely to spread? How are they treating you now? Do you have a NETs multidisciplinary team?