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DiscussionI am 75 and have carcinoid tumors NET in lungs
Neuroendocrine Tumors (NETs) | Last Active: 3 days ago | Replies (144)Comment receiving replies
Replies to "@californiazebra . thank you for getting back to me. I see that you have a lot..."
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@myboys02
So glad to hear you are going for a second opinion at Sloan Kettering. Smart move to be sure you have the right treatment plan for handling this. Glad you're starting the injections now. You're hearing some different things from what I was told and I'm being treated by the UCLA NETs team. I was told octreotide would slow growth and typical carcinoids are already slow growing so great. They did not think octreotide would shrink any nodules, just stabilize. There was no suggestion that it would make the cancer inactive. The ablation destroyed my largest carcinoid and made that one inactive.
I was also diagnosed with asthma my whole life. The chronic cough was also blamed on chemical sensitivity/allergies which I also have, but much less on the octreotide. The cough is gone so I hope lanreotide is the magic for you that octreotide has been for me. I have some side effects, but pros outweigh the cons by far. That chronic cough was life ruining and likely caused damage to my lungs. The octreotide even made me able to pet animals for the first time in my adult life without an allergic reaction.
How large were the other two nodules they biopsied? I'm less concerned with the carcinoid issue than the sheer volume of nodules taking up my lung space and causing various lung issues such as obstruction, air trapping, wall thickening, etc. Please keep us posted on how the lanreotide works for you and about any second opinion.