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@californiazebra . thank you for getting back to me. I see that you have a lot of experience in the dip nech area since you have many which they say so do I, but they are all just in both lungs. They didn’t metastasize my pulmonologist had sent me for a PET scan after saying that my nodules were growing the last two years so I went for the PET scan. Ishowed that nothing metastasized and he said all the nodules look pretty much the same so he was putting it to rest that it wasn’t lung cancer and he felt that it was the dip nech so he sent me to a specialist to have a bronchoscopy and a biopsy and a biopsy show that one of my nodules that’s 2.1 cm came up malignant but the other two that they tested and the lymph node that they tested came up negative, but he did say I have several of them and felt that surgery is not an option as the main lung nodule is in the center of my lung and because I have many I will lose a lot of my lung so he feels that I should do these injections, which I am starting on Monday and he said will take it from there. I’m seeing throatic oncologist. He does specialize in neurodocrine tumors. I do think I’m going to go for a second opinion at Sloan Kettering because it’s a very good cancer hospital just to find out if they feel I’m doing the right thing. The injection I am starting is not the one your doing but very similar I was told. I’m 60 and had nodules for about 10 years but haven’t really grown until the last 2 years. I have had a chronic cough for years and also some wheezing but we always through it was like a asthma/copd . I am hoping there aren’t a lot of side effects and hoping this will work. My doctor hasn’t mention anything about ablations. Like I said, I am going to go for a second opinion, but I do wanna start these injections with this doctor because the second opinion may take a while to get an appointment so I figured I would get some kind of start.

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Replies to "@californiazebra . thank you for getting back to me. I see that you have a lot..."

@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.