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Any one with Neuroendocrine tumors getting the shot once a month?

Neuroendocrine Tumors (NETs) | Last Active: Jun 24 2:03pm | Replies (168)
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@annie12345

Thank you yes I don't drink much at all just if I go out for a meal,i have a strict diet as i suffer with acid reflux an bloating don't know if its anything to do with this.Did you ever smoke at all? I'm 44 an I did when I was 18 I had asthma as a child but as I got older its completely gone an I don't get any shortness of breath really,I'm quite active. I go to the gym an overall quite well.Its strange having something that doesn't really give any symptoms although the slightest pain or anything in my chest I overthink as I'm not sure of what to expect with lung nets.

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Zebra | @californiazebra | Jun 18 4:10pm

@annie12345
Typical carcinoids are not from smoking (smokers get atypical carcinoids). Nothing you did. My brother even had the more serious NSCLC in his 40s that smokers get even though he never smoked, was thin, fit and otherwise healthy. Stuff happens. I have also had asthma my whole life but it’s only an issue when I am allergic to something or sick. I still have to take prednisone every time I get sick to calm down my lungs.

It sounds like you’re in pretty good shape. I know what you mean about random pains. I also am in treatment for recurrent breast cancer in addition to the lung NETs and DIPNECH. Anyone with cancer that has a random pain always wonders if that’s the cancer spreading. My lung NETs are painless and after 30+ years of slowly growing have never spread outside my lungs. The greatest concern for me with over 50 nodules is displacing healthy tissue, airway obstruction, etc. which is already the case. Yours will be even more manageable with few nodules and no DIPNECH. Enjoy your life because you’re going to be around for a long, long time! We are lucky to have this rare type of lung cancer and not the common kind.

I talked to one lady who had one typical carcinoid the size of a tennis ball at 70. They removed that lung lobe and at 80 she had never had another issue, just yearly CT scans.

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