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

@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.

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.

I know what you mean! I wouldn't take any nutritional advice expect from a dietician. A pharmacist can tell you about drug interactions. But on a purely personal level, I do what I enjoy! I'm 71, diagnosed with a rare breast cancer almost three years ago. My basic life style was healthy, and I decided not to get stricter about anything. People talk about quality of life and for me that is about enjoying my world and the people in it. I take my meds, I see my doctors, and I do what I enjoy whenever possible. I think it is fine to make positive changes, but I am not adding any strict lifestyle regimes (although I do know folks who have benefitted--just a personal approach). I've also found it all easier to manage than initially. Have good vacation!

Ok thank you I'm not a big drinker at all just now an again I like a glass of wine🤗I eat pretty well to,you hear all these things you should an shouldn't be doing it gets a bit overwhelming.

Hi Annie. I don’t recall reading anything about alcohol and cancer but since I don’t ever drink alcohol it’s not something I have researched or paid attention to. Maybe others will comment. Good nutrition in general is important and be sure alcohol isn’t an issue with any meds you take.

Hi Annie!
My husband gets an injection every month and has been since the beginning of 2024. The only side effect he has is pretty significant “gas” pains. I will say that over the counter Gasx has become his best friend. Taken a few minutes before meals really helps to keep this issue under control. You are definitely not alone on this journey. I have found this support group to be wonderful, and both uplifting and encouraging. I know you will also. ❤️🙏🏻

Hi thanks so much I already feel much love an support from people on here,silly question to ask but I'm going on hoilday next week an I don't drink alcohol much apart from red wine with a meal but I'm skeptical about drinking any alcohol as iv heard it can make the cancer grow.I know you may not know the answer obviously no one does but I wanted someone else's point of view on this.Thank you

Thank you so much I have read these an its helped me alot to understand more,I really don't suffer with symptoms,bloating/ acid reflux but not sure if that's anything to do with this.Thanks again for replying

Annie, I’m with you on wanting to hear from people who have the same conditions because it’s a different perspective than the provider’s point of view. I like to hear real stories especially with the less common disorders. You came to the right place for support.

Thank you for your reply its encouraging to hear about your journey.Yes mine are typical nets to I think I may of mentioned that,I will have a look at those posts.It was my consultant who said only 5% of people have lung nets.Thank you so much for all this information I'm very new to all this still learning ..its took me all this time to look for some support as I didn't think I needed it,but it definitely helps to hear other people's stories that are going through the same.