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

Hello @annie12345,

I am glad that you found this forum. It will help you find support in your journey with lung NETs. Here is a link to many of the Connect discussion groups where lung NETs are mentioned:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Lung&pg=2. I would encourage you to read these posts to discover what other lung NET patients are saying about their diagnosis and treatment. I would especially like to invite @californiazebra to post with you, as she has had lung NETs for many years.

What is the most difficult symptom you are dealing with, @annie12345?

The pain is short or not bad if it’s done right! Medicare covers them if you are on it. It seem most people just get fatigued for a few days

I take the octreotide shot every 28 days. It has made such a difference in my respiratory symptoms it has been life changing and I’ll never stop taking it. My Medicare and Medigap coverages together pay for it 100%. The shot is not that bad and the manufacturer just started making the kit with a smaller needle so I didn’t even feel the last one.

@annie12345
After you read thru all the posts, let me know what questions you still have. My 50+ lung nodules were discovered in 2008 but based on respiratory symptoms I’ve had lung NETs and DIPNECH for at least 30 years. Mine are typical carcinoids. Very very slow growing. I’m doing very well and you will too. You stated a small percentage of people have NETs in their lungs. I’ve read about 25% of NETs patients have lung NETs. Based on all the stories I’ve read, I would rather have lung NETs than GI NETs. Hang in there. I think you’ll feel better after reading through all the posts. Oh, and after having it for decades it is still contained in my lungs and hasn’t spread outside the lungs. Amazing.

No. He has pnets. I know lung nets are a bit of different animal.
In addition to Mayo Connect, there are several Facebook groups dedicated to nets that may be helpful to you, including one strictly for lung nets. These groups have many international patients so perhaps you might find them helpful.

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.

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 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

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

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. ❤️🙏🏻