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

What daily pill will he be taking?

My husband has been getting Lanreotide injections for 2 1/2 years after a)having surgery to remove carcinoid tumor in intestine in 2005 and b) small tumors registering in Dec 2022. Only recently did markers change through a number of other issues. While he was very uncomfortable with the monthly injections, the time our oncologist (same surgeon who removed tumor so long ago) has spent reassuring him to get out and live helped. Now, with an increase in chromagranin, he's recommending a change to daily pill. Since this is Carcinoid syndrome, various small slow growing tumors in widely different places, radiation and surgery have not been suggested.

That sounds intense its good that you can enjoy the summer an hopefully the fall🙂🙏yes I'm wondering if they are maybe watching this 2.7 one to see if it gets bigger then may remove it with surgery like you mentioned that lady with the tennis size one.Im just relying on Gods good grace to give me a miracle an get me the right treatment hopefully not chemo🙏

Thank you its all so new to me all these medical terms😀because I'm in the UK it's hard to know what treatment is available to me without it costing thousands ! I guess its different in the US ? I'm thinking they can't be to worried about this nodule otherwise they surely would be thinking of doing something asap.Yes I got the impression that because I have nodules in both my lungs they couldn't do surgery they did mention it was a possibility but then the last conversation I had they were very vague.😒

@annie12345
My largest was 2.6 cm and they destroyed it with microwave ablation 4 years ago and no regrowth. Surgical removal is the standard treatment but that’s not an option for me due to the number of nodules in all lobes. I will have two more troublesome nodules destroyed with cryoablation in September. I told him I wanted to enjoy my summer first. He said that’s fine because they are slow growing so we can walk not run in my case.

No one has ever mentioned chemo for my lung NETs so definitely get a second opinion from a NETs team before ever going that route. It is not treated the same way as common lung cancer. I like conservative treatment to preserve quality of life.

PRRT (google it) is targeted radiation thru an IV but you need to have somatostatin receptors and I don’t based on my DOTATATE scan. That seems to be more commonly used with GI NETs. Has anyone reading this had PRRT for typical lung NETs? I think it’s a pretty rough treatment.

You’re in my prayers as well.

That's amazing ! I feel very blessed an encouraged by this,The largest nodule in my lung is 2.7 mm,one consultant talked about removing it if it gets bigger which I would prefer,then the last appointment she said maybe chemotherapy which I wouldn't want personally as my mum had cancer of the stomach an had chemo I don't think I could go through it.Then another consultant said ppr if iv got that right? I'm not even sure what that is targeted treatment? but that's in the future if it does get bigger.Im sure DIPNECH has been mentioned on one of my scans ! Gosh it's all so confusing but its definitely multiple lung nodules in both lungs an typical nets.I hope your doing well with the breast cancer side of things you have been through it.Your in my prayers 🙏

@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.

Love your positive and focused mindset - makes a great deal of sense to be seeking versus avoiding. My MENS1 began with kidney stones and parathyroid removal (x3) the last one was taken from the neck area and placed in my left forearm - very cool huh? Kept an eye on the Ca levels and Pth levels and low and behold they found NETS not only parathyroid but pituitary then pancreas lesions.... removal of all the offending organs (pancreas, gall bladder and spleen) I and my pump/CGM system are rather care free. PET scan last month found a NET carcinoid so the beat goes on.