I was diagnosed with carcinoid of the small intestine in March, 2018 and had 10” of my intestine removed. The following year I had a blockage of my large intestine and they removed 11”. I started on Octreotide injections in April 2018. We started at 20mg. and eventually worked up to 30.
About 5 years ago after several breaks, I started Prolia shots. The first year or so was rough as I was having multiple UTIs. Then it just all calmed down and I have no side effects now. I’ve also had two rounds of PRRT (one at Mayo Phoenix and one four years later at UNM in Albuquerque. My scan in January showed no new tumors and no growth of the multiple ones scattered throughout my body.
My point is - I have considered this disease to be like a chronic condition that you manage as well as you can. Keep moving forward, get the best advice you can, Take care of yourself mentally and physically. Don’t let it dominate your life. And taking the treatment for the carcinoid and the osteopenia is a way of doing that. Good luck to you.