Hi , i was diagnosed with this in March 2025 originally i went to the Dr’s for being out of breath, flushing was so bad my nose & skin was a deep purple colour very embarrassing. Was tired all the time no energy really bad pains in stomach & back no appetite upset stomach to where i would be pooing 7/8 times a day lost 3 1/2 stone in weight . Dr eventually listened to my heart said i had a murmur so was sent for test & came back that i needed both my right heart valves replaced. They said there was an underline reason & it took a year to find the carcinoid which is in my small bowel & lots of nets in liver . Im currently having lanreotide injections every 3 weeks as they say its inoperable its working its not spread or got any bigger but still in a lot of pain around tummy & lower back . Its now Dec 25 & im 3 weeks post op for major heart surgery just recovering at home & looking forward to a lovely Christmas with family & friends . Thanks for letting me waffle on Merry Christmas
