Absolutely open to sharing. I was diagnosed originally in 2020 after a 30 day bout with constant vomiting and about 30 pound weight loss. My gall bladder was removed first and did nothing to get rid of the symptoms. After 5 ER visits and Gall bladder removal I had an emergency exploratory and a surgeon found the tumor. Stage 4 and just about ate through my small intestine, I had a wonderful surgeon who did her best to get it all but it was already in my lymph nodes. In 2024 had a scan and tumors showed up in my ovaries. Scheduled a Hysterectomy and had tumors in both ovaries. Did another scan and found them just hanging out in my liver as if they were supposed to be here.
Currently on Lanreotide every three weeks and Xermelo for the diarrhea. Been on this schedule since the end of last year. Still struggle with fatigue ( baddddddddddd) and a little diarrhea but the Xermelo helps.
I liked having the CgA test. My doc said too many other things influence the levels in my system and that its just an indicator. I felt like I knew when tumors were acting up by that test Is it an expensive test to run