I haven’t posted in awhile (such an original blog line) but there hasn’t been a huge reason to do so. No news is good news. Things are indeed stable for me on the carcinoid front. In January I had my routine MRIs and lab work. The imaging showed that my tumors are stable and that there is no new growth or spread. I always love to hear that news! It’s so odd though, even after doing it for so many years, living life in these 6-month cycles then waiting to hear what the imaging shows.
My labs were in a solid range. My 24-hour urine 5-HIAA result was 19.1, which though technically elevated is a great number for me. I stayed off my PPIs for a few weeks and got a ChromograninA reading of 5.8 which is within normal. The only marker that was really elevated was Serotonin at 1142. That’s quite high, even compared to my typical results. The plan is to increase my monthly Sandostatin LAR from 30mg back up to 40mg to see if that helps pull the reading back down. I was on the 40mg dosage prior to PRRT. The only real downside is that it means two painful injections instead of one each round. I know I can’t complain because many of you are on much higher dosages.
I continue to get messages from other patients and caregivers or family members through this site, and am always happy to talk or just listen. I appreciate being able to help in whatever small way I can.