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← Return to Treatments for Carcinoids
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HI, I'm new to this site. In 2016 I had a bowell blockage that turned out to be a carcenoid tumor in my small intestine, it was benign, my surgeon opened me up from my pubic hair line to my solar plexus (25) staples, and romoved 8 inches of my small intestine. while I was on the operating table they removed my intestines and found another carcenoid tumor in my mesentery, that is stage 4 cancer, and it is inoperable, as it is in amoungst the vascular area of the mesentery. I have been getting chemo since 2016, first they used octreotide, but it did not effect the carcenoid syndrome of flushing, so they started giving me lanreotide, and it helps with the flushing, still have all the other carcenoid symptoms, and am trying to adapt with diet adjustments. lost 35 lbs. but I am still this side of the grass so all is well. I am still working on diet changes, any suggestions will be greatfully appreciated, thanks for listening.
Replies to "HI, I'm new to this site. In 2016 I had a bowell blockage that turned out..."
Hello @browndog and welcome to Mayo Clinic Connect. I can understand your concern about diet. I have had three surgeries for carcinoids of the upper digestive tract (duodenal bulb) and I do understand that it takes some time to find the right eating plan.
Mayo Clinic offers a virtual support group for NETs patients. It meets, via Zoom, on the first Thursday of each month. There are often guest speakers from Mayo's medical team and there is also an opportunity to talk with others who have NETs and get valuable input on their journey with this disorder. I would recommend that you join the next group that meets on the first Thursday of October at 5:30 p.m. EST. Watch for the registration information when it posts on Connect.
I was helped a great deal by getting a referral to a registered hospital dietician. Also, I've found that using some liquid nutrition drinks can be very helpful. I generally use one in the morning. I often add fruit to the drink and put it in a blender. It will add a lot of valuable vitamins and fiber in an easy-to-digest form.
Have you consulted with a registered dietician at your hospital?
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Amen this rare disease can be very challenging but like you say we are still here and that’s a blessing I live my life very purposeful now and don’t take anything for granted