Anyone have pancreatic neuroendocrine tumors with carcinoid syndrome?

Posted by fim @fim, Feb 16 2:06pm

I'm 87 years old and was recently diagnosed with a well-differentiated grade 1 pancreatic neuro-endocrine tumor, with widespread hypermetabolic disease. My PET scan showed extensive metastases involving liver and bone. I have carcinoid syndrome with persistent diarrhea, digestive pain, and weight loss. I've had two injections of lanreotide so far, with additional injections planned every 28 days. My oncologist has recommended & approved a specialized drug called Xermelo which might help with my digestive problems, but have only recently found a specialized pharmacy that has it, so I don't have the tablets yet.

I would welcome any information from anyone who has similar digestion challenges with carcinoid syndrome.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Feb 16 4:16pm

Hello @fim and welcome to the NETs support group on Mayo Clinic Connect. I see that you are looking to connect with others who have a similar diagnosis and have taken Xermelo. Here is a link to many of the posts mentioning Xermelo. I encourage you to read the posts and see what others are saying about this medication:
https://connect.mayoclinic.org/search/
As you are looking to connect with others who have a similar diagnosis, I would like to invite @dbamos1945, @vinnie694, and @tomrennie to this discussion so they can share their experiences with you.

Are the digestive problems the most troublesome symptoms you are having at this time?

fim | @fim | Feb 16 4:51pm

In reply to @hopeful33250 "Hello @fim and welcome to the NETs support group on Mayo Clinic Connect. I see that..." + (show)

@hopeful33250
Yes, absolutely.

vinnie694 | @vinnie694 | Feb 17 8:12am

Good morning I have NETS in my small bowels and Liver, also with carcinoid syndrome, diarrhea, and at least 25 hot flashes a day.. I also started with lanreotide, and after aprox. 3 months the symptoms
didn't change..My doctor switched me to Ocreotide and my diarrhea stopped, and so did my hot flashes. I do get a day or 2 of diarrhea for about 2 days after my monthly injection, and the cramping not as bad as it was a dose of Gas-ex seems to reduce the cramping for me..Hope you find the right solution!

Turkey, Volunteer Mentor | @tomrennie | Feb 17 9:04am

In reply to @fim "@hopeful33250 Yes, absolutely." + (show)

@fim I have a pancreatic neuroendocrine tumor with metastasis to the liver and bones. I do not get lanreotide shots nor do I take Xermelo. When I was diagnosed, I had cachexia. My pancreatic tumor was blocking some veins causing me a lot of digestive issues. Once the tumor decreased in size from chemo, my issues started to improve. Is there a treatment plan yet to help you manage the cancer?

fim | @fim | Feb 17 12:18pm

@tomrennie, I believe the lanreotide injections are the treatments, and they've seemed to help a great many people with this cancer. Only time will tell if they help me as well.