Anyone have pancreatic neuroendocrine tumors with carcinoid syndrome?

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?

@hopeful33250
Yes, absolutely.

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!

@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?

@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.

@fim That is awesome. With a slow growing grade 1, hopefully the lanreotide injections will be all that you need. Please let us know how it goes. Ok?

I just started my treatment three weeks ago (ocreatide injections.) The digestive issues are getting worse- cramping, mucous discharge, very little soft stool. Any suggestions? I've started taking gas x daily and ducolaz once last week but that led to accidents and had to stay close to the bathroom.

I was fortunate that Gas X helped me for a while, I was then given a prescription for Creon which I haven't filled out yet..

@buffalogrammy, how are the digestive issues? Did you find something that helped?

@fim we didn't think mine was quite carcinoid (it was a non-functioning neuroendocrine tumor, measiring about 1cm, and still benign when it was removed in 2014).

BUT there used to be a group back then called "The Carcinoid Cancer Foundation, which is now called The Neuroendocrine Cancer Foundation, which has a LOT of really great resources!

The website is ncf . net without any spaces in between--or you can just google "Neuroendocrine Cancer Foundation" and you should be able to find them, too!

And they even have free webinar this upcoming week called, "Just Diagnosed With Neuroendocrine Cancer?" Which should offer some good tips for things to ask your doctors, where to start finding answers & support, etc!

Back whe they were "The Carcinoid Cancer Foundation, their logo used to be a Zebra, because Carcinoid "is the zebra, rather than a regular horse," in that old phrase, "When you hear hoofbeats, it's most likely a horse, not a zebra."

Regarding the digestive issues--do your dotors have you doing a "bland food diet" or a "BRAT-type" diet, or just eating "regular foods"?

Because when my pnet used to "get fussy" and block off my duct, i typically shifted over to a "bland food" diet.

That meant VERY low fat, to prevent the diarrhea & loose (stinky!), oily stools.

I'd eat lots of the traditional "BRAT Diet" items, Bananas, Applesauce, Rice, & Toast, along with saltines or Club/Ritz/Townhouse crackers, plain baked chicken (not fried/cooked with much oil, and just some dried herbs--no sauces!), roasted or steamed vegetables, like carrots, sweet potatoes without skin, baked potatoes (again no skin), mashed potatoes (no butter/gravy!), oatmeal, malt-o-meal, or cream of wheat (again, no butter added!), etc.

Things like the "Mediterraean Diet" foods, are solid, rice bowls--as long as the "sauces" used are lowfat, lean meats (chicken, fish, turkey, & eggs).

Stay away from high-fat foods, like butter, mayo, dressings, sauces, gravy, etc.

Lowfat yogurt, as it's tolerable is GREAT, and it can be used instead of sour cream to make sauces & dressings.

When i was dealing with a "fussy pancreas," i typically went to Jimmy John's, and bought 2-4 of their "day old breads," then cut them up, put 'em in a gallon ziplock in the fridge, and then i'd get some oscar-mayer type "sliced turkey" or "sliced chicken" and have a sandwich made of the chicken/turkey lunchmeat, maybe some tomatoes or shredded lettuce, pickles, mustard, and that bread.

It gave me "flavor" but was almost zero-fat, and i could eat it multiple days without getting bored.

I also did mashed potatoes with homemade "Cream of Chicken Soup" as the "gravy" using the old "US Land-Grant University Extension Service" recipe--the one i use can be found online on the k-state newsletters (University of Kansas) website, and i'll make another comment with it.

You can make Vegetable, Beef, and other flavors of soup, by substituting other powdered bullions!

Lowfat soups are also really great--and you can turn 'em into "gravy" with a cornstarch slurry, to eat with diced baked chicken, over rice or potatoes.

Basically, i learned from my Pancreas Specialist's nurses, that any time my pancreas got "fussy," the best thing to try was just that "low fat, easy to digest, high soluble fiber/low insoluble fiber" diet for a few weeks, until my pancreas "settled down" again.

Canned fruit, rather than fresh ones, frozen & canned veggies, or roasted in the oven until they were soft, not fresh & crispy, etc.

And then i could go back to "regular foods" slowly.

Although i also learned that too much fat in my diet in a short timeframe would tip my pancreas into a "fuss", and so did things like too much fast food & processed foods in tge span of 1-2 weeks.

"Slower" foods, which were lower in fat NEEDED to be mixed in heavily, if i was going to need to catch meals on the go!