Treatments for Carcinoids

Hi, I have a carcenoid tumor, inoperable, stage 4 cancer, in my Mesentery, it is in amoungst all the veins coming and going from the intestines. Some of the symptons are flushing, large volumes of gas, and diarrhea, pain is minimal. I get injections of Lanreotide 120mg every 28 days, this helps with the flushing, and it is keeping the tumor from growing, it has grown 1mm in 6 years. trying to find a diet that will help with the gas and diarrhea. In 2016 they cut out 8 inches of my small intestine to remove a benign carcenoid tumor, and on inspecting my intestines found the one in my mesentery.

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.

Thank you , I don’t have any planned surgeries and I pray that these injections work to prevent me from having any and by the way it’s a sin how much these injections cost I looked at my bill and it’s 17K a shot my insurance pays 16k

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

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?

Hello @char1962,

You mentioned that you are getting injections. Are the injections you mentioned, PRRT treatments, or are they the monthly octreotide injections?

They are the monthly octreotide injections

My husband had to have a routine physical to renew his life insurance. Bad news, he no longer has life insurance. Good news, found the tumor very early. He’ll go to a thoracic surgeon who specializes in NETs in October to figure out our next steps. 🤞🙏

I too have NET alongside my colon. So far the doctor is not suggesting any surgery. I am having a nuclear test done this week. Then I think that I am going to be having injections.
I have a question for those of you who are having the octreotide injections, my vanity is getting the best of me, but have you lost your hair?

Hello @carolc66 and welcome to the NETs discussion group on Mayo Connect. While I've had three surgeries for NETs, I have never needed to take the octreotide injections. However, we do have other members like @char1962 who has taken octreotide injections, and perhaps she can answer the question about hair loss.

If you care to share more when was the NET discovered? Were you having symptoms prior to the diagnosis?