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What is the best treatment for carcinoid tumor in mesentery?
I am going to have to seek a treatment; what do you suggest
1tumor.
I have a carcinoid tumor in the Centrist part of my body and it is inoperable by my surgeon.
If you have such a tumor please tell me what you are doing.
Mine is growing real slow and I have not done anything will check in June of this year to see if it is still growing slowly. Do not know if left alone will it massify.
If you suggest certain treatments and throw out the treatment, define what the medicine is going to do. They have suggested a shot once a month and I see people getting a shot once a month with different medications.
treatment one
PRRT ( peptide receptor radionuclide therapy) is a radiation treatment.. I was on Ocreotide injections for over a year, it did stop the flushing, and the spread of the tumors, but a few of existing tumors were still growing. The PRRT treatments were to stop the ones from growing.. I will be receiving my third treatment at the end of the month, and the last one in May. I will also be getting a scan prior to the next treatment . The PRRT treatment I am receiving is Lutathera. There is a lot of info on line..
treatment two
Researchers are also looking at a new type of radiation, called radiopharmaceuticals. This treatment uses a drug that is attracted to carcinoid tumors. This drug is then attached to a radioactive substance and injected into the body. Once the drug reaches the tumor, it gives off radiation that kills the tumor cells.
treatments three and four
My husband took Octreotide shots for about 18 months, side effects slightly looser stools & then started breaking out into face & neck rashes so he was switched to Lanreotide. He has been fine with this new shot . We have been fighting this since 2021
My personal experience is prrt is a four hour long session finishing up with a landreotide injection. An advanced treatment prrt, and landreotide is to keep the net at bay. There’s plenty of information available online. I have just finished prrt and still on landreotide. Both were tolerable for me and I hear different for everyone.
I am also one of the lucky ones with carcinoid syndrome.. started with Lanreotide which didn’t help had ab 15-20 episodes a day, Dr. switched me to ocreotide over a year ago, within hours the hot flashes subsided, and have been under control since then.. I pretty much can eat anything, I do try and stay away from carbs, and sugar but that is to prevent me from going on diabetes meds.. have a wonderful weekend!
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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thank you ; i am opting for radiation. Chemo pill must stay out of the sun, If radiation does not work will probably be the chemo pilll
On Saturday, November 15, 2025 at 01:43:10 PM EST, Mayo Clinic Connect < nf+0710bd53+84439088@n1.hubapplication.com> wrote:
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| Comment posted by @debbie4la on discussion "I have a new scan am not doing aythng for it, continues to grow".
Continued tumor growth while taking lanreotide injections, so was switched to oral chemo, Everolimus. CT scan this week showed reduction in all tumor sizes. Side effects have been minimal. Recommend talking to your Dr about it.
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1 ReactionNot sure where your primary is. Mine is located in Duedenum and metastasis to liver, lymph nodes etc. I took Sandostatin injections ever 28 days for 12 years. This arrested the growth and spread until last year. I am now going through PRRT treatment with positive results after two rounds.
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1 Reaction@panorman3 The shots do sting because of size of needle. Messaging the area helps greatly. I also put a solonpas heat pack on for 8 hours after the shot which helps greatly.
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1 Reaction@tjstaufr in the mesentery middle of stomach and jnoperable.
Going to use radiation
be inprayer
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1 Reaction@tjstaufr i have some cream to put on about one hour before the shot and it reduces the hurt
to almost nothing
I read many, many of the inputs on this site and what people do, the decisions they make. One thing I would like to know on most is what they eat, what is their diet. I, and this is a belief, think you can't eat an unrestricted diet and handle NETs. I have had my carcinoids discovered , and the discovery was not of the primary, for 23 and a half years. I run a very restricted diet which I won't go into here except to say that I never eat out, I never ,ever eat fast food. One has no idea what is in them in terms of preservatives, spices, or whatever including most are very greasy or refined sugar filled. Unhealthy even if you don't have NETs.
Secondly I wish I knew the ages of the people when they make some decisions. What I would do or subject myself to treatment wise 20 years ago and now are totally different things.
Maybe this is mere curiosity, but also perhaps looking for a bit of guidance as to if I should reconsider some of my choices with my own NETs. After 23 and a half years and being in good shape still it is hard to feel one has made many mistakes even when not following Doctors' suggestions or advice.