What is the best treatment for carcinoid tumor in mesentery?

Posted by panorman3 @panorman3, May 17 9:25am

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!

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

Profile picture for debbie4la @debbie4la

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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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
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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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Profile picture for panorman3 @panorman3

I have had a new scan have not been doing anything to stop it except diet and exercise. I feel i must do more what do you recommend.
VASCULATURE, FLUID SURVEY, LYMPH NODES : No free fluid. A partially calcified mesenteric mass measures 4.9 x 3.1 cm on image 362 of series 8, previously 4.3 x 2.9 cm. A nodule immediately superior to this measures 1.2 x 1.2 cm on image 333, increased from 0.8 x 0.9 cm.

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Not 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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Profile picture for panorman3 @panorman3

does the shots have side effects which is less sever tje o or the l
I understand that the shots hurt

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@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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Profile picture for tjstaufr @tjstaufr

Not 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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@tjstaufr in the mesentery middle of stomach and jnoperable.
Going to use radiation
be inprayer

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