best procedure
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.
Centrist? Are you meaning Mesentery maybe?
So both you and your husband have Neuroendocrine cancer? What are the odds? You seem very knowledgeable about the treatments available. I can't really add to that. You also seem to be in good place as far as feeling good? Sometimes the best action is no action? Especially given how your doing currently.
My surgeon said my NETs was interoperable too. So did the next several surgeons actually. Finally got referred to one that helped me at the Rare Cancer Center, Metairie, LA. That surgery was 2 years ago. I'm on monthly Lanreotide shots right now. I can eat what I want, carbs included. 🙂 I'm also feeling pretty good. I want to have a symptom or two before I even think about another surgery though. Tough to get over. Best of luck to you.
Thanks for sharing. I am interested in the size of your tumors when you had surgery. Did the surgeons who said it was inoperable give a reason? Was the surgeon able to remove all the tumors? Do you have any tumors at this time. Thanks again.