Treatments for Carcinoids

Posted by Teresa, Volunteer Mentor @hopeful33250, Nov 8, 2016

@tresjur @gaylejean @gulzar @joannem @joanney @amyh2439 @lucci50 @derekd @lorettanebraska. Hi carcinoid folks. How is everyone doing? I would like to discuss treatments for carcinoids. Surgery seems to be the most common way of dealing with carcinoids. Please share, if you like, of surgery experiences. I have also heard of PRRT (I hope those are the right initials!) and I've heard about the injections of Sandostatin. Does anyone have any other information about treatments and how well they have worked? While there has been some discussion about the Sandostatin I have not heard much about the PRRT. Would anyone like to weigh on when these various treatments. If you have some information about when these different treatments are used and which seems to be most effective, please share with the group. I'm sure that we would all be interested in hearing your thoughts.

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

trish07 | @trish07 | Jun 10, 2023

I have had two surgeries for nets. The first was in my small intestine, so had a resection. The second there were net material outside the intestine. They removed that, but there are smaller tumours in the stomach lining which are inoperable. I have been on Sandostatin injections since last December. No problems with the injections and it has helped with the flushing, but still experimenting with my diet as I do get odd days with bad diarrhoea. I have found great information on line from the Cancer council here in Australia, and also from the UK and USA. Ps I havent heard of anyone losing their hair with Sandostatin .

alisonn | @alisonn | Jun 12, 2023

My brother had PRRT after having surgery and Octreotide injections every 28 days. The tumor growth continued. PRRT did not help him, unfortunately, but I believe it has helped many others.

splendrous | @splendrous | 6 days ago

In reply to @hopeful33250 "Hello @carolc66 and welcome to the NETs discussion group on Mayo Connect. While I've had three..." + (show)

Interested that octreotide was not prescribed for you. Seems like it is the norm. Would be interested in understanding your diagnosis. Would your surgeries able to remove all of the tumors and you had none left to treat and thus did not need octreotide. Thanks for sharing.