Anyone dealing with Carcinoid NETs with Diabetes?

Posted by vinnie694 @vinnie694, Mar 18, 2023

I was diagnosed with Carcinoid Tumors Earlier this year, 2 weeks ago I was diagnosed with Diabetes. I’ve been pre-diabetic for a few years now and was told the hormones related to the Tumors can cause an increase in blood sugar. Is anyone dealing with diabetes and Carcinoid syndrome is oral medication working for you? Thanks…

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

vinnie694 | @vinnie694 | Apr 2, 2023

In reply to @tomrennie "I am at Mayo Phoenix oops" + (show)

I go for my third Lanreotide shot soon, .. is the CAPTEM working?

Turkey | @tomrennie | Apr 2, 2023

Yes it is. My three large tumors on my pancreas are about half the size in 7 months. My over 200 lesions on my liver have shrunk or have stablized to reduce in size. Each cycle takes about a month... 2 weeks on chemo pills and two weeks off. So, I am on my 8th cycle.

Turkey | @tomrennie | Apr 2, 2023

In reply to @tomrennie "Yes it is. My three large tumors on my pancreas are about half the size in..." + (show)

In three months, the head/tail tumor no longer blocked the main portal vein and my body started to process food better. The side effects started to decrease and the treatment started to become more tolerable and manageable. After losing 120 pounds, I was finally able to put some weight on and exercise a little.

Colleen Young, Connect Director | @colleenyoung | Apr 2, 2023

In reply to @vinnie694 "Thank you so much for sharing your experiences. I am hoping someone from the diabetic dept..." + (show)

@vinnie694, if you haven't heard from endocrinology at Mayo Clinic on Monday, I might suggest that you follow up. You can inquire through your patient portal (Patient Online Services). Do you use the portal?