Anyone dealing with Carcinoid NETs with Diabetes?

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

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.

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.

@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?

I sent a message on the Portal March 27 th and again on April 1, I’m hoping to here something this week..

Is anyone dealing with diabetes and carcinoid tumor?
I have diabetes and a carcinoid tumor and my symptoms are fluid buildup in my legs. My face gets flush. I had severe stomach pain at times and I can’t seem to get any satisfactory answers from the oncologist. Does anyone have any suggestions on what might be done with the carcinoid tumor.

When were you diagnosed? I have no experience with this, but you’ll probably hear from those who have. Sending well wishes your way. I hope they can provide you answers real soon that can help the condition and your symptoms.

Welcome @keppi. I moved your question about carcinoid and diabetes to this exising discussion:
- Anyone dealing with Carcinoid NETs with Diabetes https://connect.mayoclinic.org/discussion/carcinoid-nets-with-diabetes/

I did this so that you can read previous posts and connect with members like @vinnie694 @tomrennie @dbamos1945 @californiazebra and others.

@keppi, did you have diabetes before the diagnosis of carcinoid tumor? What type of diabetes do you have?

I was diagnosed type 2 diabetes 2 years ago when I was diagnosed with carcinoid syndrome.. my primary care doctor prescribed medication, shortly after that I saw a diabetes specialist at Mayo, I did lose a few lbs after staying away from carbs and sugar, she took me off the meds and said to continue with the reduction of carbs and sugar and my A 1C dropped from 7.8 to 6.5.. so I’ve been trying to keep it under 7 with diet and exercise.. As for the hot flashes caused by the carcinoid tumors, I was getting the hot flashes in excess of 25 times a day. Started Lanreotide, after 2 months the flashes continued, Dr switched me to Ocreotide, within a day I wasn’t having any flashes..It’s been 2 years now and it’s still working.. hope things work out for you.

The carcinoid tumor was discovered about 4 years ago. Prior to this, I had lymphoma which has been in remission about 8 years. I have been a diabetic for almost 30 years.