Anyone dealing with Carcinoid NETs with Diabetes?

@vinnie694, I'm tagging a few members who also have experience with diabetes and carcinoid tumors like @dbamos1945 @joannem @carcinoid23462 @spartan and @mir123.

Vinnie, are you referring to type 2 diabetes? What oral medication are you taking?

Yes type 2, currently on Jardiance. I met with a endocrinologist at Mayo, earlier this month but her specialty was thyroid.. She made a copy of my glucose log and was going to review my NET records with the diabetes specialist. That was on March 21st I haven’t heard anything yet.

Hi Vinnie694!
We share this issue. I’ve been diabetic for many yrs with pretty good glucose control, but very difficult. Last Spring I received a Dexcom G6 Continuous Glucose Monitor that gives me 24/7 info on my glucose numbers rising, remaining stable or falling. When rising I go for a walk or exercise, when falling I eat (protein with carbs works best) to regulate the glucose numbers to a stable level.
I was diagnosed with Carcinoid Neuroendocrine Tumor last October and began SomatulineDepot injections every 28 days. Immediately I noticed erratic glucose readings and it has been difficult to control ever sense. The CGM has been a lifesaver! This is documented as a side-effect of treatment. My A1c number has risen but trying my best to keep it under 7.0.
I hope this relieves you of any guilt and helps you acknowledge that we can only do our best each day- I consider ourselves lucky to be offered a treatment to hopefully control this ugly Carcinoid disease. Best of life to you…

Good morning all,
I have NET, pancreas to liver. I don’t have diabetes but the numerous tumors on the liver caused my glucose to drop dangerously low last summer. The chemo has shrunk the tumors and glucose levels have been in the normal range.
One trick used last year was Corn Starch mixed into what i was eating stabilized my Glucose. I mixed it in chocolate pudding.
It’s not a cure but helps keep you from getting spikes it your Glucose levels.
Good luck

Thank you so much for sharing your experiences. I am hoping someone from the diabetic dept at Mayo will respond this week.. It’s been getting increasingly more difficult to get Dr.s appointments, The nurse practitioner at my primary care office has been treating me, but is not totally sure of how to handle diabetes with NETs.. one day at a time. And the best of life to you..

I also have NET pancreas to liver and type 2 diabetes. I am taking CAPTEM. I stopped taking my diabetes meds other than insulin. My PA doctor said my chemo meds should stabilize everything else or the diabetes meds would just be rendered somewhat useless. My blood sugar is always between 80 and 93. It is kind of amazing.

Vinnie what Mayo are you working with?

Mayo Jacksonville Florida.

Ok. Covid and a revolving door of PCP, which Mayo is mine, took me a long time to be diagnosed. It took over 2 years and 80 pounds. Fi nally, the doctor performing a colonoscopy told my wife that I had cancer. I got tests and scans, the one that shows NETs, and saw Dr. Sonbol in a week. The colonoscopy Dr. Championed my cause. I started CAPTEM two weeks later in 9/22. Been on it ever since.

I am at Mayo Phoenix oops