Pancreatic NETs: Looking to connect with anyone with insulinoma

Links,
Sounds like you have what I have.
Mine started in my Pancreas and is in my liver now.
Got diagnosed in May of 2022.
Like I've said I'm on my third hospital. The first 2 fiddled around for months with my glucose numbers. With no results. I used to say I was on the 12 year boy diet, candy's, cakes, etc. Just kidding, But that didn't work after a few months.
Hospital number 2 told me no to worry, liver failure is painless, the next day I got a call to see if I wanted to participate in an end of life study. I told them I'm no buy a shovel yet and NO .
Next call was to hospital number 3 that put me on chemo that week. Actually felt great for about a month, that as the treatment continued, no so much.
I received treatment every 2 weeks and came home with a bag of chemo that runs for 46 hours. I have a Port so we disconnect at home and bring it in the next time we go in.
I just finished my 12th round, 6 months.
If you're sugers are hard to control, it's in your liver. Don't wait. I think I was diagnosed to late.
Bob T.
Lastround

I've had MRI'S and CT scans (5) with contrasting.
Had my latest Friday my 12th chemo was today .
Tumors are shrinking, but still have some fairly large ones on my liver, they never talk about my Pancreas, not the biggest problem.
If there having trouble controlling your suger (glucose) it's your liver. I spent the month of June in the hospital until I started chemo. My suger would drop into the 40's and got to the point where I couldn't get the sugar up to normal, above 70.
Now I'm at 90 to 100 and steady.
Chemo is no fun but it worked for me to shrink the tumors. Is I said in the past I have over a dozen. I asked about Target Radiation but Dr said no.
Bob T.
Lastround

Marlene, I removed your personal email address. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.

However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.

Welcome and thanks, Margaret for the questions! To respond to your questions:

My PET/CTs have been with dotate. I have not had one with the contrast you mentioned.

I don't have confirmed liver mets, the areas on my liver are being monitored for possible metastasis. However, for the most part they have been stable to very slow enlargement over time.

I utilize glucose tablets primarily to bring my blood sugar back up. Occasionally, I will also need OJ in addition to the glucose tablets. My hypoglycemia mostly occurs after meals (within 30-45 minutes) and with exercise. Only occasionally do I have fasting hypoglycemia. The presentation made my diagnosis a bit more challenging as it is not a common presentation of insulinomas.

I have done the 72 hour fast a couple of times for diagnostic purposes and then some modified fasts as well as mixed meal tests for evaluation of the behavior of the tumors after they were confirmed to be present. The first one I had that was diagnostic, my blood sugar dropped into the 40s at about 40 hours. Do you have particular questions about the 72 hour fast? My confirmed insulinomas have all been functional.

Have you ever done a Calcium Stimulation test? Are you a current Mayo patient or considering care at Mayo? Looking foward to hearing more from you and thanks again for sending the message! Take care!

I'm seeing oncologist tomorrow, no treatment, Im being mostly ignored even though MRI shows progression of illness

Hello @margaret12

You are asking some good questions. I would like to invite some of our members like @ahtaylor @links and @lastround to share their experiences with you.

What type of scans have you had so far? What is your medical team currently suggesting to control the hypoglycemia?

Do any of You had 11C-5-hydroxy-tryptophan PETCT or know if Your facilities offer it. What was done for Your hypoglycemia and what helped. Did you have functioning or non functioning insulinoma? How fast were the liver mets multiplying/enlarging? Did anyone have 72hr fast test
Thank You,
Margaret

Hi
I am happy to engage a conversation on my personal email if you would like!
My primary tumor is in my pancreas with lesions on my liver.
Happy to let you know what I have been treated with and going thru!
Marlene

Bob,
To provide some additional information. . . I have had 2 surgeries - a modified whipple in NC in 2015 and a distal pancreatectomy/splenectomy in 2017 at Mayo - in those two surgeries, there were 11 total tumors that were either removed or ablated. After the second surgery in 2017, hypoglycemia persisted, and it was discovered through a Calcium Stimulation test that there was at least one if not more tumors still in the pancreas. Up until 11/2022, the tumor(s) could not be seen on imaging due to small size. There are 2 very small areas (5mm or smaller) now visible on CT that are possible insulinomas in the pancreas, as well as a couple of areas on the liver that are indeterminate but possible insulinomas. Due to their size, location and the extensive previous surgeries, the pancreatic tumors are currently deemed inoperable. Chemo and radiation have not been part of the plan of care due to the size of the tumors and the inability to monitor if the tumors are shrinking. Thankfully, the desensitization to the octreotide is helping keep significant allergic reactions from occurring and the medication is quite effective in creating a significant decrease in hypoglycemia episodes. I continue to go to Mayo clinic every 6 months and the care is excellent. I feel in very good hands in Rochester. Wishing you the best in your continued journey. Hope to hear from you soon. Take care!

No radiation so far. The remaining pancreatic tumors are inoperable at this point so medication management is my only option.