Pancreatic NETs: Looking to connect with anyone with insulinoma

I appreciate Your follow up. Unfortunately I was disregarded by the oncologist, the only thing that was offered are iron infusions and that is despite elevated 5 HIAA and glucagon and Pancreastatin in the past. The one said he would never order Pancreastatin. I said, they were done and they are elevated, shouldn't we do something about it? I also have hypoglycemia 30min -1 hour after eating. All my fasting glucose is fine but I wasn't able to fast for more then 16 hrs. I have asked continuously for 72hr fast, including the oncologist today and it was denied. My liver has close if not over 20 tumors that I being disregarded as cysts. Bile ducts in and out of liver are enlarging and beyond EUS nothing was done. No Neuroendocrine clinic will take me without liver biopsy and doctors refuse to do one. I have increasing GI issues and exhaustion beyond the point of managing this illness. Who ordered 72hr fast for You? Was it done at the hospital? Thank you,

Just posted what I’m taking

To all,
I finish my 12th chemo yesterday I think the dr wanted to keep going but I need a break, I’m week and hungry. Going back for scans in 2 months.
I’ve been asked what I’ve been taking.
I take a 28 day shot in my butt called Octreotide.
Chemo days it Oxaliplatin, Levcovorin, dexamethasone [steroid], fluorouracil.
Afinitor [everolimus] is a daily pill I took at first to control my suger. With in a few weeks after starting chemo I stopped taking it. Also, had to fight with the insurance company for that one, the pills are about $6,000 a month but the hospital got it approved.
Happy to here some of you are here after 5 years. When I look on line the studies I fine say up to 10 years but don’t mention how old the subjects are.
I’ve asked my doctor about targeted radiation and I always get a flat no. But if they can kill a few big tumors on the surface, why not? I know they will not be able to get them all, but it seems they grow like weeds. Can they be zapped when the surface? I don’t know, just a guy trying to stay above ground.

Bot T.
Last round

I do use cornstarch. I mix it with ginger tea
I also eat an extend bar before bed to try and hold my sugars thru the night

Also at Dana Farber

Hats off to links for 16 rounds of chemo.
I'm taking a break at 12, I'm starving, I can't eat

Message to all,
if your having trouble with your suger, glucose, corn starch helps to regulate your levels.
I mixed it with chocolate pudding, made it edible, really couldn't taste it.
I imagine any flavor will work.
Bob T.
Lastround

Hello
I have had about 16 rounds of chemo..happening every two weeks.
The primary tumor is pancreatic and I have lesions on the liver. My scans thus far have shown
shrinkage so the plan is to continue on the chemo...Foflox..
Yes the eating is hard....but having the insusolinoma I have to try to maintain the sugars..so I have to force it..soups are good,easy to eat..but sometimes not enough protein.I do make some shakes,but that doesnt quite help the sugars. Yes the neuropathy is hard..but I dont want them to change the chemo so I try to just deal with it. As long as the chemo is working they will continue it. All they tell me is that there are other things but we are not there yet.
I do get quite nauseous especially after the chemo...so dealing with that and trying to keep my sugars up is quite challenging.Orignally they said no surgery....but I am hoping there are other procedures they might be able to do. I know some people who have had ablations and PRTT procedureds to help kill the lesions. Im hoping they will have a plan..for now this is it.Please dont hesitate to reach out with questions...open to hear about your journey..ps also at Dana Farber!
My best
Marlene

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