1. < Neuroendocrine Tumors (NETs)

Pancreatic NETs: Looking to connect with anyone with insulinoma

Posted by links @links, Jan 19, 2023

Looking to connect with anyone who has an insulinoma. My tumor presents in the pancrease. I currently have chemotherapy bi weekly since July 2022. This is a rare combination and have struggled with regulating my sugars and hoping to meet someone else with a similar diagnosis.

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

lastround | @lastround | Feb 7, 2023
In reply to @margaret12 "I appreciate Your follow up. Unfortunately I was disregarded by the oncologist, the only thing that..." + (show)
@margaret12

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,

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What hospital are you in?

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ahtaylor | @ahtaylor | Feb 7, 2023
In reply to @margaret12 "I appreciate Your follow up. Unfortunately I was disregarded by the oncologist, the only thing that..." + (show)
@margaret12

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,

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For both of the 72 hour fasts, the endocrinologist ordered. The first was
done in the hospital in NC. The second was done at Mayo and was started in
the clinic with conversion to hospital if not hypoglycemic by close of
clinic.
Calcium stimulation was another very helpful test- it will confirm presence
or absence of insulinoma and localize to the region of the pancreas as well
as can be done with the liver. The calcium is used to stimulate the tumors
to produce insulin and results are found in the insulin levels that are
drawn every 20 seconds after injection. This is all done through femoral
arterial and venous lines. This procedure was done at Mayo.
Hope this is helpful. I am happy to continue to answer questions as I truly
understand how challenging this can all be!
Take care.

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margaret12 | @margaret12 | Feb 7, 2023
In reply to @ahtaylor "Welcome and thanks, Margaret for the questions! To respond to your questions: My PET/CTs have been..." + (show)
@ahtaylor

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!

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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,

REPLY
2 replies
lastround | @lastround | Feb 7, 2023
In reply to @hopeful33250 "@lastround Hello Bob and welcome to the NETs discussion on Mayo Connect. This is a discussion..." + (show)
@hopeful33250

@lastround
Hello Bob and welcome to the NETs discussion on Mayo Connect. This is a discussion group that deals specifically with insulinoma and I thought you might find it helpful to meet the members here who also have this type of NET. I understand from your previous post that your glucose is now under control as the chemo has shrunk the tumors. That must be rewarding to have some relief.

You mentioned that you have been having chemotherapy. If you are comfortable doing so, what type of chemo are you having? Have you had many side effects?

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Just posted what I’m taking

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lastround | @lastround | Feb 7, 2023

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

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links | @links | Feb 6, 2023

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

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lastround | @lastround | Feb 6, 2023
In reply to @lastround "Hats off to links for 16 rounds of chemo. I'm taking a break at 12, I'm..." + (show)
@lastround

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

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Also at Dana Farber

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lastround | @lastround | Feb 6, 2023
In reply to @links "Hello I have had about 16 rounds of chemo..happening every two weeks. The primary tumor is..." + (show)
@links

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

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

REPLY
1 reply
lastround | @lastround | Feb 6, 2023

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

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links | @links | Feb 6, 2023
In reply to @lastround "Hi Marlene [and all], I also live in Massachusetts and am going to Dana Farber. As..." + (show)
@lastround

Hi Marlene [and all],

I also live in Massachusetts and am going to Dana Farber.
As I said getting chemo now [12th round Monday] hopefully the last for a while. Have been satisfied with them but they don’t seem to have and answers for what’s next other than a maintenance program.
I’m looking for a cure, as we all are.
I’m not sure exactly what kind if of chemo I’m receiving but do know it is similar to what you receive if you had Collin cancer.
I’m having trouble eating. Metallic taste in my mouth and no appetite,I’ve lost 80 pounds in 6 months, so there is the up side to being a fat guy.
The only thing that’s eatable is fish chowder for some reason, so good thing we live in Boston area.
The biggest side effects of the chemo has been Neuropathy [pins and needles feeling] in my hands and feet. It’s becoming painful in my feet. But luckily no sickness.
I’m not sure what it was called but at hospital number 2 they did give me 2 injections in my liver to block the blood flow to the tumors but it did nothing. [for me anyway]
My wife is more familiar with the exact treatments.

Bob T.

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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

REPLY
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