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Pancreatic neuroendocrine insulinoma

Neuroendocrine Tumors (NETs) | Last Active: Feb 10, 2023 | Replies (30)

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I am so grateful for your response to my post,and the possible connection that we may have with our stories.I have been under chemotherapy since July,2022.I was receiving 5FU infusions biweekly combined with 5mg daily of everolimous,but we had to stop the everolimous about 3 months ago because of some reactions and the infusions are far more important.
I have had 2 scans to date,both showing disease control and some shrinkage.The most pressing issue along the way is managing and dealing with the sugar levels. I do wear a Dexcom system to try and manage day and night.Oddly they found adding cornstarch to any liquid,like tea helps the levels. I am not on injections(yet).I know the net combination with the insulinoma is rare,but I am encouraged to hear that you have been managing for some time!
For me having a connection is important and hope you might feel the same...hearing positive responses,encouraging news and developing treatments is great!
I live in the Boston area,not sure where you are located.
I am interested to hear more of your story and happy to share mine.
I look forward to hearing from you...wherever you are located,there is another strong supporter right here!!
My best
Marlene
Happy to share my number if you would like!

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Replies to "I am so grateful for your response to my post,and the possible connection that we may..."

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.