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Neuroendocrine Insulinoma: Is treatment different for this type?
Neuroendocrine Tumors (NETs) | Last Active: Mar 25, 2023 | Replies (12)Comment receiving replies
My husband has one tumor on his pancreas and “innumerable” lesions in his liver. They started the 5-FU chemo in early September along with a short series of everolimus. His sugars came under control and have stayed that way so far. He ended the chemo after 12 sessions but had to end the oxylaplatin after 10 due to severe neuropathy. We are two months out and maintaining with monthly injections of OCTREOTIDE. The chemo reduced the size of the tumors quite a bit. He goes next week for his 2 month scans and we are hopeful they are maintaining. My best to you. Keep fighting.
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Hi
I was diagnosed last July with an insulinoma,tumor in my pancreas and liver lesions. I am on round 19 of 5-FU chemo..I was on everolimus,but had some reactions to the combo and they felt the 5-FU was more important not to miss...so for now the everolimus is on hold(but said probably add down the line. I too have neuropathy,trying to deal with it as best as possible.
I wear a Dexcom system to monitor my sugars. I have them moderately under control.
They tend to go haywire sometimes when I get disconnected from the infusion.
They want to continue the chemo until such time as it plateaus. Last scan showed shrinkage so on to the next.Have not started OCTREOTIDE shots as of yet. The sugars are the hardest as my taste is terrible for most foods and I am not particularly hungry...the sugar monitoring demands eating to regulate them!
My best to all of you.