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Pancreatic neuroendocrine insulinoma
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.
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I'm so happy to meet you all having the same tumor here. I'm not brave to take the whipple surgery. I would love to hear your stories to share your treatments, thanks a lot
Surgery is scary but my quality if life is poor. Lack of energy and I can't do alot. I have to eat in the middle of the night. I have also gained alot of weight. Once they take it out I should be cured. The chance of cancer or recurrence is 10% if the get clean margins. I am looking at either a distal pancreatectomy or a central pancreatectomy to remove the tumor. They will decide once they go in
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1 ReactionThis morning I had low blood sugar syndrome again from driving. I have to stop driving n eat first. I already ate a peach n one avocado and some milk around 7am but I have low blood sugar syndrome around 8:44 am
It is very frustrating
It is. You need to add oat meal or whole grain toast to make it last.
You could try cornstarch mixed in boullion before bed or my husband liked it in pudding. His sugars are stable now but he was on everolimus for several months and that kept him stable also.
If the cancer has not metastasized and they are willing to do the surgery it is my understanding this is curable. My husbands traveled to his liver and now his bone. Don’t wait. My best to you.
Hi these two days I have light headache and 3-4 times diarrhea in the morning. I really worried about my pancreatic tumor. What is your experience about it ?
I have daily headaches and go to the bath room several times a day. My tumor is 1.5cm in size. The symptoms will get worse over time. I know the whippo is scary but on the insulinoma support group out of the uk on face book talks about people who had it with this condition all the time and they feel better than they have in years and have not become a diabetic. The recovery can be rough but you have to plan the long game
I'm located in NY and would you suggest any doctor near me ? I certainly don't want to be diabetic and hopefully to have a very gentle way to cure my tumor. 1.1 cm on my pancreas head
I have heard Memorial Sloan Kettering in NY is very good.