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NET - Insulinoma
Hello to All,
I am joining this group from the Diabetes/Endocrine group. In July 2015 I was diagnosed with 2 insulinomas - both removed surgically at DUMC in NC. The diagnostic work-up included a 5 day hospital stay (72 hour fast + complications) and the surgery was an 11 day hospital stay (typical stay for a Whipple procedure). About 3 months post surgery, I started having recurrent hypoglycemia symptoms very similar to my pre-op symptoms. Insulinomas are very difficult to diagnose and locate and so far they have not been able to locate a new tumor but do suspect there is regrowth of an old tumor or growth of a new one. That is what will bring me to Mayo next week. Anyone been through insulinoma testing at Mayo? Hopeful to be starting down a path to possibly find a resolution of daily hypoglycemia symptoms but nervous because I have walked down this path once already. Glad to see the new group on NETs. Thanks.
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Thank you all!
@hopeful33250 yes, I will be admitted tomorrow evening.
@marilyn2525 I was given magic number as 49. I dropped to 48 by 9:00am after overnight fast and then they concluded the 72 hour fast test.
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1 ReactionThat is amazing...I’m so happy you didn’t need to go through the long 72hrs. I was done at noon. Now to get that tumor out.
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1 ReactionHello @preeti
I've been thinking about you and hoping that your surgery went well. I know it will be a few days before you feel up to posting, but I'm looking forward to hearing from you when you are able.
Hoping your surgery went well! Speedy recovery!
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1 ReactionHi Everyone! @ahtaylor, @hopeful33250, @marilyn2525, @amya
My surgery went well yesterday! Pre-op preparations started at 6:30am and surgery was done by 10:30am. I was in recovery room for 2 hours before they moved me back to my room. They found the tumor where expected on surface of the head of the pancreas and were able to successfully enucleate! Pain meds are helping me to deal with the pain. Today I felt much better and walked 3-4 times with podium. Had nice hot veg broth all liquid for dinner! Hopefully tomorrow I won’t be gassy as much and will be able to eat something.
All nurses here are excellent and go above and beyond to provide the necessary care. Will post more updates in coming days.
I can’t thank you all enough for the support and encouragement. I was in dual minds about rescheduling this appointment due to Covid but the advises given here really helped me to make a decision and move forward.
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2 ReactionsHello @preeti,
So happy to hear from you! I am glad to hear that your surgery was successful but also happy that your experience with the Mayo staff was so positive. I'm glad that the encouragement that you received here on Connect helped you to make a decision to go forward with the travel arrangements as well as the surgery.
I'll continue to think (and pray) for you as you recover. I'm looking forward to your posts over the next few weeks.
Preeti So glad to hear your surgery went well and your experience at Mayo has been a great one! I have consistently had great care every time I have been. Keep walking and getting better! Best wishes for a speedy recovery.
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1 ReactionA quick update for the group as I don't think I have posted one in a while. My insulinoma journey continues. . . I will be turning to Mayo the first week in April for the continued search insulinoma(s) that have been identified in a Calcium Stimulation test but continue to hide from view in imaging. A full week of testing this time for a more aggressive approach to try to locate the tumor(s). The plan includes Dotatate PET/CT, supervised fast, Calcium Stimulation test and a visit with Dr. Vella (endocrinologist) and Dr. MacKenzie (surgeon). After a fairly severe hypoglycemia episode in November 2019, I started Lanreotide (Somatostatin analog) to assist with the hypoglycemia. After 8 months, I had an allergic reaction to the medication. After taking a couple of months off any medication, I was started on a second medication in the same drug class (Octreotide) and after 5 months had a severe allergic reaction. Needless to say, I am no longer on medication for the hypoglycemia. I am eagerly but anxiously anticipating my upcoming appointments. The plan is to see if the tumor(s) that has been hiding since my surgery in 2017 can be found as well as to see if there is any metastasis outside the pancreas and when/if found if there are surgical options. Certainly has been a journey and the journey continues! So glad to have Mayo Clinic as part of the journey - the care is outstanding and I know I am in great hands!
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2 Reactions@ahtaylor
I appreciate you letting us know about your return trip to Mayo Clinic. Will this be your first Dotatate PET/CT?
Will you post again with an update?
This will actually be my 2nd Dotatate PET/CT. I had one when I first came to Mayo in January 2017 prior to my surgery in March 2017. I am a frequent patient at Mayo - we return on average about every 6 months. Again, I will say the care at Mayo is consistently outstanding! Very grateful this has become part of my journey. Yes, I will provide an update once I have more information. Thanks!
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