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A 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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I have just returned from my week at Mayo so I wanted to post a quick update for the group. The best news of the week is that we confirmed there is NO metastasis of the insulinomas to the liver. The only downside to the week is that the pancreas is still positive for at least one or more insulinoma tumors. After an endoscopic ultrasound the tumors are not visible for the purpose of ablation of the tumors. We met with the surgeon after the endoscopic ultrasound. Essentially we have 3 options: 1) medical management 2) ablation of the tumors via endoscopic ultrasound 3) total pancreatectomy (strongly not recommended). Since the tumors were not visible by EUS, we are really only left with medical management of the remaining tumor(s). A little disappointing there is not a "fix" at the end of all the procedures but I am very happy there is no metastasis. We are going to try and new medication to see if it helps. The journey does continue. . .
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@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?