After a routine follow up CT scan two years after my initial diagnosis of Hodgkin’s Lymphoma, I had what the doctors were almost certain was a recurrence. After they did a biopsy on the lymph nodes near my pancreas, it turned out to be Malignant Insulinoma. After dealing with borderline, to high calcium all through treatment for the Hodgkin’s, things started to make sense to my Oncologist, who believed, at that point that I had MEN1. He then sent me to see a local endocrinologist who immediately referred me to Dr. Odorisio at the University of Iowa.
My Wife and I flew down to Iowa in November of 2007, where I was told I would need a Whipple. I returned to Iowa right after Christmas, and had my Whipple done on January 5th. I am now a diabetic following the surgery, and still have some episodic hypoglycemia, but not to the extent that I did prior to surgery. I also have stable disease, and have been stable ever since the surgery.
Because I have family and friends in Southern California, and I knew that Dr. Yeh at UCLA was very well regarded in the MEN1 community, I decided that it made financial and practical sense to continue my treatment there, with Dr. Odorisio’s approval. In 2009, Dr. Yeh performed the first parathyroidectomy, with forearm graft on me. I then, had to have a second surgery, as the last parathyroid was a bit elusive the first go around, in December of 2013. My calcium levels were in the normal ranges for the first time in who knows how long up until recently. So it looks like I’m looking at my third surgery here in the fairly near future, but at least it’s just the graft this time!
After the second surgery, I wanted to see what damage the high calcium was to my bones, and I wish I would have sooner, as I have severe osteoporosis at the ripe old age of 39.
As it turns out, I was the first person in our family to be properly diagnosed, but my father, uncle, and my grandfather all passed away seemingly from complications arising from MEN1. Both my brother, and one cousin also have MEN1 issues. So far, I’m the only one who had Insulinoma.
In 2009, I was also diagnosed with Melanoma, however that was able to be excised and I am considered cured of that as well. My dermatologist did say that he has heard of correlations between MEN1 and Melanoma, and seeing how my dad had it as well, I wouldn’t be surprised if that were true.
I continue to be followed closely by my local Oncologist, my Primary care physician, as well as my yearly to semi-yearly trips to UCLA.