Pancreatic NETs: Looking to connect with anyone with insulinoma

HI @ahtaylor

I was thinking about you as well and wondering if you had the Hepatic Artery Embolization yet. If so, I'd love to hear from you.

Checking in to see how your surgery went and how you are feeling now? Hope all is well!

I hope all goes well on the 16th, @sshindle! Will you keep in touch?

My surgery is Auguat 16th. Thank you so much for the support and kind words! I wish you luck as well. Please update me on your progress!

Hi @ahtaylor,

I hope your surgery goes well and the hypoglycemia symptoms are reduced. Will you let me know how you are doing after your surgery?

When is your surgery? Or have you already had your surgery? If so, how did it go? Just thinking about you as I know you said you were scared. Either way hope all is well!
I am going to Mayo soon for a Hepatic Artery Embolization to get to the tumors in the liver and hopefully reduce hypoglycemia symptoms.
Keep us posted and best wishes!

I fortunately have been able to avoid surgery with capecitabine/temozolomide now just capecitabine for almost two years. I try to keep it simple. Let the doctors speak, ask questions, agree on a plan, and make adjustments as we go.

Welcome to the group! To say the least insulinomas can be challenging! Every case is a little different - it is not necessarily a lifelong condition and is actually curable if all the tumors are removed. Much like you, I had multiple insulinomas in my pancreas (11 removed or ablated). I had a modified Whipple for my first surgery which removed 2. When symptoms reappeared a month after surgery and additional tumors could not be found by my endocrinologist in NC, I was referred to an endocrinologist at Mayo Clinic. After a week of testing, 4 more were found pre-operatively, 4 were found with an intraoperative ultrasound and the 9th was found in the distal part of the pancreas that was removed. My second surgery was the same as yours - distal pancreatectomy and splenectomy.
My recovery from the distal pancreatectomy and splenectomy was complication free. I was in the hospital for 5 days. The incision was large - from sternum to belly button and the over to my left side. That was probably the most challenging part of the recovery. I have done well without a spleen. There are vaccines every 5 years post splenectomy. If you have specific procedure questions, I am happy to answer. My wish for you is this surgery removes the remainder of the tumors and it is not a lifelong condition for you 🙂
For me, there a still very small tumors in the pancreas and now in the liver so I continue to battle hypoglycemia but otherwise am doing great and receiving great ongoing care at Mayo Clinic. Please don’t hesitate to reach out with additional questions! Take care!

I had excellent glucose levels right after the enucleation procedure.

@sshindle

I hope you find the Spotlights encouraging! Did the enucleation procedure help the blood sugar to be better controlled or was there another treatment that has helped with that issue?