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Welcome to the NETs Group! Come say hi.

Neuroendocrine Tumors (NETs) | Last Active: Nov 29 1:22pm | Replies (429)

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@andre1221

My name is André. My caretaker and best friend, Stephanie (wifey) live near the Sanford/Orlando Airport.

I started getting sick approximately fourteen years ago. Roughly seven years ago, my illness went into overdrive. I have countless ambulance trips with hospital stays. My attacks began by presenting as anaphylactic shock. A local allergist treated me for two years and ultimately sent me to Mayo Clinic. My first appointment was October 16, 2017. It was the best thing that ever happened to me with this journey. On December 21, 2017, I was officially diagnosed with NETs and Carcinoid Syndrome.

The biggest battle that I have is there are no physical indications of tumors. My diagnosis came from signs and symptoms, positive bio-markers and positive response to SSA’s.

On August 01, 2018, my second opinion with another Florida NET Specialist theorized when my appendix ruptured in the 1990’s, it scattered cells throughout my system.

I am so blessed and beyond thankful for the Mayo Staff and fellow patients, who continue to support me throughout this battle.

I am currently on Lanreotide, Creon, Xermelo, Enterade and several other medications to give me some quality of life.

One day, Steph and I want to work for Mayo Clinic so we can help other patients feel the same warmth and love that was given to us.

Always glad to help. Please feel free to reach out.

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Replies to "My name is André. My caretaker and best friend, Stephanie (wifey) live near the Sanford/Orlando Airport...."

Hello Andre! Andre and his wife Stephanie have been founding members of the group and it couldn’t have happened without them!) I want to say thank you to both of you for everything you do! You both are amazing people and we all appreciate you!

Hello, @andre1221 and @amandafl, I am pleased to join Colleen, @colleenyoung, in welcoming you to Mayo Connect. It is good to have more Floridians in our discussion group!

It sounds as if you have both went full-circle with this carcinoid disorder. I'm especially intrigued by @andre1221's story of no visible tumors. I can't imagine how difficult it was to find the correct diagnosis. It sounds as if Mayo in Florida was really amazing to help you figure out this mysterious situation. I can tell you are grateful.

Andre, you say, "I am currently on Lanreotide, Creon, Xermelo, Eneterade, and several other medications to give me some quality of life." Which of your symptoms have been helped the most by these treatments"? Also, I have heard of the benefits of Eneterade before. How much do you use each day, or do you only use it when you are having symptoms?

Hey Andre'! Have you heard anything more about Mayo Group developing a Carcinoid Crisis ID card or where I can get one? Thanks❣🦓