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Oct 28, 2019 · Possible NET with No Evidence of Tumor: Mediastinal Mass in Neuroendocrine Tumors (NETs)

Good morning. I see Dr. Jason Starr at Mayo Jacksonville, Fl. In the last two years, they have done extensive work ups to include exploratory laparotomy. I’m currently on Lanreotide 180mg X 21 days. Double butt darts suck but they are working lol. Also on 300 mcg of Octreotide as needed. I’m happy to help you or any others on this path. So sorry for what you and the others are dealing with. ~ André

Oct 27, 2019 · Neuroendocrine Cancer Support Group Meeting FL in Neuroendocrine Tumors (NETs)

Thank you very much for putting this out. Hope all is well 😀. ~ André

Sep 24, 2019 · I am not ok with this at all in Neuroendocrine Tumors (NETs)

I’m sorry if there was a misunderstanding. Moffitt and MD Anderson in Houston refused to see me initially because I had “no evidence of disease”. It was Mayo who picked up the ball and ran. Moffitt agreed to see me, only after Mayo’s diagnosis. I can’t even begin to praise Mayo enough for all that they have done. The rumors are true, they are the Disney World of the medical industry. I’m so, so thankful and proud to call myself a Mayo Clinic patient. Please consider them for any of your medical needs, especially to manage NETs.

Sep 24, 2019 · I am not ok with this at all in Neuroendocrine Tumors (NETs)

Good afternoon. This whole ordeal started with me fourteen years ago and gradually worsened. My first indicator was chronic headaches that would last 30 seconds to 3 days. My local pcp referred me to Shands at UF. After 3 years of misdiagnosis, the Chief of their Neurology Department told me that they couldn’t fix me. He cited that I didn’t fit in any headache family, that I was somewhere between cluster and migraine. He was polite and professional but…..

When Mayo Jax started treating me, their NET Specialist said the reason for the obscure headaches is the Serotonin being dumped during carcinoid attacks and/or crisis. Obviously, a lot can change from fourteen years ago. Unfortunately, I went to them thinking as reputable that they are, I would have a good chance. Sadly, they just focused on my headache and never considered anything else (yes, looking back there were several signs and symptoms pointing to this illness).

I am also a patient at Moffitt. They did my second opinion in August 2018. I was happy with them but comparing them to Mayo Clinic isn’t even close for me. No disrespect to anyone currently there or considering them, just my experience and opinion.

Hope you get some relief and results. If I can help, please reach out.

Take care, André

Sep 24, 2019 · Welcome to the NETs Group! Come say hi. in Neuroendocrine Tumors (NETs)

Thank you. Absolutely, glad to help any way that I can. Enjoy your week.

Sep 24, 2019 · Welcome to the NETs Group! Come say hi. in Neuroendocrine Tumors (NETs)

Thank you so much!! It has been such a horrible last few years. When I started at Mayo on Oct. 16, 2017, they had just lost Dr. Elizabeth. They sent me to a NET Friendly hem/onc in her place. He started me on Sandostatin 30mg and 100mcg of Octreotide. I kept getting more sick, so the dosing of Sandostatin increased and maxed out at 90mg.

I was so fortunate when I met my battle buddy, Nigel Vaughn-Williams. He was being treated by Dr. Pashtoon Kasi. I immediately switched to Dr. Kasi and started on Lanreotide 120×28 days, plus increased the Octreotide to 300mcg. I got instant relief but the diarrhea and occasional carcinoid attacks and crisis continued.

Once Dr. Starr took over, he increased my Lanreotide 120mg to 21 days. On that routine, I was still requiring “rescue shots” but had huge improvement comparatively. He increased me to my current, 180mg x 21 days. It has been amazing!!! In the last 11-12 weeks, I have needed only one rescue shot.

When Dr. Kasi took over, he put me on 24,000 units of Creon but quickly increased it to my current 36,000 units. I do 3 at each meal, 9 per day. Just adding Creon brought my diarrhea from 20-21 x a day down to 13-15. He also started me onto Xermelo. That did the best for me, putting me down to 3-5 x a day.

Roughly two months ago, Dr. Starr’s Physician Assistant, Ashton Ritter told me about Enterade. She gave me a one month sample. I took it as instructed, 2 bottles a day for 5-7 days, then transition to 1 a day or every other. Once you get the initial 5-7 days under you, most can take it as needed. If you go too long without use, you need to restart the cycle. Our local, Enterade Rep, Cynthia has been amazing. She was a guest speaker at one of our support group meetings as well. The best news about Enterade is I’m now down to 0-1 or 2 times of diarrhea per day.

Hopefully this information will help somebody along this journey. I’m so thankful everyday for being a part of Mayo Clinic and this group.

Take care ~ André

Sep 19, 2019 · Welcome to the NETs Group! Come say hi. in Neuroendocrine Tumors (NETs)

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.

Sep 8, 2019 · Neuroendocrine Cancer Support Group in Neuroendocrine Tumors (NETs)

We missed you Shannon. Hope all is well from the storm. Hope to talk to you at the next meeting on October 03.