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Teresa, Volunteer Mentor (@hopeful33250)

Welcome to the NETs Group! Come say hi.

Neuroendocrine Tumors (NETs) | Last Active: Sep 5 7:47am | Replies (383)

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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

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Replies to "Thank you so much!! It has been such a horrible last few years. When I started..."

I so appreciate your sharing your journey with NETs treatment. You have some great experiences! When we have new members on Mayo Connect, I plan on "tagging" you (mentioning your name in a post) so that you can offer some encouragement and support!