1. < Neuroendocrine Tumors (NETs)

Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Posted by lucci50 @lucci50, Nov 21, 2015

has anyone used mayo clinic in Rochester Minnesota for carcinoid tumors. the diagnosis was carcinoid tumors in the liver. I am looking for the best place to go to treat/and or remove the disease. appreciate any advise.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

jstubbs0218 | @jstubbs0218 | Nov 9, 2022

I do. I had a lung net removed
In April. Best guy at Mayo is dr thor halfdanerson.

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firepowr | @firepowr | Nov 10, 2022
In reply to @firepowr "I started with two rounds of capecitabine/temozolamide, which did not work at all. I switched to..." + (show)
@firepowr

I started with two rounds of capecitabine/temozolamide, which did not work at all. I switched to FOLFIRINOX in May 2020, and completed 10 cycles. I had tumor shrinkage but it was a rough treatment. Oxaliplatin was removed due to neuropathy in October 2020, and I have since had 50 rounds of FOLFIRI, generally every two weeks over the last two years. Scans have been stable, so we just keep doing it. My most recent CT scan showed possible growth in a tumor in my liver, so I’ll know more in about two weeks whether we might have to switch to a new treatment in the near future.

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Had appts at Mayo this week and CT scan shows growth in multiple liver tumors. Switching to PRRT as soon as it’s approved by insurance. Hope it works.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 20, 2022
In reply to @firepowr "Had appts at Mayo this week and CT scan shows growth in multiple liver tumors. Switching..." + (show)
@firepowr

Had appts at Mayo this week and CT scan shows growth in multiple liver tumors. Switching to PRRT as soon as it’s approved by insurance. Hope it works.

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@firepowr, sorry to hear that the CT scan revealing more growth in the liver. Glad that it was caught however and that PRRT is an option. You may be interested in taking part in these related discussions as suitable for you:
- PRRT for NETs: Questioning whether I should continue or not https://connect.mayoclinic.org/discussion/prrt-for-nets/
- Interested in hearing people's experiences with PRRT https://connect.mayoclinic.org/discussion/prrt-treatment/
- Treatments for Carcinoids https://connect.mayoclinic.org/discussion/treatments-for-carcinoids/

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 21, 2022
In reply to @melmangen "I am so thankful for the opportunity to have a virtual appointment with the Mayo Clinic..." + (show)
@melmangen

I am so thankful for the opportunity to have a virtual appointment with the Mayo Clinic in two weeks!

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Hello @melmangen,

I see that you were going to have a virtual appointment with Mayo Clinic. Have you had that appointment? I hope that you were able to get some information and direction.

Will you provide an update when it's convenient?

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wyowest | @wyowest | Nov 27, 2022

My husband was diagnosed in March with NET. We have been going to Rochester for primary care and then our local oncologist does his monthly injections. Diagnostic imaging picked up more at Mayo than what was done at our home hospital. Have been really happy so far with the team they have in place for treatment so far. Halfway through his first PRRT treatments.

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sstorlie | @sstorlie | Apr 4, 2023

Just going to say that I just finished my first week at Mayo and was SO impressed. I’m from Minnesota originally, but live in DC. They’re evaluative to see if a NET might be to blame for my ongoing symptoms (gastronoma ruled out-ish by my local GI, but maybe a carcinoid). I mean, you know you get the best of the best doctors, but I’m here to give a plug to the nurses, lab techs and support staff. Literally the best. No answers for me yet, but feeling hopeful for the first time in a while.

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davisnrn | @davisnrn | Apr 5, 2023

Whatever the findings are, I had the same feeling when I went to Mayo in Rochester in 2018, with a collection of strange symptoms and in declining health. Thanks to Mayo expertise and excellent care I recovered and continue follow up now under their treatment plans, and i am alive and in amazing shape for the shape I am in. I have liver mets from primary NET surgically removed in 2015, having developed non-Hodgkins lymphoma in 2021. Life is still pretty good for me. Stay hopeful.

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davisnrn | @davisnrn | Apr 5, 2023
In reply to @colleenyoung "@lynnkay1956 that's a lot of driving. What advice would you give to people who drive so..." + (show)
@colleenyoung

@lynnkay1956 that's a lot of driving. What advice would you give to people who drive so far for treatment? How to prepare for the trip and especially dealing with the fatigue and side effects after get treatment. Did you often stay overnight in Rochester?

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the town of Rochester is all about services to Mayo patients-hotel shuttles, meal delivery—all very supportive. Mayo also has some reasonable housing options for folks doing treatment. Do what makes you feel best. I stay at a nearby hotel as my follow up visits usually take 3-4 days and I have to fly there and back home. Initially I was living in Alaska, now 5 years later I am in South Carolina. Just take care of yourself to feel your best.

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terlato | @terlato | Apr 5, 2023

I tried but they would not take my insurance or just Medicare or even self pay! But they keep saying make an appointment with them?????

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