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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 21, 2015

Hi @lucci50
Welcome to Connect. The cancer care team at the Rochester campus of the Mayo Clinic are among the county's best. But, as the Community Director of Connect, you'd expect me to say that. Would you have far to travel to Rochester?

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3 replies
lynnkay1956 | @lynnkay1956 | Nov 21, 2015

Hi! I was dx'ed with Stage 4 melanoma in 2009. I was given 6 months to live. I had a mass pressing against my superior vena cava and cutting off the blood supply to the upper half of my body.Initially they said I was inoperable...but at that point I had nothing left to lose. I had a consult with the thoracic surgeon, Dr. Robert Shen and he performed a thoracotomy and I have been cancer free ever since. I did go into a clinical trial to prevent recurrence and I did a 30 month trial in Florida. It was the first trial for my kind of cancer using an anti-pd-1 called Nivolumab, now known as Opdivo. I have been cancer free for 5 1/2 years. It is my understanding that Mayo is using Keytruda, Opdivo and other immunotherapies - all which are cutting edge treatments- I highly recommend Mayo Clinic in Rochester!! Good Luck! Lynn PS...what kind of cancer do you have??

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3 replies
lucci50 | @lucci50 | Nov 21, 2015
In reply to @lynnkay1956 "Hi! I was dx'ed with Stage 4 melanoma in 2009. I was given 6 months to..." + (show)
@lynnkay1956

Hi! I was dx'ed with Stage 4 melanoma in 2009. I was given 6 months to live. I had a mass pressing against my superior vena cava and cutting off the blood supply to the upper half of my body.Initially they said I was inoperable...but at that point I had nothing left to lose. I had a consult with the thoracic surgeon, Dr. Robert Shen and he performed a thoracotomy and I have been cancer free ever since. I did go into a clinical trial to prevent recurrence and I did a 30 month trial in Florida. It was the first trial for my kind of cancer using an anti-pd-1 called Nivolumab, now known as Opdivo. I have been cancer free for 5 1/2 years. It is my understanding that Mayo is using Keytruda, Opdivo and other immunotherapies - all which are cutting edge treatments- I highly recommend Mayo Clinic in Rochester!! Good Luck! Lynn PS...what kind of cancer do you have??

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Carcinoid tumors in the liver. Thanks for the information. It gives more confidence. <br />

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lucci50 | @lucci50 | Nov 21, 2015
In reply to @colleenyoung "Hi @lucci50 Welcome to Connect. The cancer care team at the Rochester campus of the Mayo..." + (show)
@colleenyoung

Hi @lucci50
Welcome to Connect. The cancer care team at the Rochester campus of the Mayo Clinic are among the county's best. But, as the Community Director of Connect, you'd expect me to say that. Would you have far to travel to Rochester?

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Yes i would travel dont really want to but looks like i have to. My research shows it would be the best.

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lucci50 | @lucci50 | Nov 21, 2015
In reply to @lynnkay1956 "You will be in great hands!!" + (show)
@lynnkay1956

You will be in great hands!!

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Thankyou. God bless you!!!

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lynnkay1956 | @lynnkay1956 | Nov 21, 2015

when I was dx'ed initially we were living in north central North Dakota. It was a 8 1/2 hour drive each way...and I think we drove through tornadoes and blizzards every single time 🙂 but it was well worth it! Now we live in central Wisconsin and it's only 2 1/2 hours west of us.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 23, 2015

@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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1 reply
lucci50 | @lucci50 | Nov 24, 2015
In reply to @lynnkay1956 "Hi! I was dx'ed with Stage 4 melanoma in 2009. I was given 6 months to..." + (show)
@lynnkay1956

Hi! I was dx'ed with Stage 4 melanoma in 2009. I was given 6 months to live. I had a mass pressing against my superior vena cava and cutting off the blood supply to the upper half of my body.Initially they said I was inoperable...but at that point I had nothing left to lose. I had a consult with the thoracic surgeon, Dr. Robert Shen and he performed a thoracotomy and I have been cancer free ever since. I did go into a clinical trial to prevent recurrence and I did a 30 month trial in Florida. It was the first trial for my kind of cancer using an anti-pd-1 called Nivolumab, now known as Opdivo. I have been cancer free for 5 1/2 years. It is my understanding that Mayo is using Keytruda, Opdivo and other immunotherapies - all which are cutting edge treatments- I highly recommend Mayo Clinic in Rochester!! Good Luck! Lynn PS...what kind of cancer do you have??

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Thanks carcinoid tumors/liver.<br />

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 7, 2015

Hi @lucci50 How are you doing? Have you got an appointment date?

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