lucci50
@lucci50
@lucci50
Posts: 22
Joined: Nov 21, 2015
Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?
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.
lynnkay1956
@lynnkay1956
@lynnkay1956
Posts: 47
Joined: Oct 26, 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??
Liked by Colleen Young, Connect Director
lucci50
@lucci50
@lucci50
Posts: 22
Joined: Nov 21, 2015
@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??
Carcinoid tumors in the liver. Thanks for the information. It gives more confidence.
Liked by Colleen Young, Connect Director
lynnkay1956
@lynnkay1956
@lynnkay1956
Posts: 47
Joined: Oct 26, 2015
lucci50
@lucci50
@lucci50
Posts: 22
Joined: Nov 21, 2015
@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?
Yes i would travel dont really want to but looks like i have to. My research shows it would be the best.
Liked by Colleen Young, Connect Director
lucci50
@lucci50
@lucci50
Posts: 22
Joined: Nov 21, 2015
lynnkay1956
@lynnkay1956
@lynnkay1956
Posts: 47
Joined: Oct 26, 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.
Liked by Colleen Young, Connect Director
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 6779
Joined: Jul 23, 2014
@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?
lucci50
@lucci50
@lucci50
Posts: 22
Joined: Nov 21, 2015
@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??
Thanks carcinoid tumors/liver.
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 6779
Joined: Jul 23, 2014
lucci50
@lucci50
@lucci50
Posts: 22
Joined: Nov 21, 2015
@colleenyoung Hi @lucci50 How are you doing? Have you got an appointment date?
Yes thanks my appt is Dec 28th
Liked by Colleen Young, Connect Director
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 6779
Joined: Jul 23, 2014
Good for you. I’m sure you have plenty of thoughts running through your head as you prepare for your appointment. I hope you’ll feel welcome to check in here on Connect if you just need someone to talk to, someone who has been there. We’re here even through the holidays.
I’d also like to introduce you to Sheryl M. Ness @smness. Sheryl is a patient educator at the Mayo Clinic in Rochester. She and her team in the Cancer Education Center help inform and educate patients, families and caregivers about services and resources to help them through the cancer journey. The Center is also a beautiful, calming place to relax between appointments. http://www.mayoclinic.org/patient-visitor-guide/education-centers/cancer-education/minnesota
Stay in touch.
Sheryl M Ness, MA, RN
@smness
@smness
Posts: 71
Joined: Sep 25, 2012
@lucci50 I am so glad that you have your appointment scheduled. Mayo has much expertise in diagnosing and treating carcinoid. We can also help you in understanding your treatment plan once you have it outlined. Stop into the Cancer Education Center on the main (street) level of the Gonda building and our educators will assist with your needs. I hope to meet you while you are here!
Liked by Colleen Young, Connect Director
lucci50
@lucci50
@lucci50
Posts: 22
Joined: Nov 21, 2015
@smness @lucci50 I am so glad that you have your appointment scheduled. Mayo has much expertise in diagnosing and treating carcinoid. We can also help you in understanding your treatment plan once you have it outlined. Stop into the Cancer Education Center on the main (street) level of the Gonda building and our educators will assist with your needs. I hope to meet you while you are here!
Thankyou I will
Liked by Colleen Young, Connect Director
lucci50
@lucci50
@lucci50
Posts: 22
Joined: Nov 21, 2015
@smness @lucci50 I am so glad that you have your appointment scheduled. Mayo has much expertise in diagnosing and treating carcinoid. We can also help you in understanding your treatment plan once you have it outlined. Stop into the Cancer Education Center on the main (street) level of the Gonda building and our educators will assist with your needs. I hope to meet you while you are here!
Hope 2 meet I too
@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?