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nigelvw
@nigelvw

Posts: 2
Joined: Dec 04, 2017

Anyone treated for NETs at Mayo Clinic in Jacksonville, FL

Posted by @nigelvw, Dec 4, 2017

Is anyone here being treated at Mayo in Jacksonville FL?

REPLY

Hello @nigelvw and welcome to Mayo Connect. I don’t recall any of our Members being treated at the Florida location. The wife of @tomewilson is being treated at the Minnesota Mayo Clinic. Perhaps he can fill you in on their experiences there.

Have you or a family member recently been diagnosed with a NET or are you going for a second opinion/consultation?

Whatever your situation, we wish you well. I have had 3 surgeries for NETs since 2003. It is always difficult to wrap your head around the whole process from discovery to treatment. Please share with us, as you are comfortable doing so, something about your NET history.

We are here at Mayo Connect to support and encourage you in this process.

Teresa

As Volunteer Mentor, Teresa mentioned, my wife has been seen at Mayo, Rochester for her NETs for 2 1-2 years with surgery in 2015 and Dec 2016. She sees Dr. Halfdanarson in Rochester. She also interfaced with Dr. Halfdanarson’s Reserch Fellow Pashtoon Kasi who is now at Jacksonville – http://www.mayoclinic.org/biographies/kasi-pashtoon-m-m-d/bio-20247238. We enjoyed seeing him along with Dr. Hafldanarson. He certainly has a great deal of resources to draw on should he have questions. You’ll see he has an ‘interest’ in NETs.

@tomewilson Thanks for providing some background on Mayo Clinic in Rochester and the doctor who is now in FL who has an interest in NETs.

Teresa

@tomewilson

As Volunteer Mentor, Teresa mentioned, my wife has been seen at Mayo, Rochester for her NETs for 2 1-2 years with surgery in 2015 and Dec 2016. She sees Dr. Halfdanarson in Rochester. She also interfaced with Dr. Halfdanarson’s Reserch Fellow Pashtoon Kasi who is now at Jacksonville – http://www.mayoclinic.org/biographies/kasi-pashtoon-m-m-d/bio-20247238. We enjoyed seeing him along with Dr. Hafldanarson. He certainly has a great deal of resources to draw on should he have questions. You’ll see he has an ‘interest’ in NETs.

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I have been seeing Dr Kasi since he transferred to Jacksonville. I was diagnosed with NET’s on Dec 27th 2011. I have been going to Mayo since Jan 2013.

@tomewilson

As Volunteer Mentor, Teresa mentioned, my wife has been seen at Mayo, Rochester for her NETs for 2 1-2 years with surgery in 2015 and Dec 2016. She sees Dr. Halfdanarson in Rochester. She also interfaced with Dr. Halfdanarson’s Reserch Fellow Pashtoon Kasi who is now at Jacksonville – http://www.mayoclinic.org/biographies/kasi-pashtoon-m-m-d/bio-20247238. We enjoyed seeing him along with Dr. Hafldanarson. He certainly has a great deal of resources to draw on should he have questions. You’ll see he has an ‘interest’ in NETs.

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We really liked him. He was an enthusiastic young protege at the time.

@tomewilson

As Volunteer Mentor, Teresa mentioned, my wife has been seen at Mayo, Rochester for her NETs for 2 1-2 years with surgery in 2015 and Dec 2016. She sees Dr. Halfdanarson in Rochester. She also interfaced with Dr. Halfdanarson’s Reserch Fellow Pashtoon Kasi who is now at Jacksonville – http://www.mayoclinic.org/biographies/kasi-pashtoon-m-m-d/bio-20247238. We enjoyed seeing him along with Dr. Hafldanarson. He certainly has a great deal of resources to draw on should he have questions. You’ll see he has an ‘interest’ in NETs.

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Hello @nigelvw

Was there anything else you wanted to know about treatment for NETs at Mayo?

Teresa

Does anyone have paraganglioma tumors?

@jls77

Does anyone have paraganglioma tumors?

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Hello @jls77

I appreciate your posting about this rare type of NET, paraganglioma tumor.

I did a little research about this rare neuroendocine tumor (NET) and found this information on the Mayo Clinic website, https://www.mayoclinic.org/diseases-conditions/paraganglioma/cdc-20352970

I found one member, @jimdc, who posted in 2011, about his type of tumor.

You post that your husband’s tumor was diagnosed over 6 years ago. If you are comfortable sharing more about this, it would be helpful to know where his paraganglioma tumor was found and what type of treatment he has had. You mentioned chemotherapy, and I was wondering if he has had surgery as well? Also, is he being seen by an NET specialist or a general oncologist? Are your husband’s symptoms under control?

Another opinion from Mayo Clinic might be very helpful. There are 3 Mayo locations, Minnesota, Florida and Arizona. Here is information on appointments at one of these clinics:

Appointments by Phone
Calls may be monitored or recorded for quality purposes.

Mayo Clinic in Arizona
877-701-1691 (toll-free)
8 a.m. to 5 p.m. Mountain standard time, Monday through Friday
Mayo Clinic in Florida
904-694-2230
8 a.m. to 5 p.m. Eastern time, Monday through Friday
Mayo Clinic in Minnesota
507-722-2104
7 a.m. to 6 p.m. Central time, Monday through Friday

Tabitha, we look forward to getting to know you and supporting you and your husband at this time. Will you please post again and let us know how you and your husband are doing?

Teresa

@jls77

Does anyone have paraganglioma tumors?

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When he was diagnosed it was already metastasized throughout his whole body. That same year they did a treatment called MIBG, which is liquid radiation injected into body and it travels to attack all the tumors. He was good until Oct. of 2016 when the cancer became active again. It took a long time for them to come up with a treatment and in the mean time it landed my husband in the hospital 2 different times. The tumors in his liver are the ones that grew enough to stretch the lining of the liver to cause unbearable pain. They tried a drug called sutent for a few months, then went to chemo. He was on 3 different drugs to start. It was suppose to be 2 days together every 3 weeks. He never made it to the 2 treatment day because he was so sick, and by the second treatment they had cut it down 30% and only 2 of the drugs. It made him extremely ill, for days in bed. so he did that for 5 treatments and then said he had, had enough. He wants to know if Mayo offers treatments that are not chemo. Any Dr.’s names that deal with this disease would be appreciated.
His symptoms are kinda under control, he takes pain meds every day just to be able to function. He currently sees an oncologist at U-Penn that deals with this particular cancer.

Ive been a Pnet patient at Mayo in Jacksonville since December 2017.

Hello @titansmistress,

I see that this is your first post on Connect. I'm glad that you joined this discussion as a Pnet patient. I am Teresa, a volunteer mentor, on Connect and also a NET patient, having had three surgeries for NETs in the upper digestive tract (considered mid-gut). By the way, how did you find this discussion group?

As NETs is a rare disorder I am always glad to have someone share their experience in this group. Please feel free to share more of your story with Pnet if you are comfortable doing so. How long ago were you diagnosed? Have you had surgeries and/or other treatments?

I look forward to getting to know you better as you share in this online Community.

Teresa

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