Mayo Clinic Connect
Is anyone here being treated at Mayo in Jacksonville FL?
Liked by titansmistress
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.
Liked by John, Volunteer Mentor
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.
Liked by Colleen Young, Connect Director, John, Volunteer Mentor, Teresa, Volunteer Mentor
@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.
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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.
Liked by Teresa, Volunteer Mentor, amandafl
We really liked him. He was an enthusiastic young protege at the time.
Liked by Teresa, Volunteer Mentor
Was there anything else you wanted to know about treatment for NETs at Mayo?
Does anyone have paraganglioma tumors?
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
8 a.m. to 5 p.m. Mountain standard time, Monday through Friday
Mayo Clinic in Florida
8 a.m. to 5 p.m. Eastern time, Monday through Friday
Mayo Clinic in Minnesota
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?
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.
Liked by amandafl
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.
After many years of being misdiagnosed I became a patient at Mayo in Dec. 2017. I was diagnosed w/a pancreatic net @ Shands UF in Oct. 2016 via EUS and biopsy. Shocked when UF said not to worry, it's a slow growing tumor. I had soo many symptoms and years of painful bouts of pancreatitis. Myself not knowing it was pancreatitis and that it was not all in my head. I spent 2016-2017 researching my symptoms and w/multiple GI dr.s finally got answers and demanding a referral to Mayo. I found Connect when I became a patient but due to surgery Jan. 2018 then a post op fluid collection July 2018 I've been to ill with recovery and symptoms to Connect. I apologize for the long delay in my reply.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor, amandafl
I'm so glad that you posted again, @titansmistress. It sounds like you have had quite an experience of surgery and post-op problems. I'm glad that you are well enough to Connect with us again. Please feel free to share some of your experiences as you are comfortable doing so. I'm looking forward to getting to know you better.
How are you feeling now? What type of surgery did you have? Has there been any monthly injection treatments since your surgery?
I hope you are doing well. You last posted awhile back and I was thinking about you. I would enjoy hearing how you are doing now. Any new treatments?
How is your husband doing with his paraganglioma tumor diagnosis? When you last posted he was managing his pain and you were looking for some other treatment options, perhaps at Mayo. Has he been considered for PRRT treatment?
What is NETS
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