How to get a second opinion for an international patient??

Hello @amani79

I am sorry to hear of your daughter's diagnosis with NETs and mets to the liver. I appreciate your contacting Mayo Connect regarding having someone at Mayo Clinic help you with your daughter's NET diagnosis. Here is some information for International Patients who are going to the Minnesota location. Mayo Clinic in Minnesota; 507-284-8884; 507-538-7802 (Fax); Intl.mcr@mayo.edu
Office hours: 7 a.m. to 5 p.m. (Central time) Monday through Friday.
Please let us know if we can assist you in any other way.

How is your daughter doing? Has she started any treatments yet?

Teresa

Thank you so much.
She was admitted to the hospital
Severe abdominal pain and vomiting
Now she is at home
Nauseated all the time with some severe pain attack.
She got two doses of lu-177
There are two more doses of lu-177 in September and November.
Thanks again appreciate your reply.

Welcome, @amani79. Glad you joined us here. I am a moderator on this site, but on a more personal note, I wanted to let you know my father-in-law has a similar situation with neuroendocrine tumor with mets to the liver, and he's gotten excellent care here at Mayo Clinic.

If you are interested in getting a second opinion at Mayo Clinic, you can request one at this link: http://mayocl.in/1mtmR63

Thank you so much
Can you tell me please what kind of medicine did he get??
When did he was diagnose???

Hi, @amani79--My father-in-law was diagnosed last spring, after having a suspicious spot on his liver for some years that his doctors at another medical center 5 hours from here in his hometown had considered benign. It later grew and they did a biopsy, then diagnosed him with neuroendocrine cancer and sent him to Mayo Clinic. He has been on 4 chemotherapy regimens now--the first he could not tolerate, as it gave him such terrible mouth sores he could not longer stand it. The next two just didn't work on his particular tumors (the tumor mets grew), unfortunately, though they work on a significant percentage of neuroendocrine tumor mets in other patients. This spring they put him on folfox, which is evidently most commonly used for colon cancer, but the doctors had seen it work before on other neuroendocrine tumor patients for whom his previous chemotherapy regimen had not worked. We learned in June that his largest tumor met in his liver had stopped growing since taking the folfox, and all of his smaller mets shrunk in half. This made him a potential surgical candidate again (to remove the cancerous half of his tumor and let the other side regenerate), if he meets a number of requirements (e.g., lose 15 pounds, not have any further heart attacks) by September.

Hope this is of some help.

Hello @amani79

I've been thinking about you and your daughter. How is she feeling? Are you still planning a trip to Mayo Clinic for a second opinion?

Teresa

You might also want to look at the University of Iowa, Dr. Sue O'Dorisio, or her husband Thomas O'Dorisio, because I believe they are the only NET specialists who specialize in pediatric NETs. We are taking our 16 year old son there in near future. Best wishes to you.

@debf

We appreciate your sharing information, I wasn't aware that there were pediatric NET specialists.

I hope that all goes well with your son's appointment. When will your son be seen?

Teresa

Hi
We are fine, waiting for the third
Lu-177 dose for my daughter,
Appreciate your caring

Hi
I really appreciate your helpful information ,
I was looking for a pediatric NETs,
I sent an inquiry to Dr.Thomas
Thanks again and best wishes to you and to your son.