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amani79
@amani79

Posts: 15
Joined: Aug 10, 2017

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

Posted by @amani79, Aug 10, 2017

Hi all
I was wondering how can i get a second opinion for my 13 years old daughter that was diagnosed with neuroendocrine tumor with mets to liver
We are in Jordan,
Please help me in the procedure
I have her all CT scans PET scan liver biopsy reports

REPLY

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

@hopeful33250

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

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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

@lisalucier

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

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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

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.

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@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

@hopeful33250

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

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

@debf

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.

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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.

@hopeful33250

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

Jump to this post

@amani79
I’m glad that you checked in and updated us on your daughter. I hope that all goes well with her treatments. How frequent are her Lu-177?
Teresa

Liked by amani79

@hopeful33250

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

Jump to this post

eight to ten weeks.

@debf

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.

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I would love to hear how the Lu-177 works for your daughter. We are thinking of looking into that for our son. University of Iowa is the only place that offers it in the U.S. for people under 18 years of age. Deb Foley, Columbus, Ohio

Did he start any treatment???
How dose he feel??
My daughter got two doses of lu -177
We did a CT scan after the second dose
The disease was stable and less active.which is good since this kind of tumor is highly active.
The second CT scan will be after one month of the fourth dose hopefully we will find a shrinkage in the tumor.

Great to hear about stabilization of the disease after the second dose of Lu-177! My son is currently only on monthly Lanreotide shots, feeling great, and the last two scans showed stable disease. He is being scanned every 3 months and the next scan is in October. If he has disease progression, we will go to University of Iowa for a PRRT consult with Dr. Sue O’Dorisio. I wanted to be sure that you reached out to correct doctor at Iowa. There is a husband and wife team who both specialize in NETs ……Dr. Sue O’Dorisio and Dr. Thomas O’Dorisio. Your note said you reached out to Dr. Thomas.
On another note, I wanted to mention that we’ve done a lot of research on diet and cancer and have switched to eating as much organic, plant-based foods as possible (no meat, but occasionally sneak in a little cheese 🙂 ), along with a few vitamin supplements, and I can’t help but think that might be contributing to my son feeling so well! Just wanted to share. Take Care.

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