1. < Neuroendocrine Tumors (NETs)

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

Posted by amani79 @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

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 19, 2018

Hello @amani79 and @debf

It has been a while since either of you posted about your children's treatment for NETs. I hope that their current treatment is proving helpful.

I would enjoy hearing from you when you have an opportunity to post.

Teresa

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 31, 2018
In reply to @amani79 "Hi all My daughter had a CT scan last week It showed that there is a..." + (show)
@amani79

Hi all
My daughter had a CT scan last week
It showed that there is a progression unfortunately
Her doctor wants to give her Everolimus
Anyone have an experience with Everolimus
Please share your story with us
Many thanks

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Hello @amani79

It has been a while since I have heard from you. How is your daughter doing?

Teresa

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trivia | @trivia | May 7, 2021
In reply to @colleenyoung "Hi @amani79 I'm tagging @tresjur and @major on this message. They both have had experiences with..." + (show)
@colleenyoung

Hi @amani79
I'm tagging @tresjur and @major on this message. They both have had experiences with everolimus (Afinitor) and will hopefully join this discussion to share their experiences with you.

Amani, do you have a particular concern about this drug?

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Hello, I also have a question about Afinitor. Apparently, its better at treating the PIK3 CA mutation if its domain is in H1047R than Piqray. I am curious if anyone has taken Afinitor instead of the Piqray with Fulvestrant and what their experience has been? I've been on Fulvestrant and its only worked now for about 8 months to stop the progressions. Recent scans showed more liver lesions from breast cancer spread recently.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 8, 2021
In reply to @trivia "Hello, I also have a question about Afinitor. Apparently, its better at treating the PIK3 CA..." + (show)
@trivia

Hello, I also have a question about Afinitor. Apparently, its better at treating the PIK3 CA mutation if its domain is in H1047R than Piqray. I am curious if anyone has taken Afinitor instead of the Piqray with Fulvestrant and what their experience has been? I've been on Fulvestrant and its only worked now for about 8 months to stop the progressions. Recent scans showed more liver lesions from breast cancer spread recently.

Jump to this post

Hello @trivia and welcome to Mayo Clinic Connect. I see that you have posted this question in the NETs discussion group. Have you been diagnosed with a neuroendocrine tumor? It appears from your post that your primary cancer is breast cancer. Is this correct?

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1 reply
trivia | @trivia | May 9, 2021
In reply to @hopeful33250 "Hello @trivia and welcome to Mayo Clinic Connect. I see that you have posted this question..." + (show)
@hopeful33250

Hello @trivia and welcome to Mayo Clinic Connect. I see that you have posted this question in the NETs discussion group. Have you been diagnosed with a neuroendocrine tumor? It appears from your post that your primary cancer is breast cancer. Is this correct?

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Yes, breast cancer that has metastasized to the liver. But has those mutations.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 10, 2021
In reply to @trivia "Yes, breast cancer that has metastasized to the liver. But has those mutations." + (show)
@trivia

Yes, breast cancer that has metastasized to the liver. But has those mutations.

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Thanks for the added information, @trivia. As NETs in the breast is rather unusual, I would like to invite @trixie1313, to this conversation. She also has had breast cancer with NETs. If you would like to read more about her experience, here is a link to a discussion she started on this topic,
https://connect.mayoclinic.org/discussion/ned-of-breast/
What type of treatment is being suggested for you @trivia? Are you seeing a NETs specialist?

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1 reply
trivia | @trivia | May 10, 2021
In reply to @hopeful33250 "Thanks for the added information, @trivia. As NETs in the breast is rather unusual, I would..." + (show)
@hopeful33250

Thanks for the added information, @trivia. As NETs in the breast is rather unusual, I would like to invite @trixie1313, to this conversation. She also has had breast cancer with NETs. If you would like to read more about her experience, here is a link to a discussion she started on this topic,
https://connect.mayoclinic.org/discussion/ned-of-breast/
What type of treatment is being suggested for you @trivia? Are you seeing a NETs specialist?

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I don't have Neuroendocrine tumors. Mine are HR + HER2-. Sorry for the confusion. My Oncologist would like to start me on Piqray because of the mutations. But there's also another drug called Afinitory for PIK3 mutation that has a domain of H1047R, which seems more successful but with more side effects. The studies have paired Piqray with Fulvestrant to cover the HR+ mutation.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 10, 2021
In reply to @trivia "I don't have Neuroendocrine tumors. Mine are HR + HER2-. Sorry for the confusion. My Oncologist..." + (show)
@trivia

I don't have Neuroendocrine tumors. Mine are HR + HER2-. Sorry for the confusion. My Oncologist would like to start me on Piqray because of the mutations. But there's also another drug called Afinitory for PIK3 mutation that has a domain of H1047R, which seems more successful but with more side effects. The studies have paired Piqray with Fulvestrant to cover the HR+ mutation.

Jump to this post

Hi @trivia,

We do have a discussion in the Breast Cancer group where others have discussed HR + HER2-. Here is the link https://connect.mayoclinic.org/discussion/her2-positive-her2-negative/
Perhaps you can find some support and additional information there.

I would like to invite @elizm @cindylb and @michmom to post with you as well.

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