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

@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

Jump to this post

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?

REPLY

Hi @colleenyoung
Many thanks for the tag.
I wish they could join the chat.
I have two concerns
First the side effects
Second the benefits she will gain
I had been told that it will be only stopping the spread (if it works)
Also the Doctor believes she needs something more aggressive (treatment)
Thanks again dear

REPLY
@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

Jump to this post

@hopeful33250
Hi dear
Many thanks for the useful links.
Appreciate your reply and your caring
Actually there are new points on the liver
And there are some tiny nodules on the lung.
Although we are giving her support and positive energy to fight and survive.

REPLY

Hello @amani79

You sound like a loving, caring parent. Your daughter is fortunate to have you in her life! I am sorry to hear that there have been new nodules found. I hope that @tresjur and @major respond with some answers to their use of Everolimus (Afinitor) and share with you their experiences.

Please let us know what about this drug concerns you the most.

Teresa

REPLY
@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

Jump to this post

Hi Amani79,

My doctor prescribed Afinitor (Everolimus) and I took it for about 4-5 months a few years back after it was approved for NET patients. Unfortunately, I had to stop taking it because I developed bleeding problems which was a result of the Afinitor with other meds I was taking at the time. I cannot comment on whether Afinitor made a difference or not with the NETs since I was only on it for a short time, but while on it I did have side effects common to chemo patients: lost of appetite, weight loss, taste changes for most food and unable to eat.

Mary

REPLY
@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

Jump to this post

Many thanks appreciate your reply @tresjur
My daughter start feeling the side effects you had mentioned (loss of appetite and unable to eat)
Which kind of chemotherapy your doctor prescribes for you??

REPLY

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

REPLY
@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

Jump to this post

Hello @amani79

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

Teresa

REPLY
@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?

Jump to this post

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.

REPLY
@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?

REPLY
@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?

Jump to this post

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

REPLY
@trivia

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

Jump to this post

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?

REPLY
Please sign in or register to post a reply.
  Request Appointment