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

Many thanks for sharing such helpful informations.
Yes we contacted the two doctors you have mentioned
Appreciate your reply
Hope your son and my daughter will be get well very soon
Take care

@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 would like to know the grade of the tumor in your son’s case?
Is it poorly deferentiated or well??
Did you get any new opinion??
Hope your son is feeling better now

@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. My son has well differentiated, grade 2 NETs. He is currently only receiving monthly Lanreotide shots and feeling pretty well. He is going to have another MRI and possibly a gallium scan in the near future, so that will determine if he needs to progress to another treatment.

You mentioned that your daughter has already received Lu-177 which I believe is PRRT – correct? If so, you are lucky that you have access to that where you live, because it is not yet approved in the U.S. We are waiting, and hopeful, that it will be approved soon.

Take care!
Deb

@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
How are you? Hope the CT showed shrinkage in the tumor.
My daughter was diagnosed grade 3 poorly differentiated NET
We got a second opinion showed that she has well differentiated grade 2 NET
Did your son take any medications?
Or only the monthly injection??
Did he has a mets??
Sorry for keep asking but I’m looking to a similar case to my daughter case
Appreciate your reply
Take care

@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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Hello @amani79

I am so glad for the update on your daughter. Was her second opinion obtained in the U.S. or in your country? Was the treatment changed from her previous LU-177?

As I’m thinking that your post was meant for @deb, I’ll mention her in this post so that she gets notification of your message.

I hope your daughter does well in her treatment.

Teresa

@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@hopeful33250
Thanks dear thats right!!
I got it from Royal hospital In London
Prof Caplin
No the treatment won’t change
She will get her fourth dose of lu-177 by the end of November
But her doctor here in Jordan was planning to change the plan and give her Cisplatin since it’s poorly differentiated but now it won’t be suitable for her case.
And we may shift to monthly dose of octeriotide instead of daily.
She is much better now.
I will keep you updated.
Thanks for your kind reply.

@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. Sorry it took me so long to reply. I traveled on Saturday to a NET conference at the University of Iowa.
My son also has grade 2 well-differentiated PNETs with Mets to liver, and I just met another family with an 8 year old boy with the same diagnosis (stage 4, grade 2 PNETs). My son has only received monthly Lanreotide shots so far, but we are looking into the possibility of PRRT. The 8 year old boy has tried CapTem with no response, so now they just started PRRT. The 8 year old has a lot of stomach pain, so they are looking to shrink his tumors quickly. Did the PRRT help your daughter?

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

@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

I am so sorry to hear of your daughter’s progression of cancer. I can’t imagine how difficult this must be for you!

Until someone posts about their experience with Everolimus, I thought it might be helpful to read about this drug from the Mayo Clinic website, https://www.mayoclinic.org/drugs-supplements/everolimus-oral-route/description/DRG-20072842

I also found some references to this drug on the following websites, cancer.gov website., https://www.cancer.gov/about-cancer/treatment/drugs/everolimus and https://www.fda.gov/Drugs/InformationOnDrugs/ApprovedDrugs/ucm488028.htm.

As you can see this drug was recently approved for use in the United States.

If you are comfortable sharing more information about your daughter’s condition, has your daughter’s progression included different areas of her body (different organs) or are the tumors in the same areas but just larger?

Teresa

@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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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?

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

@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.

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

@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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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

@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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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??

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