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@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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Replies to "You might also want to look at the University of Iowa, Dr. Sue O'Dorisio, or her..."

@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
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.

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

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

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

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

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

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.

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?

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