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

@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

eight to ten weeks.

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.

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

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