Interested in hearing people's experiences with PRRT

Posted by SMB @sherryboynton, Mar 29, 2019

Sorry if this has been discussed before, but I was interested in hearing peoples experience with PRRT (Peptide Receptor Radionuclide Therapy)? I live in Georgia and have an appointment at Mayo in Jacksonville next month and I was wondering if this was something they would discuss...

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

kellysg | @kellysg | Feb 18, 2023

In reply to @hopeful33250 "@kellysg You have provided a lot of information for @markmark007. NETs can be confusing, and it..." + (show)

@hopeful33250 Mayo finished their review of my case and accepted me. I have an appointment in early March!

Teresa, Volunteer Mentor | @hopeful33250 | Feb 18, 2023

In reply to @kellysg "@hopeful33250 Mayo finished their review of my case and accepted me. I have an appointment in..." + (show)

I'm so glad to hear that, @kellysg! I appreciate the update. I'm looking forward to your comments and update after the appointment at Mayo.

Do you have a list of questions prepared for your upcoming appointment?

kellysg | @kellysg | Feb 18, 2023

In reply to @hopeful33250 "I'm so glad to hear that, @kellysg! I appreciate the update. I'm looking forward to your..." + (show)

I keep a notebook, basically my Health Journey, of appts, questions and answers, lab results, etc. I'll be ready!

Teresa, Volunteer Mentor | @hopeful33250 | Feb 18, 2023

In reply to @kellysg "I keep a notebook, basically my Health Journey, of appts, questions and answers, lab results, etc...." + (show)

It sounds as if you are well-prepared, @kellysg. Wishing you the best!

sueannsellers | @sueannsellers | Feb 19, 2023

In reply to @kellysg "@hopeful33250 Mayo finished their review of my case and accepted me. I have an appointment in..." + (show)

Congratulations!

kwan | @kwan | May 16, 2023

My son who is in his early forties was diagnosed with NET in his pancreas. Surgery was scheduled to remove his whole pancreas gall bladder, spleen and part duodenum. It did not work out as tumor has engulfed his blood vessels and has spread to his nymph node. Only gall bladder was removed and bypass done.
One oncologist said it is stage three but tumor is of grade one from the sample taken. He would follow NCCN guideline to treat him with Everolimus in 6-8months. But success rate to shrink the tumor is only 10%. We were discouraged.
We heard of PRRT and wonder if this is a proper way to go. The doctor said his pNET is non functioning type according to his urine test result. The treatment will start around end of next month.
Any comment is greatly appreciated

kellysg | @kellysg | May 17, 2023

In reply to @kwan "My son who is in his early forties was diagnosed with NET in his pancreas. Surgery..." + (show)

@kwan Here is a link I found under the PRRT discussion group. It's very informative! If you search PRRT on Mayo Connect, there's lots of boards, and I've contributed several posts there.
Best wishes on your cancer journey!

http://prrtinfo.org/prrt Peptide Receptor Radionuclide Therapy (PRRT) about PRRT one of the best known treatment for neuroendocrine...

kwan | @kwan | May 17, 2023

In reply to @kellysg "@kwan Here is a link I found under the PRRT discussion group. It's very informative! If..." + (show)

@kellysg thank you very much for your prompt reply. The web site you gave is very informative. I will also search for your other posts on MayoConnect.
Your help is very much appreciated in this difficult time.

Colleen Young, Connect Director | @colleenyoung | May 27, 2023

In reply to @kwan "@kellysg thank you very much for your prompt reply. The web site you gave is very..." + (show)

@kwan, I moved your question about PRRT to this existing discussion:
- Interested in hearing people's experiences with PRRT https://connect.mayoclinic.org/discussion/prrt-treatment/

As @kellysg suggested, you'll find many other PRRT -related discussions using the Search function.

Has your son's oncologist talked to him about PRRT? Is a treatment that would help in his case? How is he doing?

kwan | @kwan | May 27, 2023

In reply to @colleenyoung "@kwan, I moved your question about PRRT to this existing discussion: - Interested in hearing people's..." + (show)

@colleenyoung Thanks very much. My son's PRRT treatment will start late next month, meanwhile they put him on Everolimus while they prepare for the medicine.
We were not aware of any other treatments alternative at the time and only heard of PRRT thru YouTube and asked our surgeon to introduce us to the specialist .