1. < Neuroendocrine Tumors (NETs)

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.

kwan | @kwan | Jun 3 8:42am
In reply to @klpetts "The consults and whipple procedure at Mayo Rochester were canceled because my cancer is a stage..." + (show)
@klpetts

The consults and whipple procedure at Mayo Rochester were canceled because my cancer is a stage four. When found not only did I have the pancreatic tumors but it had spread to my left hip and several lymph nodes of my abdomen. At my follow up in March my Mayo Oncologist in Eau Claire suggested the PRRT or an oral chemo. Because the cancer has now spread even more the PRRT is the best choice for me. I will be heading out early tomorrow (April 24) morning to Rochester for my first infusion. Thank you for the video, it was helpful.

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@klpetts , Hi I read your posting of April 2020 that you were heading off to have the PRRT. Wonder if you mind sharing your experience of having PRRT?
My son was diagnosed with pNET of pancreas 4 to 5 cm affecting the duodenum and tumors were also found on nearby lymph nodes. The tumor was diagnosed as Grade 1 to 2. As we were not aware of any other alternative treatments, he has signed up for PRRT. Reading the posting from this Support group, it seems like other alternative, say Lanreotide injections… Can offer shrinkage of the tumor without all the possible Radiation potential danger to the blood cells. Hope PRRT is not an overkill in my son's case.

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kwan | @kwan | Jun 8 8:30am

@klpetts. I read your other postings inr the past few days using 'search'. Sorry to know PRRT did not work for you. Hope your new chemos work for you. Good luck.

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kim1965 | @kim1965 | Aug 3 9:11pm
In reply to @klpetts "The consults and whipple procedure at Mayo Rochester were canceled because my cancer is a stage..." + (show)
@klpetts

The consults and whipple procedure at Mayo Rochester were canceled because my cancer is a stage four. When found not only did I have the pancreatic tumors but it had spread to my left hip and several lymph nodes of my abdomen. At my follow up in March my Mayo Oncologist in Eau Claire suggested the PRRT or an oral chemo. Because the cancer has now spread even more the PRRT is the best choice for me. I will be heading out early tomorrow (April 24) morning to Rochester for my first infusion. Thank you for the video, it was helpful.

Jump to this post

A quick update for my wife is doing ok, 90 day checkup after surgery showed no new growth in liver. Our team is suggesting PRRT treatment while the NET is at its lowest amount to try to knock it down even more August 30, so I’m also wondering what info anyone can share on PRRT?

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