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Interested in hearing people's experiences with PRRT

Neuroendocrine Tumors (NETs) | Last Active: Oct 16, 2023 | Replies (138)
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@markmark007

Teresa:
My wife Sharon has recently had a C/T which showed additional lesions in the liver which were "stable" 6-8" months ago. Additionally, there appears to be a lesion on her spleen. Her recent blood work (Chromogranin & serotonin) showed troubling increases. She does not present with typical NET symptoms. She has been on lanreotide injections since 2017.
She is scheduled for a Ga 68 scan on 02/02/2023.
Questions:
1. If PRRT therapy is recommended for her case, is this the "last resort"?
2. If not, what other therapies have been used - we do understand that this is patient specific - just want to know what others have done post - PRRT.
3. Any other input will be sincerely appreciated.
Many thanks and God bless,
Mark

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Replies to "Teresa: My wife Sharon has recently had a C/T which showed additional lesions in the liver..."
markmark007 | @markmark007 | Jan 25, 2023

Comments - please!!
Thanks ,
Mark

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Teresa, Volunteer Mentor | @hopeful33250 | Jan 25, 2023

Hello @markmark007,

When you say that you do understand that these questions are "patient specific" you are correct. I have heard of NETs patients who have had more than one round of PRRT and most likely there are other treatment modalities that I am not aware of. It is important to communicate some of these concerns with your oncologists.

I might also recommend that you connect with Mayo's virtual support group if you have not done so already. This group meets on the first Thursday of every month from 5:30 to 7 p.m. EST, via Zoom. The meeting originates from the Mayo Jacksonville campus and the facilitator of the meeting is a Mayo social worker. There are approximately 25 NETs patients who attend each meeting. While there is often a speaker from Mayo's staff there is usually a minimum of a half hour when the members have an opportunity to share with each other and ask questions.

I realize that I have not answered many of your questions, however, NETs treatment is quite an individual process.

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