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Interested in hearing people's experiences with PRRT
Neuroendocrine Tumors (NETs) | Last Active: Oct 16, 2023 | Replies (138)Comment receiving replies
Hello @sherryboynton
First of all, welcome to Mayo Connect. I see that you just began posting today and I'm glad that you are reaching out on this discussion group. On Mayo Connect, we have only had one Member who has mentioned PRRT treatment. She is this process now and I will invite her to discuss it if she would like to. Her name is @tresjur.
Regarding your appointment at Mayo in Jacksonville next month, you should definitely discuss this with them. I have not been treated at Mayo. While I've had three surgeries for NETs at this time there is no evidence of metastasis, so I have not looked into this type of chemotherapy. I'm sure that they will do their best to answer your questions. As I was reading some of your other posts it seems like you have met with a lot of doctors who have indicated that your type of tumor is not a candidate for this type of treatment. Is that correct?
How are you feeling now? Do you have symptoms of carcinoid syndrome? What is your greatest concern right now?
Here is a video about PRRT treatment from the Carcinoid Foundation, https://www.youtube.com/watch?time_continue=3&v=AqAyEGECDkQ
Replies to "Hello @sherryboynton First of all, welcome to Mayo Connect. I see that you just began posting..."
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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Hey Teresa, Thank you for the response. I am not sure yet if I am an eligible candidate for PRRT but according to the tests of the tumor tissue I am NOT a candidate for immunotherapy. My main concern at this moment is when to know when to stop seeing various doctors. I've been told there is no more benefit of surgery for me and chemo and immunotherapy would not be viable either. PRRT was kind of a last ditch effort but I'm not sure if even that will be for me. Lately I have been quite down, nausea and some vomiting, fatigue, and bad stinging around the Gtube site. I have been to palliative care and they have given me some meds for nausea which have helped some but trying to wrap my head around it all.