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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.

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debbie4la | @debbie4la | Mar 22 4:10pm
In reply to @shirleyslominski "@debbie4la everyone is different you have to understand that. Fatigue nausea a deep feeling of malaise...." + (show)
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@debbie4la everyone is different you have to understand that. Fatigue nausea a deep feeling of malaise. Now the fatigue is in your bones. I live alone so getting up to make something to eat was a major feat. And the only thing that helped me were gummies. They take away the nausea and they lift your mood and give you energy. Around the 5th week I started feeling better but I had gotten a bout of very bad diarrhea that lasted a few days. By the 6th week I was feeling well enough to go out and drive and shop at a minimum. However, I had my third treatment on Tuesday and yesterday I was driving! I feel better I take a little bit of the gummies but I could probably survive without them but the nausea still there and I do get tired and I take naps a couple of times a day. Everyone's different. I hope you don't have any symptoms. Good luck I'm sure you do fine.

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@shirleyslominski Thank you so much!

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rhb18 | @rhb18 | Mar 23 6:38am

Reading about everyone’s different experiences highlights what a truly awful disease this is but also just how brave and resilient people are in fighting it ❤️‍🩹

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vinnie694 | @vinnie694 | Mar 23 8:23am
In reply to @shirleyslominski "@kreamks1 That's great to hear good luck to you. I'm hoping for good results one more..." + (show)
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@kreamks1
That's great to hear good luck to you. I'm hoping for good results one more transfusion then the pet Scan and we will see.

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@shirleyslominski Prayers for great results!, I go for my 1 year MRI (May6th) to see if the treatment is continuing to work...

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Teresa, Volunteer Mentor | @hopeful33250 | Mar 23 11:47am
In reply to @rhb18 "Reading about everyone’s different experiences highlights what a truly awful disease this is but also just..." + (show)
Profile picture for rhb18 @rhb18

Reading about everyone’s different experiences highlights what a truly awful disease this is but also just how brave and resilient people are in fighting it ❤️‍🩹

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@rhb18
You are right. This type of cancer requires patients to be brave, resilient, and educated!

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rhb18 | @rhb18 | Mar 23 5:35pm
In reply to @vinnie694 "@shirleyslominski Prayers for great results!, I go for my 1 year MRI (May6th) to see if..." + (show)
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@shirleyslominski Prayers for great results!, I go for my 1 year MRI (May6th) to see if the treatment is continuing to work...

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@vinnie694
Thank you for all your helpful comments. Sending the very best for May 6 MRI results.

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sophiarose | @sophiarose | 1 day ago

Hi
When my oncologist suggested PRRT I went to Mayo in Jacksonville for a second option
My concern was getting it gone with a heart issue I developed from taking Afinitor
Mayo agreed with my doctor so I went home and started PRRT
I had some issues but only from my already heart issues
The only issue I had with the PRRT was exhaustion
I finished my last treatment (4) November 2024 I am scheduled to get a MRI in June to make sure I am still stable
It truly wasn’t bad at all a very long day bring a good book
I wish you all the best of luck

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