← Return to Interested in hearing people's experiences with PRRT

Discussion

Interested in hearing people's experiences with PRRT

Neuroendocrine Tumors (NETs) | Last Active: Oct 16, 2023 | Replies (138)
Comment receiving replies
@sophiarose

Lyons1234
I just read your post I see you were on Everolimus
I am to starting next week
My NET of unknown primary is spreading it is in a liver lymph node and now my spine
Please I have done my reading on side effects and success rates
I need to find someone who has been on the medication and see what they did to help with the side effects and of course to hear there story of how the drug worked
Thank you

Jump to this post

Replies to "Lyons1234 I just read your post I see you were on Everolimus I am to starting..."
lyons1234 | @lyons1234 | Oct 6, 2023

Hi,
I used Everolimus for 4 weeks. I started getting mouth sores after about 3 weeks. Seems like a common side effect. My onocologist almost expected it and he said he could give me something for it. Ofcourse everyone is different. some people may have no side effects. Drs
wanted me to stop taking Everolimus when I began PRRT. The cold soars went away after I stoped taking it. It didn't make me feel nauseous, fatigued, or give me secretory bowel movements. Although I have no factual measure of its effectiveness, since I only took it for
a short time. I felt it was helping with symptoms, and I would continue taking it, if necessary.
I guess you just have to try it and see what works. They could take a biopsy of your tumor
and examine it to see what might work best for you.
Good Luck
Afinitor is the common name for Everolimus it easier to pronounce and spell.
Taking Everolimus (10mg) wasn't a big deal but I would opt next time for some cold sore meds.

VIEW AND REPLY