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Living with Neuroendocrine NETS, any advice?
Neuroendocrine Tumors (NETs) | Last Active: 3 hours ago | Replies (63)Comment receiving replies
@hollywood819: thank you for your post- this info will help many of us! I have a question: The clinical trial study you are receiving -is it called Lutathera or PRRT Alpha vs. Beta treatment?
I just finished a Beta Lutathera (PRRT) 4 session infusion treatment (6mo) and got great results on my NET Sm. Intestine primary w/ liver metastases tumors: significant tumor shrinkage with some completely diminished!
I am very interested in your Beta vs. Alpha experience and the conclusion of this trial’s recommendation for Alpha’s treatment. Please update your experience as the treatment progresses!! New NET treatment options are vital to all NET patient’s quality of life! Thank you for your willingness to share with me. Best health to you, Bette
Replies to "@hollywood819: thank you for your post- this info will help many of us! I have a..."
@dbamos1945 btw, congrats on your results! The industry finds new drugs daily, and from what I've learned, are finding drugs' which work well with one cancer can be applied to treat other cancers. Ex, my drug was initially designed to treat prostate cancer. A trial in Germany showed significance positive results and it just so happens the "receptors" in prostate cancer are almost identical to the receptors in LiverNET, hence the trial for NET cancer patients. Sidenote, starting reading a book recommended by my Radiation Technician called
The Emperor of All Maladies: A Biography of Cancer. I highly recommend it to anyone who has cancer.
Stay positive!
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https://www.cancer.gov/research/participate/clinical-trials-search/v?id=NCI-2023-06702&r=1
https://www.clinicaltrials.gov/study/NCT05636618?term=Targeted%20Alpha-Particle%20Therapy%20for%20Advanced%20SSTR2%20Positive%20Neuroendocrine%20Tumors&rank=1
Perspective Therapeutics is the drug manufacturer. Formerly Viewpoint Molecular Targeting, Inc. The protocol Number VMT-α-
NET-T101 / VMT-α-NET
The links above provides details on the trial. I believe the drug is Octreotate, or DOTATATE (hard to keep up with generic and pharmaceutical naming). I've had limited side effects and am hoping for better results after the 2nd infusion.