Been dealing with advanced prostate cancer since 5/20 and have undergone several treatment options available. Life has changed significantly because of the treatments but I feel good generally and looking forward to the next viable treatment. Happy to share experiences with any other advanced prostate cancer patients.
Just completed 6 rounds of Lutetium-177 - Advanced Prostate...
Just completed 6 rounds of Lutetium-177
Did you have a final PSMA PET scan upon completion? How has PSA changed?
Hi Tall_Allen! I am scheduled to have my final PSMA scan on 9/26/23. Upon starting the LU-177 treatments my PSAhad risen to 9 even with chemo therapy and within 2 months my PSA dropped to undetectable <.044 and then began to rise while continuing LU-177 treatments. My current PSA sits at 3.7 but had risen to a high of 4.5 during LU-177 treatments. I am worried about my pc mutating to NEPC. I asked my GU Oncologist if I could also get an FDG scan in addition to the PSMA scan and he quickly replied that insurance wouldn't pay for both scans. Is an FDG scan the best test to determine NEPC to ensure that we are treating the right cancer that I have?
I don't understand why you are worried about NEPC specifically. It is rare. FDG is not a test for NEPC, which can be determined from a tissue biopsy only.
Thanks for the question Tall_Allen. Truth be told, I don't have any reason why I would be worried about NEPC with the exception of the fact the last CT scan that I had after my final Pluvicto scan showed disease progression with previously found tumors increasing in size and 2 new lesions in 2 ribs. I am assuming that more substantiated conclusions can be drawn when my final Pluvicto diagnostic scans are completed. In the face of disease progression, the question is "are we treating the appropriate cancer?". From what I've read NEPC is on the rise and indications are pointing toward extended ADT treatments might be playing a role in the increased number of NEPC cases. My reality is that I really don't know what I don't even know at this juncture so just looking to begin some conversations to help me navigate managing this crazy disease.
NEPC is a very particular phenotype that results from de-differentiation. Many kinds of PCa do not express PSMA and many do not express PSA. Frankly, I'd be more concerned about a less differentiated phenotype than NEPC, which is a far more common situation in heavily treated patients..
I would encourage you to biopsy a recent metastasis and get a full workup if there is enough tissue - histology, IHC, and genomics. Scans will tell you nothing.
I’d be interested in hearing about your experience with Lu177. My husband is about to start.
I tolerated the Pluvicto well with the exception of some nausea from time to time. I can tell you also that the Pluvicto was easier that Docetaxel. Would happy to chat anytime if you think that might be helpful.
That’s helpful. My biggest concern right now is driving 6 hours on a winding Hwy 1 to get home after the treatment. How soon after the treatment did you have nausea?
I didn't have any nausea issues until a couple of days after the injection. Drove myself to and from all of my appointments but that's only a half hour drive for me. I felt perfectly fine after each treatment and immediately resumed normal activity of going to the gym, golfing and taking walks with my dog. The nuclear medicine doctors told me to take the nausea medicine around the clock regardless if I thought that I needed it or not which I think helped.
I just finished my sixth treatment, but have not had my final scans. My experience after each treatment I had a slight increase in PSA, stands at 14,5 at present. Scans will be done in six weeks. I did not tolerate the procedure well with constipation my major problem.
I too completed 6 infusions last year. Initial response was very good but not durable. PSA slowly going up. Have moved onto BAT with some again initial positive results. QOL has improved as well.
What were the results after the pluvicto Pluvicto
Being a nobody....... all I ever read here is no good for Pluvicto......... (just to let you know when I used to be a somebody I was somebody).....
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 09/15/2023 2:38 PM DST