Hi Everyone,
I am newly diagnosed with aggressive prostate cancer (Gleason 9) and I am going to participate in a trial before surgery.
Some background - last month (Dec 2024) I was diagnosed with aggressive prostate cancer with a Gleason score of 9 . I am BRCA2 positive which puts me in a higher class of developing aggressive prostate cancer. What triggered the testing was my PSA went from a 3.8 to 5 over a 6 month period and my urologist first ordered an ultrasound (showed nothing), then an MRI which showed cancer contained in the prostate and followed with a biopsy which Gleason graded the cancer a 9. Just completed my PSMA PET scan and the scan agreed with the MRI that the cancer is contained inside of my prostate.
I will be having surgery but was invited to participate in the NePtune trial. The trial is a drug therapy of a PARP inhibitor (Olaparib ) + LHRH agonist for 6 months followed by surgery. The idea is to attack the cancer before surgery to give me a better chance of not having a reoccurrence or pushing reoccurrence much further down the road. Because of my genetic defect I do have a higher risk of reoccurrence. So far the findings of the trial have been very good with many of the participants showing no cancer in their prostate when tissues were examined after surgery.
I'm not really looking forward to the side effect of these drugs but i figure i can tough it out for 6 months if it helps me down the road. i have 2 questions: 1) has anyone participated in this study and if so how was your experience. 2)has anyone had experience with the drugs in this trial - they will be giving me Olaparib (pills) along with LHRH agonist (not sure which one) as a monthly injection. I know everyone is different but I'm interested in anyone who has had either or both of these drugs and what your experience was while taking them.
I should mention that since Covid I really haven't done a good job of staying in shape. I was a regular at the gym before but haven't been very good at working out after. Since learning I have prostate cancer I've been going more regularly but that has only been going on for a month. The one thing the PET scan found was that I have moderate gynecomastia which was a little surprising and kind of concerning because I know some of these drug therapy's can increase in breast size and starting off behind the 8 ball certainly has me concerned.
I am scheduled for my workups and meet with the team on Tuesday next week. I would like to get some feedback to help me ask questions about the drugs and possibly the trial when I meet with them. Any help or experience you can share would be greatly appreciated.
I'm glad I found this forum and looking forward to reading posts from those who have been though different therapy's and their experiences.
Hello JMacPA
A warm welcome to the Macmillan Online Prostate Community, although I am so sorry to find you here. I am Brian one of the Community Champions here on the Community, in fact I am also a member of the "Gleason 9 Club
.
I can't answer your post as I have been down the HT/RT route (you can read my journey by clicking on my name or avatar). We have plenty of Community members who have had surgery but I can't think of many who have had Olaparib. I have searched the Community and come up with these links Search for Olaparib (Prostate Forum).
I hope this helps. I wish you well on this trial, please keep us posted. If I can do anything else for you please do let me know.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
