NePtune Trial and surgery questions

Posted by jmacpa @jmacpa, Jan 17 7:17am

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.

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jeffMar | @jeffmarc | Jan 17 10:57am

You can do it more than one way. I Have BRCA2 And after 15 years, I have not yet taken a parp inhibitor. I had surgery and 3.5 Years later, radiation. 2 1/2 years later, I went on Lupron and 4 years later Zytiga, which kept my PSA down for 2 1/2 years. After some AFIB Issues I switched over to Nubeqa 18 months ago. The last 14 months I’ve been undetectable. I became stage four about six years ago. I did not find out I was BRCA2 Until four years ago.

Before starting Nubeqa I took olaparib for a week. I had terrible nightmares on it. I talked to my oncologist and convinced them that I should be on Nubeqa before the PARP And she was fine with it.

My PSA was 3+4 before surgery and 4+3 after so it is not as aggressive as yours.

My oncologist has always discouraged my switching to a PARP Because it is very hard on the blood counts.

I figured that When Nubeqa Stops working I will start taking the PARP, I am concerned about the wbc, RBC and platelets, Which are just some of the things I can have problems with when on a PARP inhibitor.

Depending on your cancer case some doctors want to use a PARP Inhibitor early. That is the study you are being asked to join right now. I can’t tell you if that will work better and neither can they because this is a study.

Sounds like they want to give you Lupron or Eligard for the LHRH, I was on Lupron for eight years. It has a lot of side effects as does a PARP inhibitor. For me, the hot flashes, Loss of muscles, weakening of the bones and brain fox we’re not as bad as dying early from prostate cancer. Some people get a lot of fatigue from Lupron, I didn’t have that particular problem. In my case, I found that if I reduced my drugs at all, my PSA would rise immediately, BRCA2 can be a real problem.

I know somebody who was still alive after 26 years with BRCA2. He took olaparib For about five years as his last drug treatment. It worked for him, But later in his journey.

Keep up the exercise. While I walk at least 3 1/2 miles every day for the last six or seven years, my muscles deteriorated a lot. I found I could not get off the floor without help or being able to lean onto a chair or a bed to get up. I started going to the gym three days a week and working with a personal trainer one of those days. After three months, I could finally get off the floor without help. Just something to think about, you want to make sure you keep up that exercise It can also help a lot with the fatigue that happens from taking those LHRH drugs.

I would highly recommend you get a decipher test. They can tell you more about how aggressive the cancer can be than your Gleason.