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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.

REPLY
1 reply
jmacpa | @jmacpa | Mar 28 9:40am
In reply to @jeffmarc "You can do it more than one way. I Have BRCA2 And after 15 years, I..." + (show)
@jeffmarc

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.

Jump to this post

Thanks for your input. I'm 2 months into the trial and so far so good- I am 1/3 of the way through the trial and in 2 months my PSA has gone from a high of 7 down to .77 so a pretty dramatic drop.

I had some initial stomach issues with the olaparib but they have subsided. So far my blood counts have all been slightly lower but still within the normal range. The biggest side effects i'm having now more with the Lupron Depot than olaparib. My testosterone levels < 20 - i'm having a lot of hot flashes, feel weaker, and get occassional headaches. The other thing that kind of bothers me with Lupron is the fact that my testicles have gotten significantly smaller. I'm hoping that after I complete the trial (6 months) that my testosterone will recover and my hormone levels will get close to normal. I'm am going to the gym and trying to at least maintain my current muscle status.

It will be nice when i finish the treatment because I can say i'm tolerating it but i never feel "good". As I said to someone - there are times in my life when i was sick and a doc prescribed an antibiotic - the antibiotic wasn't great but within days it helped me with my illness so i dealt with the side effects to get better. I'm trying to relate that to my prostate cancer except its not a 7 to 10 day course its 6 months. And when I was diagnosed with Prostate Cancer I never felt ANY symptoms and would never have known I had it if my urologist hadnt done a MRI, So its not like I ever felt sick but I'm certainly grateful that my doc ordered the test and caught the cancer while it was still contained in my prostate.

I have to be honest - taking these almost feels like I'm being poisoned but I have to have to have faith they will help and I am encouraged that my PSA has significantly dropped.

And finally, I'm concerened and NOT looking forward to surgery because of the possible side effects. At the end of the trial I will have another MRI and PSMA PET scan. If the scans show NO cancer I'm certainly going to ask the question - so why exactly are we doing surgery if the scans show no cancer? I'm guessing there will be a reason esp with my BRCA2 genetic defect but I'll need to hear that explained to me (in detail) before I go under the knife.

More to follow.....

REPLY
1 reply
jeffMar | @jeffmarc | Mar 28 1:25pm
In reply to @jmacpa "Thanks for your input. I'm 2 months into the trial and so far so good- I..." + (show)
@jmacpa

Thanks for your input. I'm 2 months into the trial and so far so good- I am 1/3 of the way through the trial and in 2 months my PSA has gone from a high of 7 down to .77 so a pretty dramatic drop.

I had some initial stomach issues with the olaparib but they have subsided. So far my blood counts have all been slightly lower but still within the normal range. The biggest side effects i'm having now more with the Lupron Depot than olaparib. My testosterone levels < 20 - i'm having a lot of hot flashes, feel weaker, and get occassional headaches. The other thing that kind of bothers me with Lupron is the fact that my testicles have gotten significantly smaller. I'm hoping that after I complete the trial (6 months) that my testosterone will recover and my hormone levels will get close to normal. I'm am going to the gym and trying to at least maintain my current muscle status.

It will be nice when i finish the treatment because I can say i'm tolerating it but i never feel "good". As I said to someone - there are times in my life when i was sick and a doc prescribed an antibiotic - the antibiotic wasn't great but within days it helped me with my illness so i dealt with the side effects to get better. I'm trying to relate that to my prostate cancer except its not a 7 to 10 day course its 6 months. And when I was diagnosed with Prostate Cancer I never felt ANY symptoms and would never have known I had it if my urologist hadnt done a MRI, So its not like I ever felt sick but I'm certainly grateful that my doc ordered the test and caught the cancer while it was still contained in my prostate.

I have to be honest - taking these almost feels like I'm being poisoned but I have to have to have faith they will help and I am encouraged that my PSA has significantly dropped.

And finally, I'm concerened and NOT looking forward to surgery because of the possible side effects. At the end of the trial I will have another MRI and PSMA PET scan. If the scans show NO cancer I'm certainly going to ask the question - so why exactly are we doing surgery if the scans show no cancer? I'm guessing there will be a reason esp with my BRCA2 genetic defect but I'll need to hear that explained to me (in detail) before I go under the knife.

More to follow.....

Jump to this post

I would give you a solutions for hot flashes, but if you’re only going to be on ADT for six months, it doesn’t make any sense to do a lot about it. Have they told you that after surgery you won’t need to go back on ADT? It doesn’t seem like it from what you’re saying.

I didn’t realize I would be responding to you in more than one message track.

I took olaparib for 5 days after I stopped abiraterone, I had nightmares every night, something I have not ever had. I talked to my oncologist and said there’s no reason for me to move to olaparib yet, I should try getting on Darolutamide, And she agreed. Been on Darolutamide for 18 months and undetectable for 16 of them. First time in seven years, I’ve been undetectable for more than one month.

Going on a PARP Inhibitor concerns me, however. My red blood cell count, Hgb and hematocrit are all low, Below the minimum. I know that getting on a PARP Inhibitor is harder on those particular blood markers not sure I can tolerate it. I just hope that getting off Darolutamide will improve those particular blood counts as the PARP brings them back down

The technique you are using of going on the PARP Early avoids all the issues since you start off with normal blood counts.

This issue with the testicles getting smaller, seems to be pretty common. Even though I was on ADT for 8 years I never had that occur. Seven of those years I was on Lupron. Maybe that’s why, after eight years on ADT, my testosterone is coming back quickly. We thought it would never come back.

I’ve never had The fatigue problem with Lupron. I’ve always been pretty hyper. Maybe it slowed me down to normal. The thing is I exercise, There is a track across the street from my house and I go there twice a day and walk about a mile, Try to do it fast, I can’t run anymore. Recently, I’ve been going to the gym three times a week. Being on Lupron quickly, deteriorate your bones and your muscles. You need to exercise and do weightlifting regularly in. Surprise me about nine months ago when I found I could not get off the ground if I fell. I now can do it though I’m not the speediest guy to get up. Of course I am 77, so I need to be careful.

REPLY
1 reply
jmacpa | @jmacpa | Mar 28 2:01pm
In reply to @jeffmarc "I would give you a solutions for hot flashes, but if you’re only going to be..." + (show)
@jeffmarc

I would give you a solutions for hot flashes, but if you’re only going to be on ADT for six months, it doesn’t make any sense to do a lot about it. Have they told you that after surgery you won’t need to go back on ADT? It doesn’t seem like it from what you’re saying.

I didn’t realize I would be responding to you in more than one message track.

I took olaparib for 5 days after I stopped abiraterone, I had nightmares every night, something I have not ever had. I talked to my oncologist and said there’s no reason for me to move to olaparib yet, I should try getting on Darolutamide, And she agreed. Been on Darolutamide for 18 months and undetectable for 16 of them. First time in seven years, I’ve been undetectable for more than one month.

Going on a PARP Inhibitor concerns me, however. My red blood cell count, Hgb and hematocrit are all low, Below the minimum. I know that getting on a PARP Inhibitor is harder on those particular blood markers not sure I can tolerate it. I just hope that getting off Darolutamide will improve those particular blood counts as the PARP brings them back down

The technique you are using of going on the PARP Early avoids all the issues since you start off with normal blood counts.

This issue with the testicles getting smaller, seems to be pretty common. Even though I was on ADT for 8 years I never had that occur. Seven of those years I was on Lupron. Maybe that’s why, after eight years on ADT, my testosterone is coming back quickly. We thought it would never come back.

I’ve never had The fatigue problem with Lupron. I’ve always been pretty hyper. Maybe it slowed me down to normal. The thing is I exercise, There is a track across the street from my house and I go there twice a day and walk about a mile, Try to do it fast, I can’t run anymore. Recently, I’ve been going to the gym three times a week. Being on Lupron quickly, deteriorate your bones and your muscles. You need to exercise and do weightlifting regularly in. Surprise me about nine months ago when I found I could not get off the ground if I fell. I now can do it though I’m not the speediest guy to get up. Of course I am 77, so I need to be careful.

Jump to this post

Thanks for your feedback.

The trial I'm in is pretty strict on what you can and cant take. I'm not allowed to take any herbal supplements - which i did before this started. I can only take a daily vitamin and a vit D (because i'm deficient). My onco asked about taking Black Cohosh tea for hot flashes - they told her no. She had some other prescription drug suggestions but i turned them all down and said i'll deal with the hot flashes. i'm not big on taking any drugs unless they are 100% necessary like the lupron/olaparib combo for cancer.

I heard a doc on a broadcast say that once you go over 5 meds its almost impossible to predict the interactions because they cant possibly test of all of the possible drug combinations. my dad who passed away a few years ago at 85 and was on 19 meds - I'm sure those were playing havoc with his body. my mom is 90 and is on NO meds - NONE. docs are floored when they ask her and she says she takes nothing.

hopefully i can make it another 4 months without the olaparib doing too much to my counts because i would like to finish the trial to get the best results before my surgery.

I did read about testicles getting smaller on Lupron but i just didnt realize by how much. it sucks but i'm hoping everything comes back when i'm done. from what i read it should but the recovery time for your testosterone seems to vary - i've read from 6 to 18 months. hoping its not 18 months but if it is i'll deal with it.

i am also lifting weights, in group exercises. and walking so i'm keeping active and my doc said its important to that and it should help with the hot flashes. I"m 66 so i'm not exactly young but i'm not too old for the prostate surgery option. i'll update here as i move along the process - surgery is scheduled end of July a few days after the trial ends.

REPLY
1 reply
jeffMar | @jeffmarc | Mar 28 5:35pm
In reply to @jmacpa "Thanks for your feedback. The trial I'm in is pretty strict on what you can and..." + (show)
@jmacpa

Thanks for your feedback.

The trial I'm in is pretty strict on what you can and cant take. I'm not allowed to take any herbal supplements - which i did before this started. I can only take a daily vitamin and a vit D (because i'm deficient). My onco asked about taking Black Cohosh tea for hot flashes - they told her no. She had some other prescription drug suggestions but i turned them all down and said i'll deal with the hot flashes. i'm not big on taking any drugs unless they are 100% necessary like the lupron/olaparib combo for cancer.

I heard a doc on a broadcast say that once you go over 5 meds its almost impossible to predict the interactions because they cant possibly test of all of the possible drug combinations. my dad who passed away a few years ago at 85 and was on 19 meds - I'm sure those were playing havoc with his body. my mom is 90 and is on NO meds - NONE. docs are floored when they ask her and she says she takes nothing.

hopefully i can make it another 4 months without the olaparib doing too much to my counts because i would like to finish the trial to get the best results before my surgery.

I did read about testicles getting smaller on Lupron but i just didnt realize by how much. it sucks but i'm hoping everything comes back when i'm done. from what i read it should but the recovery time for your testosterone seems to vary - i've read from 6 to 18 months. hoping its not 18 months but if it is i'll deal with it.

i am also lifting weights, in group exercises. and walking so i'm keeping active and my doc said its important to that and it should help with the hot flashes. I"m 66 so i'm not exactly young but i'm not too old for the prostate surgery option. i'll update here as i move along the process - surgery is scheduled end of July a few days after the trial ends.

Jump to this post

A couple of guys have said that eating tofu daily prevented them from having hot flashes. When mine were the worst, I had depo-provera shots and they worked real well. Not sure how long you’re going to be on ADT, Since it sounds like only a few more months, you should have no problem with hot flashes long-term. There a device I use, the Wave 2 by embrlabs.com. It works well for a lot of people, but not for everyone. It was great to stop the night hot flashes. Have you had a quick enough and stop the day ones but if nothing else, it reduces the intensity..

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