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.
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.....