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NePtune Trial and surgery questions
Prostate Cancer | Last Active: 6 days ago | Replies (5)Comment receiving replies
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.....
Replies to "Thanks for your input. I'm 2 months into the trial and so far so good- I..."
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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.