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NePtune Trial and surgery questions

Prostate Cancer | Last Active: Mar 28 5:35pm | Replies (5)

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@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.

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Replies to "I would give you a solutions for hot flashes, but if you’re only going to be..."

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.