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  • 39yo with Gleason 9...UPDATES

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    Old 06-20-2021, 07:43 AM   #16
    guitarhunter
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by 39cancer View Post
    Rather than start a new thread, figured I'd ask here. How many of you guys with had RPs dealt with pelvic floor pain after surgery? I basically need a donut pillow all the time. And I've got these random pains that will shoot through my penis and then some pretty intense spasms/cramps in the rectum area. My assumption is that since I'm only two weeks out, this is pretty much normal. But holy balls it's been the worst part of this for me and I don't really remember it being discussed. Continence-wise I'm already going without pads or anything, so I guess it's not all bad.
    I used a donut when I was riding in a car and sitting on something that wasn't well-cushioned for about 4 weeks. It was still tender to sit on hard surfaces for a few more weeks but now it's all fine. You're one of the lucky ones to be without pads already. I'm just over 4 months post RP and I'm leaking between 0-3ml of urine a day. The stressful days and active days are the higher days and weekends i'm usually at the zero level.

     
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    Old 06-20-2021, 12:48 PM   #17
    39cancer
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by guitarhunter View Post
    I used a donut when I was riding in a car and sitting on something that wasn't well-cushioned for about 4 weeks. It was still tender to sit on hard surfaces for a few more weeks but now it's all fine. You're one of the lucky ones to be without pads already. I'm just over 4 months post RP and I'm leaking between 0-3ml of urine a day. The stressful days and active days are the higher days and weekends i'm usually at the zero level.
    Yeah, I'm not sure what'll happen once I'm able to be more active. Once I start doing squats again all bets are off.... But so far I consider myself lucky and hopefully this bodes well for maintaining it post radiation.

    Right now I'm dealing with the Firmagon injection site pain. Holy crap does it hurt. But virtually none of the typical side effects from the hormones yet entering the fifth day. Fingers crossed.
    __________________
    40 years old
    09/20: Nodule found but not considered a problem. PSA 1.5.
    03/21: MRI: PIRADS 5, SV+, LN1. Biopsy: Gleason 9 (5+4). PSA still 1.5.
    05/21: RP performed. Final staging pT3a, LN1, M0. Negative margins. Gleason 9 (4+5). 4 positive nodes
    06/16/21: Started ADT - first Firmagon injection
    07/21/21: PSA 0.08. 2nd Firmagon injection. Started Zytiga.

     
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    Old 06-20-2021, 12:49 PM   #18
    39cancer
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by Prostatefree View Post
    Are they bladder spasms?

    Drink plenty of water. The temptation is to subconsciously manage incontinence by drinking less water.
    Most of the spasm stuff seems to have resolved, thankfully. Sitting on anything hard still sucks, but we're getting there slowly but surely.
    __________________
    40 years old
    09/20: Nodule found but not considered a problem. PSA 1.5.
    03/21: MRI: PIRADS 5, SV+, LN1. Biopsy: Gleason 9 (5+4). PSA still 1.5.
    05/21: RP performed. Final staging pT3a, LN1, M0. Negative margins. Gleason 9 (4+5). 4 positive nodes
    06/16/21: Started ADT - first Firmagon injection
    07/21/21: PSA 0.08. 2nd Firmagon injection. Started Zytiga.

     
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    Old 06-21-2021, 11:03 AM   #19
    john_ct1
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by 39cancer View Post
    Right now I'm dealing with the Firmagon injection site pain. Holy crap does it hurt. But virtually none of the typical side effects from the hormones yet entering the fifth day. Fingers crossed.
    Hi 39,


    Looks like we both got our first Firmagon shots around the same day. Except for injection site soreness I have no noticeable side effects. I'm exercising like crazy and switched to a plant base whole foods diet. Anything to mitigate side effects.

    -John
    __________________
    57 yo, family history of PCa, PSA 5.7, Free PSA 8.43%, DRE Neg, 5/26/21 Biopsy: Gleason 9, Grade 5, 16 of 20 cores positive mix of 5+4 and 4+5. Stage IIIc, cT2NxMx, CT shows a 3 cm x 2 cm diseased pelvic lymph node, Bone scan neg, 6/16/20 1st Firmagon injection.

     
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    Old 06-21-2021, 01:05 PM   #20
    john_ct1
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    Re: 39yo with Gleason 9...UPDATES

    Hi 39yo.

    We have similar G9 PCa. I'm early on my journey. One doc is recommending a RP and another is recommending RT+ADT. I see you chose RP. Were you given the option of RT+ADT only? It's a tough call. I like the idea cutting all that malignancy out of me but worried about the accumulative trauma and side effects of RP+RT+ADT.

    -John
    __________________
    57 yo, family history of PCa, PSA 5.7, Free PSA 8.43%, DRE Neg, 5/26/21 Biopsy: Gleason 9, Grade 5, 16 of 20 cores positive mix of 5+4 and 4+5. Stage IIIc, cT2NxMx, CT shows a 3 cm x 2 cm diseased pelvic lymph node, Bone scan neg, 6/16/20 1st Firmagon injection.

     
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    Old 06-21-2021, 01:30 PM   #21
    39cancer
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by john_ct1 View Post
    Hi 39yo.

    We have similar G9 PCa. I'm early on my journey. One doc is recommending a RP and another is recommending RT+ADT. I see you chose RP. Were you given the option of RT+ADT only? It's a tough call. I like the idea cutting all that malignancy out of me but worried about the accumulative trauma and side effects of RP+RT+ADT.

    -John
    If I remember correctly a lot of it was just based on the pathology after the RP. Basically if we had gotten lucky and had negative margins and no lymph nodes I had the option to just do nothing and see, but I was planning on ADT from the start no matter what the path report said. As far as RT, again, I think that was mostly based on the path report. Since they found 4 nodes the doc recommended it and I want to be as aggressive as possible.

    Thankfully so far everything from the surgery has recovered quickly (minus the ED, I guess) and the first week on the hormones has been a breeze. So I should be starting radiation from a pretty good spot at least.
    __________________
    40 years old
    09/20: Nodule found but not considered a problem. PSA 1.5.
    03/21: MRI: PIRADS 5, SV+, LN1. Biopsy: Gleason 9 (5+4). PSA still 1.5.
    05/21: RP performed. Final staging pT3a, LN1, M0. Negative margins. Gleason 9 (4+5). 4 positive nodes
    06/16/21: Started ADT - first Firmagon injection
    07/21/21: PSA 0.08. 2nd Firmagon injection. Started Zytiga.

     
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    Old 06-27-2021, 09:54 PM   #22
    39cancer
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by john_ct1 View Post
    Hi 39,


    Looks like we both got our first Firmagon shots around the same day. Except for injection site soreness I have no noticeable side effects. I'm exercising like crazy and switched to a plant base whole foods diet. Anything to mitigate side effects.

    -John
    Curious how you're doing another week into the Firmagon. I've gotten a few "warm" flashes the last few days but otherwise I wouldn't have known i had the shots. No other side effects at all so far.
    __________________
    40 years old
    09/20: Nodule found but not considered a problem. PSA 1.5.
    03/21: MRI: PIRADS 5, SV+, LN1. Biopsy: Gleason 9 (5+4). PSA still 1.5.
    05/21: RP performed. Final staging pT3a, LN1, M0. Negative margins. Gleason 9 (4+5). 4 positive nodes
    06/16/21: Started ADT - first Firmagon injection
    07/21/21: PSA 0.08. 2nd Firmagon injection. Started Zytiga.

     
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    Old 06-28-2021, 02:42 AM   #23
    john_ct1
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by 39cancer View Post
    Curious how you're doing another week into the Firmagon. I've gotten a few "warm" flashes the last few days but otherwise I wouldn't have known i had the shots. No other side effects at all so far.
    Same here! I had only one hot flash about a week ago. I hope it continues like this. I've made major lifestyle changes (exercise, diet, sleep, meditation) which I suspect is keeping side effects at bay.

     
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    Old 07-04-2021, 12:49 AM   #24
    GuyBMeredith
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    Re: 39yo with Gleason 9...UPDATES

    Have you felt effects on libido? One gent commented that without libido he didn't care and he didn't care that he didn't care about anything to do with sex I guess some gents would forget to even check on their level of libido.

     
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    Old 07-04-2021, 03:39 AM   #25
    john_ct1
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by GuyBMeredith View Post
    Have you felt effects on libido? One gent commented that without libido he didn't care and he didn't care that he didn't care about anything to do with sex I guess some gents would forget to even check on their level of libido.
    That's true. If you don't crave something you don't miss it much except as a deliberate thought. Personally I'm single and not in an intimate relationship. It dawns on me that I'm no longer distracted/tortured throughout the day by lustful thoughts. I still notice and focus on pretty woman but fantasize less. It's kind of liberating but in a sad way.

     
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    Old 07-04-2021, 10:26 AM   #26
    GuyBMeredith
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    Re: 39yo with Gleason 9...UPDATES

    If you desire to maintain sexual function and are otherwise not saddled with ED, it is necessary to have frequent erections. With no libido that falls off the list of things to do so it is necessary to put oneself on a regimen. It is easier with a loved one providing drive through their libido.

     
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    Old 07-04-2021, 06:49 PM   #27
    39cancer
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by GuyBMeredith View Post
    Have you felt effects on libido? One gent commented that without libido he didn't care and he didn't care that he didn't care about anything to do with sex I guess some gents would forget to even check on their level of libido.
    My libido is was a little screwed up after surgery anyway. I'm 5+ weeks out now. I'm 2.5 weeks on Firmagon and still don't feel any negative effects besides the hot flashes. Libido is a little harder to judge because, like I said, it was kind of screwy already but it's definitely not gone.
    __________________
    40 years old
    09/20: Nodule found but not considered a problem. PSA 1.5.
    03/21: MRI: PIRADS 5, SV+, LN1. Biopsy: Gleason 9 (5+4). PSA still 1.5.
    05/21: RP performed. Final staging pT3a, LN1, M0. Negative margins. Gleason 9 (4+5). 4 positive nodes
    06/16/21: Started ADT - first Firmagon injection
    07/21/21: PSA 0.08. 2nd Firmagon injection. Started Zytiga.

     
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    Old 07-10-2021, 12:08 AM   #28
    GuyBMeredith
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    Re: 39yo with Gleason 9...UPDATES

    I found trying to figure out libido was weird. Supposedly no sexual desire, yet I was admiring women's bums. Maybe habit? Dunno and never figured it out.

     
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    Old 07-14-2021, 01:23 PM   #29
    john_ct1
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    Re: 39yo with Gleason 9...UPDATES

    Hi 39,

    How are you coping with ADT side effects of late? I've completed my 28 days on Firmagon and today received my first Eligard shot (3 month duration shot). I did Firmagon first to avoid the testosterone spike. I found Firmagon to be very tolerable, just a few overnight hot flashes and some fatigue. I've been going hard daily at weight lifting plus cardio. I suspect this is been mitigating side effects, potentially by a large degree. Dr. Scholz claims that resistance training reduces ADT side effects by 85%. I hope I have the same luck while on Eligard.

    -John
    __________________
    57 yo, family history of PCa, PSA 5.7, Free PSA 8.43%, DRE Neg, 5/26/21 Biopsy: Gleason 9, Grade 5, 16 of 20 cores positive mix of 5+4 and 4+5. Stage IIIc, cT2NxMx, CT shows a 3 cm x 2 cm diseased pelvic lymph node, Bone scan neg, 6/16/20 1st Firmagon injection.

     
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    Old 07-14-2021, 01:28 PM   #30
    39cancer
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by john_ct1 View Post
    Hi 39,

    How are you coping with ADT side effects of late? I've completed my 28 days on Firmagon and today received my first Eligard shot (3 month duration shot). I did Firmagon first to avoid the testosterone spike. I found Firmagon to be very tolerable, just a few overnight hot flashes and some fatigue. I've been going hard daily at weight lifting plus cardio. I suspect this is been mitigating side effects, potentially by a large degree. Dr. Scholz claims that resistance training reduces ADT side effects by 85%. I hope I have the same luck while on Eligard.

    -John
    Still doing fine. If not for the hot flashes I wouldn't know I had had the shots. Round 2 of firmagon is next week for me. Just got back into the weight room this past week. Felt good. Considering myself very lucky so far....of course I haven't had my 3 month PSA check yet so there's always that chance it doesn't work
    __________________
    40 years old
    09/20: Nodule found but not considered a problem. PSA 1.5.
    03/21: MRI: PIRADS 5, SV+, LN1. Biopsy: Gleason 9 (5+4). PSA still 1.5.
    05/21: RP performed. Final staging pT3a, LN1, M0. Negative margins. Gleason 9 (4+5). 4 positive nodes
    06/16/21: Started ADT - first Firmagon injection
    07/21/21: PSA 0.08. 2nd Firmagon injection. Started Zytiga.

     
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