Greeting everyone!
So 2 weeks from today I will be going bionic with Dr. Levine in Illinois.
My profile is a bit outdated, so an update. Diagnosed with Prostate cancer in late 2020, Had a robotic prostatectomy 3 years ago in March of 2021 - At that point pills were not enough so I joined the Trimix club which worked well until I completed my 2nd round of cancer treatment called salvage therapy incl. ADT and 38 radiation treatments.
I knew going into the salvage treatment I would be taking another hit so I got on Dr. Levine's waiting list last summer.
Have been learned a lot from Frank Talk, and with everyone's advice I have been going thru this with my head held high (no pun intended). Big Thanks to so many (too many to mention here) that have contributed their stories, offered advice, encouragement, answered questions, shared PMs and several very helpful phone calls with myself.
The Countdown Begins
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- Posts: 78
- Joined: Sat Mar 26, 2022 6:03 pm
The Countdown Begins
67 yrs old, married ro my beautiful wife for 43 years..oral meds did the job beginning at 58 until undergoing RPS at age 64, Trimix worked until it didn't. Implanted with 20cm Titan (no RTEs) by Dr Levine on 3/18/24
Re: The Countdown Begins
Congratulations on the best thing that you can do. I am setup for the 25th of this month myself. At 63 I am so looking forward to being hard again. Best to you buddy.
Re: The Countdown Begins
CuzznClark wrote:Greeting everyone!
So 2 weeks from today I will be going bionic with Dr. Levine in Illinois.
My profile is a bit outdated, so an update. Diagnosed with Prostate cancer in late 2020, Had a robotic prostatectomy 3 years ago in March of 2021 - At that point pills were not enough so I joined the Trimix club which worked well until I completed my 2nd round of cancer treatment called salvage therapy incl. ADT and 38 radiation treatments.
I knew going into the salvage treatment I would be taking another hit so I got on Dr. Levine's waiting list last summer.
Have been learned a lot from Frank Talk, and with everyone's advice I have been going thru this with my head held high (no pun intended). Big Thanks to so many (too many to mention here) that have contributed their stories, offered advice, encouragement, answered questions, shared PMs and several very helpful phone calls with myself.
Hey, I am in the same Boat regarding the radical prostatectomy.
A quick question, did the ADT take your libido way down?
I just had a PSA re-check and sadly my numbers have gone up to .08
My Doctor has me in a "wait and see " protocol for another 6 months.
There IS some cancer cells floating around in me still, I had the Operation for prostate removal and 38 radiations and the next step is the ADT treatment, but I'm in a holding pattern now.
Can you please tell me what the ADT therapy did to/for you?
Guys , if you're reading this.... PLEASE get your PSA numbers checked on the regular if you are over 40 years of age.
Prostate cancer is the #1 cancer in men.
AMS 700 installed 12/22/22
REAR TIP Extender 5.0CM MR Conditional
AMS 700 SPHERICAL RESERVOIR 100 ML.
AMS 700 LGX INFRA PUBIC 18 cm
Dr. Jeffrey Loh Doyle- USC KECK
Prostate cancer survivor- RP performed 8/20
56, Marathon runner, John Muir Trail fanatic.
REAR TIP Extender 5.0CM MR Conditional
AMS 700 SPHERICAL RESERVOIR 100 ML.
AMS 700 LGX INFRA PUBIC 18 cm
Dr. Jeffrey Loh Doyle- USC KECK
Prostate cancer survivor- RP performed 8/20
56, Marathon runner, John Muir Trail fanatic.
-
- Posts: 78
- Joined: Sat Mar 26, 2022 6:03 pm
Re: The Countdown Begins
@hikerman
Great advice to all men to stay on top of their PSA - couldn't agree more.
So I had my second round of therapy (salvage therapy) when my PSA jumped from .02 to .05. The ADT I was put on was an oral pill called Orgovyx. The worst side effect for me was afternoon fatigue, I had a few hot flashes near the end of the 6 month period but not bad. Yes my Libido dropped but I still had some interest (went from weekly sex to about every 3 weeks and did take some extra determination and stimulation).
The good thing about the oral ADT is you recovery quickly (and in my opinion do not completely lose your Libido. I have heard that the old-school injectable slow-release Lupron is more challenging and for some more side-effects.
Great advice to all men to stay on top of their PSA - couldn't agree more.
So I had my second round of therapy (salvage therapy) when my PSA jumped from .02 to .05. The ADT I was put on was an oral pill called Orgovyx. The worst side effect for me was afternoon fatigue, I had a few hot flashes near the end of the 6 month period but not bad. Yes my Libido dropped but I still had some interest (went from weekly sex to about every 3 weeks and did take some extra determination and stimulation).
The good thing about the oral ADT is you recovery quickly (and in my opinion do not completely lose your Libido. I have heard that the old-school injectable slow-release Lupron is more challenging and for some more side-effects.
67 yrs old, married ro my beautiful wife for 43 years..oral meds did the job beginning at 58 until undergoing RPS at age 64, Trimix worked until it didn't. Implanted with 20cm Titan (no RTEs) by Dr Levine on 3/18/24
Re: The Countdown Begins
CuzznClark wrote:@hikerman
Great advice to all men to stay on top of their PSA - couldn't agree more.
So I had my second round of therapy (salvage therapy) when my PSA jumped from .02 to .05. The ADT I was put on was an oral pill called Orgovyx. The worst side effect for me was afternoon fatigue, I had a few hot flashes near the end of the 6 month period but not bad. Yes my Libido dropped but I still had some interest (went from weekly sex to about every 3 weeks and did take some extra determination and stimulation).
The good thing about the oral ADT is you recovery quickly (and in my opinion do not completely lose your Libido. I have heard that the old-school injectable slow-release Lupron is more challenging and for some more side-effects.
Thank you
I'm definitely heading into uncharted waters with these treatments.
Holy shit is this a royal pain in the ass.
Thanks for the 411.
Best.
AMS 700 installed 12/22/22
REAR TIP Extender 5.0CM MR Conditional
AMS 700 SPHERICAL RESERVOIR 100 ML.
AMS 700 LGX INFRA PUBIC 18 cm
Dr. Jeffrey Loh Doyle- USC KECK
Prostate cancer survivor- RP performed 8/20
56, Marathon runner, John Muir Trail fanatic.
REAR TIP Extender 5.0CM MR Conditional
AMS 700 SPHERICAL RESERVOIR 100 ML.
AMS 700 LGX INFRA PUBIC 18 cm
Dr. Jeffrey Loh Doyle- USC KECK
Prostate cancer survivor- RP performed 8/20
56, Marathon runner, John Muir Trail fanatic.
Re: The Countdown Begins
Been on orgovyx for two years now. My psa is virtually non existent, no side effects and my libido somehow is good. I don't know if you pay for yours. I'm in their program and they have been footing the bill. I know the cost could be around $2400 a month and if I had had to pay I would have settled for injections instead.
Re: The Countdown Begins
Best wishes bro. You'll soon be all done and on the recovery path before you know it.
Likewise-- this forum helped me beyond and more.
I'm only just 3 weeks implanted and it was nowhere near as difficult as I expected .
I pumped it up yesterday and it is like a weapon of mass pussy destruction (in the most kindest manner).
Likewise-- this forum helped me beyond and more.
I'm only just 3 weeks implanted and it was nowhere near as difficult as I expected .
I pumped it up yesterday and it is like a weapon of mass pussy destruction (in the most kindest manner).
Age 50. ED since 25 yrs old. Used pills etc. Last 10 years, everything, including injections --did not work. Doppler test diagnosed VL. Implanted Coloplast Titan 22cm UK NHS ( --13/02/2024 Coloplast with Dr Win Gan Lee -- UCLH London UK)
Re: The Countdown Begins
Alex258 wrote:Been on orgovyx for two years now. My psa is virtually non existent, no side effects and my libido somehow is good. I don't know if you pay for yours. I'm in their program and they have been footing the bill. I know the cost could be around $2400 a month and if I had had to pay I would have settled for injections instead.
Hi Alex.
Yeah, my insurance foots that bill totally, I thought I had this damn thing under control and this little bastard rears it's ugly head again.
My father had radioactive pellets put into his prostate 25 years ago, never had a problem.
Me?
Not so lucky.
Anyhow, yeah the Doctor told me thIs treatment ,(Hormone)basically shuts down your testosterone completely, hence no cancer growth.
It's just screwed up, I get things refired back up in the. Sack with the Mrs and now to fix this Prostate cancer issue is to shut my testosterone off
God willing, I will have your good luck.
Sorry to vent, but this is frustrating as hell.
Best to all
AMS 700 installed 12/22/22
REAR TIP Extender 5.0CM MR Conditional
AMS 700 SPHERICAL RESERVOIR 100 ML.
AMS 700 LGX INFRA PUBIC 18 cm
Dr. Jeffrey Loh Doyle- USC KECK
Prostate cancer survivor- RP performed 8/20
56, Marathon runner, John Muir Trail fanatic.
REAR TIP Extender 5.0CM MR Conditional
AMS 700 SPHERICAL RESERVOIR 100 ML.
AMS 700 LGX INFRA PUBIC 18 cm
Dr. Jeffrey Loh Doyle- USC KECK
Prostate cancer survivor- RP performed 8/20
56, Marathon runner, John Muir Trail fanatic.
-
- Posts: 78
- Joined: Sat Mar 26, 2022 6:03 pm
Re: The Countdown Begins
Alex,
I totally understand the frustration and anxiety. I recovered from the robotic surgery and after a year of fumbling with more pills and a pump, I resorted to a successful 18 mo. run with Trimix. THEN a recurrence requiring salvage therapy with radiation and ADT, and now another ED step backward hence the need to go bionic.
This PC dance completely sucks, the good news is that there are lots of advancements in the works that should help us persevere and become victorious over the "C" word. Hang in there and feel free to PM me if you ever want to compare notes
Take Care!
I totally understand the frustration and anxiety. I recovered from the robotic surgery and after a year of fumbling with more pills and a pump, I resorted to a successful 18 mo. run with Trimix. THEN a recurrence requiring salvage therapy with radiation and ADT, and now another ED step backward hence the need to go bionic.
This PC dance completely sucks, the good news is that there are lots of advancements in the works that should help us persevere and become victorious over the "C" word. Hang in there and feel free to PM me if you ever want to compare notes
Take Care!
67 yrs old, married ro my beautiful wife for 43 years..oral meds did the job beginning at 58 until undergoing RPS at age 64, Trimix worked until it didn't. Implanted with 20cm Titan (no RTEs) by Dr Levine on 3/18/24
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- Posts: 78
- Joined: Sat Mar 26, 2022 6:03 pm
Re: The Countdown Begins
I am dropping this note for the purpose of recovery planning, but first what I do know:
I am scheduled for March18th with Dr. Levine.
The implant will be a titan via Pentscrotol (sp?)
I will go home deflated for the first 3~5 weeks.
So in addition to Icing, babysocks, and eventual heat, anything else I should obtain in advance?
(lots of comments on FT about Sepratec briefs - but I think that is helpful for those who go home with some degree of inflation?)
I am scheduled for March18th with Dr. Levine.
The implant will be a titan via Pentscrotol (sp?)
I will go home deflated for the first 3~5 weeks.
So in addition to Icing, babysocks, and eventual heat, anything else I should obtain in advance?
(lots of comments on FT about Sepratec briefs - but I think that is helpful for those who go home with some degree of inflation?)
67 yrs old, married ro my beautiful wife for 43 years..oral meds did the job beginning at 58 until undergoing RPS at age 64, Trimix worked until it didn't. Implanted with 20cm Titan (no RTEs) by Dr Levine on 3/18/24
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