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Posted 5/30/2023 9:14 PM (GMT 0)
Just joined the group and I believe I found the forum for many of my questions and experiences.
It all started about 18 years ago with a biopsy of cancer in half the prostate. I had that half removed via Cryo surgery and was having normal PSA readings for 16 years and then it came back with a vengeance to metastatic status. I was put on the 6 month program of Eligard and the cancer was controlled, but the rest of me was a disaster. I had every side effect except the hot flashes, as they were only very mild and occasional. My mental state crashed i.e. depression, anxiety, feelings of hopelessness and despair, not to mention, ED that did not respond to the drugs.
Lost my reason to live and barely got through it with help from very low dose anti anxiety drugs and a little alcohol, but never together. I declined the next eligard implant and opted to just take my chances! Over the next year, my PSA and T levels began to rise again and had EMRT therapy at 10 very high doses to help destroy the PC and my right hip bone, where the cancer had spread. I am now on Orgovyx, very well tollerated, for 3 months and my numbers are coming down, but do not have the side effects I had before, except the ED. I will be on this therapy for some time and will report anything significant. Please feel free to ask me anything, as i am more than willing to share anything, as I am looking to ask many questions myself and am so grateful to have found this forum.
Posted 5/30/2023 9:25 PM (GMT 0)
Good luck to you and wishing you a very long durable remission! Will follow your progress!😊
Posted 5/31/2023 12:31 AM (GMT 0)
Welcome to HW and glad that you found the site and glad that you found orgovyx, as some others on the forum are also talking that medication. I have been on lupron and now eligard for ten years. The first five or six years I could handle the side effects, but the last three or four years it has taken a toll. Having those bad days was not easy for me or my family. Keep us posted on your progress.
Michael
Posted 5/31/2023 12:49 AM (GMT 0)
Oldarmyvet - I think a little more info would be helpful. How old are you? What is your recent PSA history? What scans have you had that showed cancer in the hip? Where are you going for treatment? VA? and so on. Just trying to understand your situation better. ED is a function of aging and prostate treatments so a messy situation exists. Most are not inclined to think about sex when on hormonal treatments so many factors are in play.
Posted 5/31/2023 6:48 PM (GMT 0)
I agree that more info should have been included.
I am in my late 80"s and have a much younger wife and have been married over 40 yerars.
My PSA has been as high as 14.2 and as low as 1.3. Right now is 2.4 with Gleason of 7. My T is less than 3.
Scans included PET/CT, MRI, DEXA, full body bone and hip and spine scans plus some others I can not remember.
Radiation was EBRT not EMRT (typo), performed by a Radiation Oncologist last year after my PC spread to my Illiac bone. My Oncologist and Urologist coordinate my care. I did not go the VA and have Medicare Complete Medical coverage by United Healthcare.
As mentioned before, Orgovyx has been working well for me plus has not caused my genitals to shrink or retreat back into my stomach like the eligard did. Right now it looks like I do not have the hormonal resistance issue, but if it does, they assured me of other treatments that could constrain the PC. We will see.
I hope this sheds more light on my condition and apologize for not including this earlier.
Posted 5/31/2023 9:11 PM (GMT 0)
Welcome, oldarmyvet24, and I hope that collectively we will be able to answer questions you may post here on the forum.

It's obvious from what you have posted so far about yourself that you are already pretty knowledgable about prostate cancer treatments and your own situation in particular. Good for you.

But out of curiosity, I have a question about the username that you have chosen to use for yourself: oldarmyvet24.

So were you a career army man? Or more of a short-termer? There are a few of us here who are vets, including also a few Vietnam veterans, like me (army).

For some of us that may be relevant to why we are here. I know in my own case, for example, that I had an Agent Orange exposure at one point while in Nam, whether or not that had anything to do with the prostate cancer I got years later.

And if you think there may be something like that in your own army service, something from the past, that may have been causative of PCa in you in later years, that's a fair topic to bring up here on this forum for discussion, as some of us have done in the past.

In any case, welcome, and I hope we are able to provide you with assistance in some ways.
Posted 5/31/2023 10:19 PM (GMT 0)
Hi Guy, I was drafted in 1956 just as the war in Korea was over, but was stationed in the States for 6 years. Thanks for the info and awareness on the issue. Nam was a horror and after my discharge, I joined a local National Guard unit and we regularly went to JFK in NY when you guys were coming home to put down the protesters, we had another name for them but I will not say it here!
Posted 6/1/2023 12:44 AM (GMT 0)
OAV - thanks for additional info. In some ways, you are like my 95 father who we could call OldNavyVet, last of the WW II veterans. He wears a WWII Vet hat around and always likes the attention he gets. My son was in Iraq and he got all sorts of attention as well that he did not particularly care for. Korean and especially the Viet Nam vets got really screwed by the public and it is still a mess. (I was in college when Viet Nam ended in 1973)

My Dad has a much younger wife, had brachytherapy about 20 years, recurrence about 7 years ago which was treated with Lupron for 2 years to undetectable and then he was 90 so that was the end of that and he stopped watching his PSA. By mistake, a PSA was run a year ago and it was 9.0 which is the least of his problems now but not causing any known problems.

There are a lot of meds available but only you will be able to weigh the side effect issues vs. quality of life as you get keep getting older. Doctors should be sympathetic to your wishes and change meds as needed to minimize side effects if possible.

The reason I asked about scans is that there is a newer PSMA PET/CT scan that does a much better job of locating PCa in the body at lower PSA levels that I hope you have had. Determining the extent of spread guides the treatments so these scans are becoming very common now.
Posted 6/1/2023 12:53 AM (GMT 0)
Oldarmyvet, welcome. I finished 18 months of Orgovyx a couple of months ago. While using Orgovyx the SEs remained the same throughout. Some weight gain, no Libido, a little tired in the afternoon, but other times energy was normal. During the treatment my PSA was undetectable and towards the end of the treatment my T level was Zero. I had no brain fog or muscle pain. All of the SEs are now slowly improving. PSA is still down and T level is rising. I am hopeful that your experience with Orgovyx will be successful.
My best to you,
jack
Posted 6/3/2023 5:40 PM (GMT 0)
We're certainly here to support you ~ we're a "band of brothers" with a loyal group of "support sisters" here, as well.

Always know this is a place to "check in" on days when those "gray clouds" gather and you just need to connect to some fellow "battle brothers" here.

Overall, it sounds like you have been faring well lately, and I am thankful to hear it.

There's no substitute for keeping active ~ both mentally and physically.

Stay focused on the goals and promise of tomorrow ~ and staying connected to friends and family.

We all walk alongside each other here ~ fellow compadres & compatriots.

Check in here often ~ let us know how you're faring ~ and we'll leave the front porch light on for your next visit!

In fellowship ~
CYCLONE ~ # Iowa State University
Posted 6/3/2023 9:53 PM (GMT 0)
Jack64, Thanks for your post. Having been on Orgovyx for 18 months, I want to ask about a SE of itching that I am having. It started after being on the drug for 2 months (just finishing 3 months now), I developed an itch in 2 areas on my body (silver dollar size) plus some small spots on my face and neck that were hardly noticeable. My dermatologist gave me a cream to rub on and they are practically gone now. Have you had any reactions that were similar?
I am just starting to feel some tiredness in the afternoon, but otherwise nothing really negative. I have lost a little weight (about 3 lbs) but was not overweight to begin with. I have always been somewhat of an exercise nut since I turned 40, work out with weights 3 days a week and use a treadmill or stationary bike 6 days a week and now, more than ever, am determined to keep it up.
My best to you too.
Posted 6/3/2023 9:56 PM (GMT 0)
Cyclone, Thanks for all your words of encouragement.
Best to you,
Olderguy24
Posted 6/4/2023 7:02 AM (GMT 0)
Oldarmyvet, no I didn’t experience any itching. Overall, the treatment went very well. It really didn’t affect my normal routine. It was easy to remember the one pill a day. Keep up the exercise, watch the spicy foods and stay cool. My best to you.
Jack
On a side note we are leaving on a ten day trip to Florida, I guess I won’t be staying cool. LOL.
To all, I wish a great start to Summer and stay positive.
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