ADT Hormone Treatments: Our Collective Experiences

I'll begin by saying that my testosterone making "Apparatus" is dead for lack of a better term. Years of severe pain and high opioid medication has shutdown my "Axis"
Therefore I've been on TRT for Many years.
My PCA diagnosis put an end to my primary doctor prescribing it.
I didn't do well at all. My main symptoms are depression, irritable mood and feeling life is not worth living. My T level dropped to 25
I started on AS as my 6 core's were G6 but second biopsy showed 8 G6 and one was upgraded to G7 at John's Hopkins.
In the end I choose SBRT and after 5 months my PSA was 2.2 I was usually a steady 5 or 6 so that's good.
However I have gone back to TRT and have been on it since 2021
I've tried to not be on it and my oncologist is of course opposed to it.
In the end it's my decision and I suppose if I somehow got worse I might consider going off. I doubt I'd need drugs because I basically don't make testosterone.
I'm aware of the risks but so far I'm doing okay six months post SBRT.
I admire those on ADT I just cannot face a life without TRT.

Glen

Has anyone else had experience with orchiectomy? I just finished SRT for a spot in my pelvis found by Pylarihy Scan when my post op PSA was .1 then doubled over 2 months. I chose Orgovyx for ADT since I was hopeful that ADT would be short lived - 2 month before SRT, 2 month during SRT, and 2 months after SRT and that the pelvic lesion was my only metastasis. My insurance copay was $250 monthly or Orgovyx until I reached the "catastrophic" drug level! I am waiting until July to see if my PSA is still undetectable off ADT. If not then another scan and more ADT/SRT.
The reason I asked about orchiectomy was the side effects of Orgovyx. I dealt with hot flashes and weight gain OK. Mental fog and profound weakness and shortness of breath with exercise were a problem. I don't know if this was the result of testosterone deficiency or some brain or muscle effect of the drug. I even had a stress test to rule out a cardiomyopathy from my previous lymphoma chemotherapy. 1 week after stopping Orgovyx I feel much better. Why not orchiectomy if you are looking at life long testosterone suppression?

Hello, All ~~~

After my initial diagnosis, with a PSA skyrocketing up over 100, I was started on ADT injections IMMEDIATELY.

As I shared in previous posts, my PSA began to literally TUMBLE downward --- it fell by 100 within the first month, which gave me newfound HOPE.

Soon thereafter, it tumbled down into decimals. That's the day my family and I had a celebration dinner at one of my favorite Midwestern barbecue restaurants ~~~ all hickory-smoked.

I kept teaching in my classroom, every day. I booked appointments after school, to avoid missing time with my students.

My doctor's biggest concern was my lungs. By the time I had been diagnosed, the prostate cancer had spread and infiltrated both of my lungs.

When I saw the scan, my doctor pointed to the white nodules "peppered" throughout both my lungs ~ a sign of metastatic spread. I was just in my 40s, and that was a very tough day.

There were so many lung nodules on the scan, I could not count them all. Furthermore, I didn't want to. The nodules almost looked like "buckshot" scattered throughout both my lungs. A lung surgery confirmed they were cancerous. Sigh ...

A few months went by, and my PSA levels went down to more promising levels, in the decimals.

My doctor finally announced, "It's time we take a look at your lungs again." He ordered a lung scan.

I was very quiet when he said he had the results, later that day. His voice seemed bright, and he said he had some good news to share.

He showed me the scans --- and where there had been multiple nodules scattered throughout both of my lungs, the scans showed grainy, gray, and cloudy areas where the white nodules had been a few months before.

My doctor announced, "These initial ADT injections have worked WONDERS for you. These scans are beyond all expectations."

He went on to explain that the gray & cloudy areas were lung tissue SCARS. At first, that sounded ominous and foreboding.

My doctor seemed jubilant for the first time, as he stated that those gray area on the scan showed that the ADT injections had "strangled and starved" the cancerous lung nodules in both lungs. He said, "I have NEVER been so thankful to see scars in my life, because this represents great improvement, due to the ADT injections."

I'm still here ~~~ and soon I will be stepping into my tenth year since diagnosis.

That night, I drove home --- with a quiet feeling of THANKFULNESS for the presence of lung scars ~~~ because they represented newfound HOPE.

Stay strong in the battle!

My best to each & all ~~~
CYCLONE ~ # Iowa State University

Hello, Boomer53 ~

I also had the 44 radiation treatment plan, plus one simulation treatment. So, I am sending you my support.

Check the top of your screen this weekend - I just booted a helpful thread about radiation treatments that many of us here wrote together. It was started by TempFlightRestriction.

Trust me when I say, you will find it helpful. My radiation treatments were very helpful to me.

Keep us posted on your treatments!

CYCLONE - # Iowa State University

Another strange benefit of ADT, prior to ADT I had tinnitus (ringing in the ears). During ADT and zero T it stopped. T at 37, it has started.

Thought I would chime in on my very limited experience of ADT.
44 PBRT completed May 14th. No real noticeable SE from that at this point. No urinary or bowel issues like many seem to have from traditional (photon) radiation.

I’ve been on ADT (Eligard and Zytiga) for over 15 weeks
I started Eligard injectons on 03/14 with one month of Casodex. Then Zytiga was added about 6 weeks ago. Everything I read about Zytiga is it's for advanced PCa typically with mets. In my case one LN was affected as well as SV. PSMA PET did not detect anything further. So I'm a little surprised (scared?) that this was prescribed already by my MO.

Here’s my recent numbers which are (mostly) very good at this point:
PSA <.02 undetectable
Testosterone 5
Libido 0

Hope this is not TMI (but not likely any kids in this group). But I think it’s the kind of info many would like to know but afraid to ask. Although I’ve had some semi-erections since RT and starting ADT, happy to report having one allowing PIV. Thankfully my wife had greater interest in checking this out than I did (thanks to the drugs). Not sure if I have the ability to climax after burning 🔥 up the prostate with RT but lacked the strength/stamina to get that far anyway (again, thanks to the drugs).

Baby steps. One step at a time. At least no longer wanting/needing to crash for the night at 7:00 or 8:00 pm. Back to my regular bedtime of 11:00 or 12:00 and up by 7:00.

ANYONE ELSE DEPRESSED?
Nearly as bad as the lack of strength, stamina, and libido is the depression. And toss in a big dose of apathy. I’ve never before had any serious issue with depression besides the “ups and downs” that life throws at ya. I'm in the stage of I don’t GAS about anything. And I sometimes get the feeling that I’m just tired of life. Of course my “life” right now seems to be going to doctor’s visits (for me & my wife). Not sure if this is SE of the ADT meds or just the fact of no testosterone. Anyone else relate to this?

my GP started me on venlafaxine ~ Rob

I like what I read about the positive affect, but I also read it can cause significant weight gain. THAT I don't need. The ADT already has cost me muscle mass but my weight is stable thanks the the belly-jelly roll developing. Did you experience that?

Post Edited (IsItSerious) : 6/29/2022 9:03:28 PM (GMT-6)