Current ADT Recommendation

[Cyclingrealtor]

I made a post about taking a vacation several weeks ago. What I should have said is that I am considering stopping ADT at 18 months. Tall_Allen gave a fantastic explanation of the stop/start challenges and I have read through some of Allen's website but I am still not clear on the timeline for ADT.

Here's the quick timeline:

5/2021 - PSA 15.2 (first PSA test I ever had. I was 53)

9/2021 - RALP (PSA 16.3/ 4+3/ PNI/ EPE/ SVI/ T5 @ bladder neck/ 33 lymph nodes clear)

4/2022 - BCR

6/2022 - PSMA PET showed single deep right obturator lymph node

7 - 8/2022 - 33 rounds of EBRT and Lupron

7/2023 was my 3rd ADT shot so that will take me through 01/24 or 18 months. I have taken abiraterone for 6 months of 4/250 and my MO cut that back to 1/250 a day when I said that I wanted to consider stopping ADT. I did take a uPSA test in July and the treatment must be working as hoped as my PSA was < .006.

The challenge that I face is that my MO is retiring in Oct. 2023 and he just does not engage to have any meaningful discussions around the best timeline given my disease history. I appreciate all of the input from this group as it gives me things to consider when charting the best course of action. So does the current data show 12, 18, 24 or 36 months of Lupron and abiraterone?

I FXXXING hate ADT with a passion with the loss of muscle & strength, joint and muscle pain, fatigue, sadness and of course the loss of libido and the atrophy and mess that follows. I have a hot & amazing girlfriend who has been phenomenal through this journey with me. PCa started only six weeks into the relationship so we had maybe 4+ months of a fun and spontaneous sex life before surgery. And then just 8 months after surgery things went down hill again with a BCR that turned into EBRT and lupron and abiraterone. Needless to say the loss of the sex life as I knew it at 53 years old has been the hugest challenge emotionally besides having the PCa. I have shed numerous tears around this. I have some cialis and a pump to try to keep things alive but things are meager in that department.

In addition I am very concerned about the cardiovascular issues with ADT as I have family history with that, but I have never had any issues with my health until FXXXING PCa. I try to stay active and healthy the best I can with cycling and hiking.

Thanks again to all of you and your insight and feedback!

[Tall_Allen]

The current data show 2 years of abiraterone and 3 years of ADT for men with positive lymph nodes (stage N1):

ncbi.nlm.nih.gov/pmc/articl...

There is a current clinical trial to see if 2 years of Erleada+ADT or 2 years of ADT alone is better:

classic.clinicaltrials.gov/...

Anything less than that or vacations risks selecting for the most virulent, resistant strains of PCa.

[Murph256]

Currently, I’m going with quality of life over quantity of life. Like you, I hate ADT and it’s side effects with a passion. I’m currently enjoying my 2nd ADT vacation. The strategy may backfire down the road, but then, none of us are getting out of this alive anyway.

[KocoPr in reply to Murph256]

That takes guts! I was gonna say balls but you know,,,ADT.

What are you T and PSA number’s including your NADIR?

Never mind i read your bio, but what is your PSA now?

[Murph256 in reply to KocoPr]

.1 So with my doubling time I’ll likely go back on ADT in 10 months.

[OzzieJ]

I’m pretty much the same boat, aged 52. RALP was 4/22. Then had persistent PSA of 0.5 after and PSMA scan identified 2 pelvic lymph nodes. After that I had chemo, 35 sessions of radiotherapy and just coming up on 1 year ADT (Decapeptyl). Have been on apalutamide for the last six months.

My attitude is to push through the recommended 3 year regime as it offers the best chance to get this monkey off my back. I think I would find it more difficult if I stopped treatment early and then I got a recurrence which would mean permanent ADT. At least this way I know I’ve given it my best shot.

So it’s a personal choice and good luck with whatever you decide to do.

[Yzinger]

following

[Derf4223]

One of the biggest hazards of APCa for many of us is we have no primary disease symptoms, just treatment side effects. So its easy to think one can stop treatment.

Which brings me to our Hydra club. APCa is a Hydra that thrives on hopeful ignorance and generally severely punishes those who stray from treatment.

We are strapped to the mast of treatment. The Hydra sirens never give up. Stay the course.

[hopefull99]

Great that you maintain an excercise regimen

Both my cardiologist and oncologist recommend resistance based exercises in addition to aerobic

[RMontana]

Cyclingrealtor,

You may opt for intermittent ADT treatment...dont know if it will fit your disease profile. If so, check out this study that says that your TET (testosterone) level in the 1st year of ADT treatment, not duration of ADT, is also important to consider...

healthunlocked.com/active-s...

Understand what ADT has/ will do to your sexual function...if this is important consider an IPP (inflatable penile implant) at sometime...the longer you wait the more damage is done with ADT...its a great treatment and saves lives for sure, but it takes you to places you cant back out of, regarding sexual function...so, consider this as well...

healthunlocked.com/active-s...

healthunlocked.com/active-s...

Let us know how things turn out...Rick

[VHRguy]

With my original dx, G9 5+4 and locally advanced by MRI imaging, I decided that if I had evidence of biochemical recurrence I'd bite the bullet and do permanent ADT.

I'm not a gambler, and the brief respites from ADT as "holidays" just weren't worth the risk to me. The degree of recovery was uncertain during each holiday, and disease advancement was guaranteed since that's the cause of restarting the ADT each time.

So, since the ADT was to be permanent I chose surgery to remove the little rascals creating testosterone. Further, to offset the miserable side effects of no testosterone, I have also been on estradiol patches. This has been a complete success for over 4 years now. I feel great, and still have an undetectable PSA.

Apart from the loss of sex life (which is no trouble for me since my wife's post-menopausal anyway), and some breast growth, there have been no downsides.

This is a situation with no perfect outcomes. We all have to choose a path with various outcomes, and we hope to choose the path with the least troublesome outcomes for us.

[TN1932 in reply to VHRguy]

Would you mind sharing how you get Estradiol patches?

[VHRguy in reply to TN1932]

Ah, yes, this can be challenging. I found a local doctor who understood my desire and plan with my hormonal response to recurrent prostate cancer. This doctor has a large clientele of trans people, and while that's obviously not my situation he was open to working with me.

I've talked to other PCa patients whose doctors refuse to prescribe these patches. It's discouraging, but with some persistence people have been able to find a supportive doctor. They all seem to get twitchy due to the "cross sex" hormone concept.

But it's NOT. It is a method to offset known side effects of testosterone suppression. You can look up the results of the PATCH trial, showing general safety with these. Also, look up the work of Dr. Richard Wassersug, a notable proponent of the estradiol patches for PCa management.

[TN1932 in reply to VHRguy]

You're lucky. I'm looking for a supportive doctor in Orange county and Los Angeles county, CA.

[j-o-h-n]

Note to VHRguy,

FYI Dr. Richard Wassersug has been a member of H.U. since February 25, 2016.

Note to Cyclingrealtor

BTW You're preaching to the choir when you post that "I FUCKING hate ADT with a passion" (note: I hate upper case X's, they scare me).... Just keep a clown outfit handy and ready cause remember there's a tiny weeny circus car always gassed up, available and waiting.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/27/2023 4:05 PM DST