New to the Forum. Looking for some positive..

Thanks, Todd. I’ve heard a lot about your story. You’re an inspiration, man.

Got a baseline blood test for the purpose of tracking my liver numbers while on Zytiga. Noticed my PSA was down from 5.31 (December 2023) to 4.90 (February 2024) Could this be from the month on Eligard or just some random drop for no reason? Hoping the former.

From what I understand, monthly for PSA and testosterone. It might be three months. Right now I’m every two weeks for Zytiga’s possible impact on the liver.

There's a lot of variation regarding the effects of ADT on people. Some have reported mild symptoms; others are seriously affected.
I do think that you will be feeling something resembling hot flashes in the not too distant future.

It seems like it's a minority of guys here on the forum that don't get hot flashes--probably still too early to put yourself into that camp, but it would be a nice little "W" if you did get to miss out. I think the key to knowing how well your ADT is working is when you get your first testosterone check and the number is basically undetectable. (I seem to recall they call it "castrate level.") Your PSA should also be significantly down at that point.

I remember I was amused when my first few hot flashes happened. But boy did they get old fast.

Sounds like a good plan. I assume they are proposing HDR brachytherapy, high dose temporary placement of radiation source, follow by beam treatment to the surrounding area. This is the “triple play” treatment that others have talked about. I would not hesitate to consider this with a G9 plus lymph node diagnosis. It may take a few days in the city but the long duration RT would be closet to home.

Yes sir it’s HDR brachy followed by beam treatment. Got today’s PSA results. Down to 0.9 so that made me happy.

External beam treatment will be at the Westchester facility, so it’s not too bad of a drive. 30 min from my house vs 10 min locally.

Just signing in to post an update. This forum and the people who contribute were very helpful to me in the beginning of my journey. I’d like to thank all who provided support along the way.

I’ll get the radiation part outta the way first. HDR Brachytherapy performed in June at MSK in Manhattan. Some uncomfortable SEs but they were short lived. This was followed by 25 sessions of IMRT performed at their Westchester NY facility. Some minor urinary issues post treatment that mostly dissipated two to three weeks after treatment. In all, radiation went very well and was only a minor inconvenience.

I’m at month eight of hormone therapy (Eligard and Abiraterone). At the six month mark, I switched Eligard out for Orgovyx for faster testosterone recovery at the back end of all of this. I’ve been able to avoid some of the SEs (hot flushes, weight gain, fatigue). Some I’ve not been able to avoid (muscle loss, memory issues, depression, anxiety, mood swings, paranoia). The ones that have impacted my mental state have been heavy. I started seeing a therapist locally and a psychiatrist from MSK. I just started taking Lexapro to mitigate the impact of ADT’s destruction of my mental state.

In terms of ED related side effects, nothing majorly impactful as of yet. I’ve been able to manage with just the 5mg Tadalafil most of the time so far. As a precaution I started seeing Dr Mullhall at MSK. He pulls no punches and sets realistic expectations. He did prescribe the Trimix injections for the “exercise” required for post treatment function. I’ll admit, it was quite intimidating at first, but it ended up not being a big deal. And even the minimal dose is working like a charm. What I found interesting (and scary) from Dr Mullhall is that post ADT I’ll likely have to use Trimix full time.

The original plan was for 24 months of hormone therapy. I spoke to my MO about 18 months instead. He thought it was a reasonable approach considering I also had brachy added to the mix.

My latest PSA (taken back in early August) was 0.03.

Thanks for reading. That’s my story so far.

JPS, sounds like you are on track, especially with that great PSA. Congratulations for being well on your way to what hopefully will be a long disease free period