Lupron or Not at 76?

@brianjarvis
Thanks for the advice.

I did not know about the ArteraAI prostate test this so will ask for this.

"In your MRI and biopsy reports, is there any mention of cribriform pattern, extracapsular extension, seminal vesicle invasion, perineural invasion or intraductal carcinoma? (If not, that’s good.)"

I checked the MRI, PET scan and biopsy and none of these are mentioned at all.

I'm probably going to start the Lupron (or Orgovyx) and decide at the 1 year mark whether is is worth continuing.

Well, a GS 9 puts you in high risk, ergo, your treatment decisions may need to reflect that.

Of course, treatment decisions have to balance other clinical factors, age, health, aka, any existing -co-morbidities and personal preferences.

Systemic therapy in your case can run the gamut from 6-36 months. On the higher end of the risk scale, 24-36 generally.

So, what to do?

You could start with a decision that says:
Radiation - ok
Systemic therapy - ok, but...Orgovyx and say Nubeqa, let's do 24 months and at that point, look at the clinical data and decide whether to continue to 36 or discontinue and actively monitor.

You could also discuss de-intensification criteria with your medical team. There is some data pointing to "rapid responders," those whose PSA drops to "undetectable in the first six months or so, coming off treatment and actively monitoring. (EMBARK Clinical Trial) The difference in PFS and RPFS may be "smaller" than doing the full Monty but there's a tradeoff, depending on T recovery, you may trade a lesser PFS for a "better" life.

If you decide to do systemic therapy, yes, the side effects are well known. The question is, which ones will you experience and their severity?

Well, you won't know until you try. I never lost my libido (to my wife's dismay), the statistics say 80% of men do...nor did I experience depression.

There are "mitigating" strategies which you control:
Diet
Exercise
Managing Stress
Attitude.

As others have indicated in their posts, many go on with their lives while on systemic therapy. Nobody likes the side effects, hot flashes, fatigue, muscle and joint stiffness...but you can live with them.

If the hot flashes become too much to handle, make your medical team do something, they have ways and means to do so. Same for bone density, depression...

Will your T recover if, when you come off treatment? A lot depends on age, baseline T, which systemic therapy...again, you won't know until...

I've done triplet and doublet therapy. Both times we have done "less than" the NCCN guidelines. Those decision were based on the clinical data, rapid response, with actively monitoring after. My T recovered to 100+ in the first three months, 400+ around six months. While on treatment, nothing much changed in what I did, just how I felt doing it.

Kevin

@tbgb50 Unfortunately, there’s no way to know “whether it’s worth continuing” except by going off of it and seeing if the PSA immediately starts rising again. While on Lupron/Orgovyx your testosterone will be suppressed (with all that goes along with that), and your PSA will be suppressed as a result. (My medical oncologist compared hormone therapy to training wheels on a bicycle - at some point you have to take off the training wheels and see if you can ride without them.) A risky endeavor indeed, to take the training wheels off too early.

But, all of these decisions are personal calls based on the quality of life we each expect.

(In my case, I ramped up my resistance-training exercises, and as a result experienced minimal Eligard side-effects.)

A bit to unpackage.
In 2022, I had RP at 72, followed by salvage radiation treatment(SRT) w/ short term ADT at 73.
G 9 w/ EPE after surgical path and PSA persistent at 3 mos post-op at .19
Cost: Orgovyx was my ADT. Covered on my Part D at 25% coinsurance. If you are on Medicare Part D, your annual out of pocket should be limited to about $ 2000 per yr
ADT: My short term for G 9 was not consistent with any guidelines at the time, and it appears from reading that length of ADT is variable with different ROs and MOs.
I would consider a 2d opinion from a COE. I was treated at Johns Hopkins.
Results (so far): Undetectable quarterly PSAs at < .02 close to 3 yrs now.
Prognosis: PCa returning at some time; hopefully not for a while; wishfully never. Now 76.
Best wishes for successful treatment.

I’m 76 been on Lupron for 3 months. I have adapted pretty well to the typical side effects night sweats, achy joints hot flashes no energy short term memory loss. I am worried about bone loss & muscles.

I’m glad I got a second opinion as I was to stay on Lupron 18 months along with radiation.

My second opinion doc, suggested 6 months and 5 SBRT doses. This was after meeting with him once & another body scan etc. which showed all contained in the prostate.

The first docs thought it had moved to the ribs & this was a concern but I broke three ribs 10 years ago but I wasn’t aware they glow and can be a false positive in tests, which is what we’ve finally determined.

I do wish my first team gave me the pill option as I didn’t find out about it til after getting the 6 month Lupron shot.

All that said, i am so glad only 6 months. We will see outcome later but i have a whole new appreciation for the horrible side effects men on ADT deal with because its the question is the cure worse than the disease?
Quality of life is me now. Quantity of life, I’ve adjusted my want.

PS
I’ve been a life long weight lifter (not heavy) and weight lifting is critical. Plus it’s fun. And I mountain bike ride. I can’t hike or really walk right now because I caught a UTI they put me on Levofloxacin & I got Achilles tendinitis which I still have going on 6 months. This has been the hardest to deal with cause I can’t do anything normally which has taken a mental toll on me more than the cancer diagnosis or the Lupron.

@tbgb50 If Orgovyx is covered you should get approval since there is no Part D alternative. Full cost for Lupron Depot is about $10K per year (part B) and Orgovyx is about $25K per year. On Orgovyx you will hit the Part D cap. ARSIs (Nubeqa, Erleada, Xtandi) are $10K+ per month.

Someone mentioned ArteraAI test. For high risk it is not if ADT is effective but will adding abiraterone help. This drug is generic and a relatively cheap alternative to the ARSIs (max $200 per month vs. min $10K) with worse side effects. Not sure this adds anything to the decision. See link to their site for what is provided.
https://artera.ai/prostate-test-report

I just looked up Casodex and this is good advice including whether the urologist even mentions it.

@kujhawk1978 Many thanks for the detailed reply. As everyone knows this is nerve racking and I am a bit overwhelmed with uncertainties when making treatment decisions, not the least of which is making sure the doctors are giving you all you need to know.

The replies have given me at least 4-5 things no doctor has mentioned yet. For example, the oncologist only mentioned Lupron. My appointment with the urologist to discuss ADT is in couple of weeks so I'll see.

@tbgb50
When I became castrate resistant to ADT, my oncologist, added Casodex to my drugs. It kept my PSA at the same .2 for three months and then it started rising steadily, By 12 months, it hit 1 and continued to rise, didn’t work very well. I then went on Zytiga but even it did not stop my PSA from rising until 9 months later when it finally hit 2.2 and started dropping. A year and a half later I went on Darolutamide And my PSA has been undetectable for the last 33 months.

So in my case, low testosterone was not enough, I was resistant to that. I needed a blocker like a lutamide, But a first generation lutamide Like Casodex (Biclutamide) was not adequate.

I do know a guy who spent five years going on and off Casodex, Every time his PSA would start rising, he would go on it, When it dropped to undetectable, he would go off and then wait until it went back up again. Not what you call a successful long-term strategy. He moved on to a lutamide When Casodex would no longer work.