Can I Manage Testosterone w/ ORGOVYX and Skip Radiation?

As like others; I've been down this same road. Prostatectomy and 37 rounds of radiation treatments in 2015. I was "good" until around 2021 when the PSA began to rise. I started Orgovyx in January of this year and it is doing what it was intended to do ... including weight gain and hot flashes. I will begin a holiday from the Orgovyx in January 2025. The PSA is expected to rise but the unknown is: how soon and how quickly.

Regarding proton beam vs scatter radiation. I initially had a high interest in the proton beam. However, as the cancer had already spread outside of the prostate; proton beam therapy wasn't appropriate. If after surgery a few cancer cells remain ... at some point the PSA will begin to rise.

As another said ... "The best thing you can do is to get multiple opinions from very qualified Urologists, Radiation Oncologists and Medical Oncologists, preferably at Centers of Excellence."

@russ777 i did not drill down on the “transverse plane of the beam, not longitudinal”. I asked my radiation oncologist about the normal procedure for radiation that is used for cancer contained within the prostate and the associated margins. Her answer was presented for the layman that I am. She held up her fist to indicate a prostate and said that the normal procedure was to treat the entire prostate plus an area of healthy tissue outside of the prostate which is labeled as margins and is measured using mm. The smaller the margin number, the less exposure.

The margins are part of the mapping process and I believe the real time MRI margins are because the RO’s have a better view of the prostate, the cancer and the mm’s of margin, which can be defined and mapped more accurately. Throw in an automatic shutoff and it all makes sense. Would love to her another opinion but then again, that is my layman’s understanding.

You and I have connected on a few threats in this forum, and I’m always grateful for your comments. Like you, I am on Orgovyx and also Zytiga. My oncologist and my surgeon strongly recommended my being as active as possible, with exercise, resistance training, and diet management as the best tools to minimize side effects. So far it’s worked for me. I’ve learned to eat less and be satisfied most of the time by using the NOOM app. I gained 6 pounds initially and it took eight weeks to lose it. I purchased a used bowflex through Facebook marketplace and some inexpensive hand weights from Amazon. Northwestern Medicine has some amazing free resources available for cancer patients was a consultation with a personal trainer to develop a reasonable and sustainable plan for activity and exercise. It’s been quite helpful. I’ve noticed that when I’m more active, I have less hot flashes and the ones I have are barely noticeable.

Good luck to you on your journey!

I would get the prostate removed while all cancer contain in it . Safe bet . Keep active and side effects are manageable . God Bless.

My exercise isn't what I would like. I have claudication in my legs and it limits my walking, etc. I'll be 76 in August. The biggest annoyance for me is the hot flashes. And living in Arizona, I've noticed as the temperatures have increased towards Summer; the hot flashes are more troubling. Unfortunately, you limit your activity outside when it's 110 degrees. I have an Oncologist appointment/PSA test on July 9th.

I hate chlorine, so I'm not going to practice what I preach, but before my legs could weight-bear again, my physiotherapist told me about exercise classes in the water, some even including treadmills. That might let you work out more than you can if your legs have to hold your whole weight.

There are also aerobic exercises for people in wheelchairs that involve only upper-body work (I did a few when I was in a chair).

Best of luck. It's hard staying in shape when your body isn't working as it should.

Thanking everyone for your participation and input in this discussion.
I don't think I've got a lot figured out as yet but I did decide to begin the ORGOVYX today.
I will be taking the medication for 1 month and then be reassessed.
That gives me a month to decide what's next, radiation or something else.
I had insisted on having one more PSA test before beginning ORGOVYX; the results came back earlier today and not good.
The total increased from 10 to 15.9 while the free is low at 2.1.
To be honest - I am not feeling confident in any of this. I'm thinking that Prostate Cancer will be my ending. Maybe 2 years?
PAUL

Everyone's journey is different, Paul, but my PSA was 67 at first diagnosis and had already metastasized to my spine (stage 4b).

After spinal surgery, two rounds of SBRT radiation (spine and prostate), and nearly 3 years on ADT and Erleada, I'M STILL HERE! (Sorry for shouting 😉). There's been no progression, and my PSA remains undetectable (< 0.01).

It's normal to feel discouraged, but don't write yourself off quite yet. Modern PC treatments are pretty impressive, and you've barely scratched the surface so far.

That is encouraging!
I'm assuming that your ADT was/is ORGOVYX?
How is it to have no testosterone?
Side effects?

I appreciate your support and interest!
PAUL

I was on Firmagon for the first 2 1/2 years, then switched to Orgovyx a couple of months ago (it was approved by Health Canada only last fall, and is still very new here).

I have the regular side-effects from low/no testosterone, but they've very tolerable, and I'm living close to a normal life. Recovering from paraplegia seemed like a much-bigger deal than the ADT side-effects, to be honest — going from bed to wheelchair to walker to can to walking again over the first couple of years made me feel like I was getting better every week.

Specific side-effects: hot flushes (the biggie), reduced body hair (not on my scalp), slightly-lower energy levels, lower iron (but not anemic), mild gynecomastia (just wear a loose shirt), and reduced sexual function, and more challenging to maintain weight. I also had mood swings for the first year, but they don't happen any more.