ADT/ ORGOVYX Day 45; Told Radiation Is Next

It sounds like you need a better radiation oncologist. I respect that they're busy, but you have a right to information, since it's your life.

I'm also on ADT "forever" (initially Firmagon, now Orgovyx), together with an ARSI (Erleada). After a couple of years, they did get easier to tolerate for me — part of that was the side-effects getting milder, and part was me getting used to them and recovering enough from the spinal metastasis to get active again.

I hope you see a similar improvement, though I understand you're dealing with a different set of complications. As I mentioned in another thread, our cancers are coach-built, not mass-produced — every one is different, so what you hear from the rest of us is just a range of possibilities to keep in mind.

Good luck.

I'll add that my Cancer Centre (in Canada) has a patient-support line that I can call any time during working hours to talk to a trained oncology nurse, who answers many questions and can also pass them on to my oncologist and get back to me if needed.

If your facility has something similar, I strongly suggest taking advantage of it. I had a lot of good doctors during my 3 1/2 months in hospital, but I also learned that nurses tend to be better listeners

For prostate cancer, the Prostate Cancer Foundation pcf.org has free Patient Guides as downloads or in hard copy.
Many, including me, recommend the book Surviving Prostate Cancer by Patrick Walsh MD for information about Prostate Cancer and treatments. I understand that there also is a Kindle download for the book.
Clearly you have had and have a number of significant medical issues, and hopefully these resources will give you some helpful information.
It sounds as if you need a quick orientation to Prostate Cancer and these resources should help.
There are a number of primary treatments for Prostate Cancer and I hope that you can acquire information to help you make treatment decisions.
Best wishes.

Hey Paul, You have been thru the proverbial wringer - but you gotta be a tough SOB to keep on going so keep on it!
I am only only Orgovyx 10 days and so far have had no side effects but I KNOW they are coming.
Every thing I’ve read and been told by the many good people on this board say that you must increase your exercise level and that this is really the only thing that ameliorated the side effects. Of course, your bowels are a different story but perhaps even a bit more in the area of free weights - like 10 lbs is all you need - and maybe more aerobic exercise - even just walking faster could absolutely help.
Of course, this is easy for me to say right now….later on maybe a lot different but I am jaw-clenched determined to keep going until I can’t. Hang in, bud!!

All good advice. I'll add from my own experience (on ADT since 2021) that consistency seems far more important than intensity. It's better to walk every morning, even if you can manage only a few blocks some days, than it is to go for a 10K power hike and then be exausted for a week.

Likewise, as @heavyphil mentioned, don't worry about swinging heavy weights, but make sure you visit the bench at least 3–4 times/week.

On ADT, "no pain, no gain" is the wrong approach; your body's already working hard dealing with the cancer and treatment side-effects, so your goal is to support it, not punish it.

Thank you, Phil, for your input and encouragement!

I, too, did not have any side effects from ORGOVYX during the first 10 days; it was really the first 2 weeks and the knee pain came first. After that it was one thing after another, almost daily until I have now experienced all of it.
I hope that you have a much better experience than mine! Really!!

How many men are living with their prostate cancer and have only had ADT to eliminate all testosterone and nothing else!

How many are living with prostate cancer months or years later, having only had continuing and ongoing ADT forever and prostate radiation? ( and nothing else ) ?

I appreciate everyone here and to those who have an experience or advice to offer!
Thank You!
PAUL

Most days, walking is an effort from ORGOVYX related joint pain after only 45 days!
Having an aggressive type of Prostate cancer is bad enough.
But my prostate cancer gave me no symptoms or pain.
I had quality of life before taking ORGOVYX.

Yes, that's tough when it feels like you've made yourself worse off.

My prostate cancer compressed my spine and left me paraplegic for many months, so I never had to ask myself why I was putting myself through all the hassle of ADT — it was part of my path to getting my quality of life back.

@paul28 asked "How many are living with prostate cancer months or years later, having only had continuing and ongoing ADT forever and prostate radiation? ( and nothing else ) ?"

Emergency debulking surgery to the metastasis on my spine, radiation to my spine and prostate, and ADT and ARSI (Erleada) since 2021. No chemo yet. PSA remains undetectable on the ultrasensitive test (< 0.01). My medical team thinks my medium-term outlook is very positive, and I shouldn't rule out having a long term after all.

What is attributable to an undetectable PSA ?