Biochemical recurrence, On / Off treatment with Orgovyx only

@biggalew

The 11/2/21 of .05 is still less than .1 so that wasn't bad unless the others were less than the .05.

Here is an interesting article. I didn't see that they mention radiation in he article. Seems you would want radiation and ADT. How Low Does PSA Need to Go in Metastatic Prostate Cancer?
https://www.medscape.com/viewarticle/how-low-does-psa-need-go-metastatic-prostate-cancer-2026a1000rpa

@biggalew Have you found a doctor that will prescribe Orgovyx? It might be hard unless you are very old. If you have trouble just say you are exploring radiation and a urologist will prescribe it to arrest further development. It is definitely the best ADT drug. Everyone on it has some bone and muscle loss even when actively doing resistance exercises and taking supplements to minimize the losses. Over half have hot flashes and/or night sweats. A minority have breast tissue development. An alternative is Estradiol patches. That eliminates the bone loss, hot flashes, etc. but has over 50% breast development.

If you do not find a doctor that supports the unorthodox treatment you desire wait a few years. When the cancer goes metastatic it becomes an orthodox treatment, probably combining Orgovyx with an ARSI.

@biggalew If it were me with PSA at those levels and doubling in a year, I would definitely want to contact an oncologist or even a couple of really good ones. As to what they will recommend in your case, I will leave that to them.

@jim18
I know people in their 60s and early 70s that are on Orgovyx. I’m a little puzzled as to why you said it’s easier to get if you’re very old.

What does very old mean in years?

@jim18 My treatment plan consisted of 28 external radiations and ADT via Orgovyx for 2 years. I experienced no significant side effects from the radiations, but with Orgovyx, I was ruled out after 17 months due to many dangerous side effects that left me feeling like a physical wreck. I stopped Orgovyx on June 16th of this year and am slowly becoming the man I used to be again. I also hear that many people experience little to no side effects from Orgovyx, so those who are suitable are among the lucky ones, to which I clearly do not belong. Also not unimportant, testosterone seems to have risen well again; I have already had sex and an orgasm, albeit dry, but that is normal since the seminal vesicles were damaged by the radiation. No more ADT for me. My PSA was 14.2 before the treatment and a score of 9, so aggressive.

Sorry, but your plan is not realistic if you want any chance of success. Orgovyx will drastically lower your PSA, but it will not kill your cancer; it will only hold it at bay.
Holding it at bay is not a good thing because it can become castrate resistant and then Orgovyx and other forms of ADT no longer work.
You absolutely need salvage radiation both to the prostate bed and all of your pelvic lymph nodes. As others have said, you are past the threshold of .2 and you need to cover a much wider area, therefore, including the nodes.
I really don’t think there’s an oncologist out there who would prescribe medication only for your situation. Just my thoughts and in no way medical advice.
Phil

@heavyphil THANK YOU PHIL! Along with the kick in the ass from @jim18 (thanks) it opened my eyes on what I initially had planned on doing which is radiation treatment with 6 months of ADT.
I plan on starting the 1st of the year (no way around this) getting a PSA to see what the number is, then an MRI and blood work, after that the ADT until they start the radiation treatments.
FYI, I was looking at my final report after my robotic prostatectomy and in Specimens: it has right and left lymph pelvic lymph nodes, so apparently they were removed.
I got onboard for this support group for direction and I appreciate the help.
Let me ask one other question, on the urinary / bowel issues after radiation, do a lot of men have problems there?

@biggalew Some do to a greater or lesser extent. After 25 rounds at Sloan I had diarrhea for about 2 weeks; it left and never returned.
Zero symptoms in the bladder department.
Every session my team stressed the mantra: empty rectum, full bladder. They promised me no lasting SE’s if I followed their directive. So far, so good!🤞
The only other thing I’ll add is that you should start ADT NOW. Your PSA is elevated and you want to STOP it from getting higher and risking further spread. Once it gets past your nodes, it will become much, much harder to contain and treat…it’s that simple.
Maybe you have things going on in your life right now, which makes you want to wait for the new year – and believe me we’ve all been there! Nobody wants ADT and we try anything and everything to delay it for as long as possible.
But this is your very LIFE we are talking about here and nothing is more important than that. Best going forward,
Phil

@biggalew I had almost no issues. A little loose stool (but no diarrhea) during the treatment (helped with the empty bowels / full bladder requirement). No rectal spacer so that was same as salvage RT. The bladder requirement for salvage RT may be different than the primary treatment I had. I had a little urinary urgency for a few months (pills to suppress this) after treatment but no incontinence. Most have no problems except for the urethra being squeezed if primary treatment due to massive RT hit on prostate (usually resolved with Flowmax). The key is to go to a center with good equipment and image guidance. As long as the radiation goes to plan (these are developed to minimize the hit on rectum and bladder) there are usually no problems. It is important that they are on target.

@biggalew
My husband is finishing his salvage RT (only 3 more sessions planned) . He had everything radiated - nodes, prostate bed, pelvic floor plus nodes boost. He has zero SA 🧿. His machine was VMAT and he had golden fiduciary markers placed, no spacer (spacer is almost never done for salvage).

I made sure that he had good diet and was really hydrated . He was taking fiber (inulin plus Metamucil) every day and also probiotics, L-glutamine, slippery elm, and ate chicken home made soup every day. He had no trouble keeping rectum and colon empty and his bladder 95-100% full - this is very important. They told him that he is really among very few that they treated who had bowels truly empty and with no gas. His RO and the whole team were really glad that he had no SA considering that so much of the area was covered with RT and one of the nodes was mesorectal.
We hope that it will stay that way since some studies indicate that strong acute reaction is correlated with presence of later appearance of chronic side effects but only time will tell.🍀

Wishing you all the best and I agree with others, please start at least with ADT ASAP.