Intermittent Hormone Therapy (IHT): How is it working for you?

My initial PSA was 28, Gleason 9. I think that's why my doc wanted 3 full years on Lupron (after the 6 weeks of radiation).

There are so many variables, so there's no one answer as to how long a person should be on Lupron. Age, PSA, Gleason score, tolerance to ADT, results of scans, etc. etc.

Thank you for sharing your experience. I’m also on ORGOVYX and have another 10-1/2 months to go. The last time we checked, which was two months ago, my testosterone was still at 38 and my PSA was undetectable. I’m also on ZYTIGA. I had a one week vacation because the side effects from ZYTIGA were so bad and in only five days, I felt 300% better. I know I need ADT to keep cancer at bay, but man, I’m looking forward to getting off of it.

Happy to post publicly, I just didn't think of it for some reason...I guess in my brain this is already scattered all over the forums...

I never saw a Decipher Score, don't think one was done. Right before surgery my PSA was 13 and my Gleason score was 7 (4+3). My MRI showed nothing outside of the prostate.

09/02/21 Surgery
Post surgery lab showed "Perineural invasion, and Lymphovascular invasion Stage pT2c" the right pelvic lymph node was removed as well, that was completely negative.

Post surgery I saw these PSA results:
01/26/22 0.039 (Share's high fives with surgeon who tells me "we got it")
04/26/22 0.091 (Get's that "uh oh" look from the surgeon)

This caused a PSMA PET which was negative.
Started Radiation / ADT and had these results The last two columns are total and free testosterone.
08/17/22 0.014
11/28/22 < 0.006
02/07/23 < 0.006
06/09/23 < 0.006
09/09/23 < 0.006
11/30/23 < 0.006
03/07/24 < 0.006
06/03/24 < 0.006 3 0.8
08/23/24 < 0.006
11/09/24 < 0.006 82 2

Stopped ADT on June 1, 2024 and the doc is ready to go to 6 mos check ups now.

So... 4/26/22 is why I might be a little pessimistic 🙂

Well, my story, ADT twice, in Jan 17 in conjunction with triplet therapy and in April 24 when combined with SBRT.

As my history shows, spread has been to lymph nodes, no organs or bones.

Still, pretty aggressive - GS8, GG4, 18 months to BCR, PSADT and PSAV.

The first tine was Lupron. Original plan was 24 months in conjunction with chemotherapy and WPLN radiation. There was data in various clinical studies about the duration - 18, 24, 36...Kwon was ok with stopping at 18 given my response.

The 2nd time was Orgovyx. Again, data from clinical trials all over the map, 6, 12....my radiologist said in the tumor review boards the oncologists were all over the map as to how long and why.

My oncologist advocated for 24 months and add Xtandi. I pushed back since I was thinking g six months, no Xtandi.

We "settled" on 12 months Orgovyx, only add the Xtandi if PSA did not drop to undetectable in first three months (it diid), labs and consult every three months and decide at 12 whether to come off or continue.

We met at 12, I argued for stopping. My radiologist agreed knowing I would do labs and consults every three months and would be open to ADT and ARI for 24 months when it came back (and SBRT if possible). My oncologist gritted his teeth but was ok with it though I could tell he advocated for 24 months. At our follow up consults he puts that in his visit notes...!

Was I right, no way of telling. We can't run parallel "me's" to test my decision. We're nine months in and so far, good.

Do I fell better, yes, gone are the hot flashes, fatigue, muscle and joint stiffness, and genitalia shrinkage (never lost the libido, someday medical researchers are going to figure a solution for women, until then..)

Is there a difference in my level of physical activity, no, just feel better doing it (at the gym as I type). While on the Orgovyx I rode the Garmin Unbound with my sister, went skiing with friends in Colorado, wife and I took vacations to Oregon and Iceland..

So, is IADT a possibility, yes, Discuss with your medical team, have clear criteria for coming off treatment, actively monitor while off and clear criteria for going back on..

Kevin

This disease is a real head scratcher….My diagnosis was almost identical to yours: No Decipher test, Gleason 4+3(unfavorable), no spread with PET, extensive PNI - but NO lymphatic involvement.
I had surgery and it took a full 5 yrs for the PSA to hit .18…yours recurred much faster.
We both had salvage radiation and I’m on ADT for six months and you’re on for 24 months. Of course, time will tell if 6 mos is enough for me as they will do PSA every 3 mos….sure hope so!
But your rapid rise in PSA post surgery has to speak to the more aggressive variety as opposed to mine, which took 5 years. Too bad we did not have Decipher Scores - that might have solved the riddle.
But I do feel your longer course of ADT was a real life saver!

Hello,
I had my successful RALP performed on 10/25/22. Unfortunately, there was an undiscovered bladder wound resulting from the surgery which went undiscovered which was allowing urine to escape into my body cavity. By Thanksgiving Eve, my testicles had swollen into the size of small oranges, I couldn’t walk and was experiencing severe pain. I had developed a horrendous Urinary Tract Infection which landed me in the hospital for 10 days and 2 more corrective surgeries to try and eradicate all of the urinary related infection in my body. Back on a catheter for another month. Finally, my original bladder wound had healed and I could stop using the catheter and start my recovery in earnest.
I can’t directly speak to “Intermittent Hormonal Therapy” because I’ve never utilized it.
However, due to a case of HYPOGONADISM 13 years prior to my PC diagnosis and subsequent surgery, I utilized “TRT” to address my overall level of health and wellbeing.
There’s still a lot of controversy and misunderstanding about returning too or utilizing “TRT”
following a successful Prostatectomy.(when 100% of the detectable cancer is gone).

Regardless of my PC, my Total Testosterone measures between 20-90, well below the accepted minimum level of about 300 for men 65 years and older. When on my “TRT” I try to manage my “Total T” around the 750 level. That works the best for me. Less than that isn’t enough and more than that doesn’t make me feel any better or improve my overall level of health and wellbeing.
When it comes to managing a man’s level of TESTOSTERONE, it’s a very individual protocol. One needs to do whatever works best for him.
Continual testing on your PSA levels and your Total Testosterone levels coupled with how you feel and your overall health will continue to guide you on what’s working the best for you!
“THERE IS NO ONE BEST METHOD!”
I’ve done more research on this than most doctors because they themselves do not personally deal with PC and utilizing “TRT!” Of course, many of their patients do but they do not personally have to manage it for themselves.
Research, Research and do more Research and then decide whatever you think the best course of action is to take. It won’t take long to assess if you’re feeling better and whatever lab results you are getting to make any appropriate adjustments with if necessary.
Best wishes and good luck,
GODSPEED,
Phil