Has anyone gone off hormone therapy (ADT) after radiation?

Posted by gkgdawg @gkgdawg, 6 days ago

My husband has completed 5 weeks of radiation and 4 months of hormone therapy, 3.5 months ADT. His PSA is less than .2 The doctor seems pleased with the PSA and is hoping that it will soon be undetectable. If he gets to that point, can he take a break from hormone therapy and ADT. He gets his next hormone shot in October. I am hoping he will get Orgovyx , instead of the Elegard. I hate that the hormone therapy has impacted his muscle and bone density. He looks smaller to me. He is trying to do weights and he is signed up for a weight room next month, when we return home from our summer holiday. I would appreciate any input

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for jimgaudette @jimgaudette

After three years on ADT, I have been off for eleven months. There has been no improvement in the side effects (which are many and awful) My testosterone is now up to 100 (from < 4) and I am hopeful that the side effects will decrease as the testosterone improves. I am 74 years old, walk 3-5 miles per day and do intense yoga and weights three days a week. In addition to calcium with D3, I take Alendronate for my bones. Luckily, my PSA has remained “undetectable”.

Jump to this post

Jim, which ADT did you take? I’m in my ninth month of Orgovyx and the side effects are severe. I’m also 74, and my team wants me to be on ADT two years. Aarrgghhh!

REPLY
Profile picture for jime51 @jime51

Jim, which ADT did you take? I’m in my ninth month of Orgovyx and the side effects are severe. I’m also 74, and my team wants me to be on ADT two years. Aarrgghhh!

Jump to this post

I was on Lupron for three years, Enzalutimide one year and Abiraterone for two years. I switched from Enzalutimide to Abiraterone when they changed my cost of Enzalutimide from $0 to $1,600 per month. The Abiraterone cost me $2.50 a month. I don’t understand the pricing, but I’m sure you understand my choice.

REPLY

I guess you could say I went off ADT. I was given a total of 3 shots before radiation and nothing after. My current PSA is .10. I really don’t know how I’d handle ongoing treatments, as the 3 have done more than enough to me. Received 2 Eligard, 1 Firmagon and the was 3 years ago and I’m still paying the price. My testosterone is still in the basement, I have definite bone loss, muscle loss and who knows what else. No libido and a shrinking penis. And I’ve developed a few other conditions that may or may not be related. It truly sucks and the worst part is not being told. All I’ve found out is after the fact. I wish all of us the best. Stay strong Brothers.

REPLY

There is quite a bit of discussion about so-called intermittent ADT.
You might google the subject "intermittent ADT"searching it thru AI on Google

Your husband might also wish to consider joining this clinical trial headed by Dr Ravi Madan SENIOR Clinician at NIH/NCI. I'm in it and it's still recruiting.
It's at the NIH in Bethesda, MD but they cover transportation costs. Your husband's doctor would still be the lead dog on the sled and would get all the test and imaging results if he wishes, as would your husband.

Here's the info

Prospective Monitoring of Subjects With Biochemically Recurrent Prostate Cancer Using 18FDCFPyL

ClinicalTrials.gov ID NCT05588128

Sponsor National Cancer Institute (NCI)

Information provided by National Institutes of Health Clinical Center (CC) (National Cancer Institute

Google this for his recent update
Asco 2025: Prospective Monitoring of PSMA–positive Biochemically Recurrent Prostate Cancer: Preliminary Data from 6-Month PSMA Follow-Up

REPLY

Hi, just finished SBRT about 6 weeks ago while doing ADT since February. I was 4+3 and cancer was pretty aggressive. My radiation was 5 sessions for the prostate and 3 for the hip bone. My PSA just prior to radiation was 0.19 and as of yesterday it was undetectable.
I've been on white button mushrooms for the past month and a half after reading clinical trial results from multiple places. I believe it helped to reduce my PSA and it looks like I'll be doing this maybe forever as long as my PSA remains where it is. I'm also taking CBD oil as there have been studies that it has a good effect on prostate cancer.
Good luck all. Dave

Here is information I gathered:
http://www.researchgate.net/publication/276923472_A_phase_I_trial_of_mushroom_powder_in_patients_with_biochemically_recurrent_prostate_cancer_Roles_of_cytokines_and_myeloid-derived_suppressor_cells_for_Agaricus_bisporus_-induced_prostate-specific_ant
https://www.emjreviews.com/en-us/amj/oncology/news/white-button-mushrooms-found-to-halt-cancer-progression/
https://www.researchgate.net/publication/384813429_Reduction_of_myeloid-derived_suppressor_cells_in_prostate_cancer_murine_models_and_patients_following_white_button_mushroom_treatment
https://www.healio.com/news/hematology-oncology/20250121/mushroom-supplement-may-slow-prostate-cancer-progression

REPLY

I did 3 mos of Lupron and then 3 mos of Orgovyx. Lupron made me anemic and if I lifted or moved anything heavy I would be huffing and puffing and have to sit down for a few minutes to recover. I switched to Orgovyx for 3 months and my anemia corrected back in into the lower normal area but my LDL rose. I have been off of Lupron for 4.5 mos and Orgovyx for 7 weeks and am feeling better every week. First post radiation and ADT blood work on the 17th of the month. Anemia going away was a big help. I hope something I've said helps.

REPLY

Thank you, yes, it helps, for sure.

REPLY

I had my last Lupron shot in April and thought it only lasted 3 months, I still have most of the side effects. If I knew this , I would have said no to the second Lupron shot since my PSA after surgery and 6 weeks of radiation was -.02

REPLY

My partner quit ADT, Orgovyx, after 9 months of the 2 years the docs wanted him to do. He felt like it was too risky to be on it longer than that, health wise. He was already getting heart palpitations and of course all the other terrible side effects. He stopped in January, and so far his PSA has remained steady. Background: He's stage 3, initial PSA of 92, heavy tumor burden, and he did 40 sessions of VMAT radiation.

REPLY

I finished my radiation therapy in January. Also a shot of firmagon in January, again in February but got lupron for maintenance to cover 6 months. Next appointment was in August and my doctor agreed to my getting Orgovyx. I'll see him at 6 weeks for check-in. Hot flashes each day but beats the heck out of the painful shots or going in for rhe shot. Understand it's been an insurance thing for some people so guess I'm lucky, I'm on Martins Point (TRICARE for military retirees) and Medicare. Best wishes to your husband.

REPLY
Please sign in or register to post a reply.