Life after leuprolide

[Cyclingrealtor]

We all know that delaying ADT as long as possible should be a goal and benefit for early detection for men.

But with the US healthcare policy in place that is not the case for many of us here on HU as we have a late diagnosis with advanced or metastatic disease that puts on the fast track to BIG pharma drugs.

I am not looking for an opinion on my choice of treatment but for insight from those of you who have been able to have a curative outcome or many months or years of treatment-free survival.

Quick snapshot: self-discovered PCa with an online blood panel (15.2). Biopsy PSA 15.9 with low volume 1/19 @ 4+3 (90%) and 2 @ 3+3. No known family history or germline issues.

Surgical pathology PSA 16.2 G7 4+3, tertiary 5 at blader neck, right svi, pni, epe and 32 lymph node clear.

Eight months < .1 and then late April 2022 PSA .1 and within 9 weeks PSA of .4. PSMA pet = deep right obturator iliac lymph node (5mm/ .5cm). 33 rounds of EBRT and 24 months of leuprolide and 18 months of abiraterone. During these 24 months a PSA of < .1 and a uPSA < .006. My UC Davis / KP MO and I discussed the treatment plan, STAMPEDE trial and QOL and agreed that the difference between 24 months vs 36 months would most likely be negligible. At the end of June 2024 I stopped the abiraterone and leuprolide.

I know these results may last a few months to several years. But like many who aren't at the point of throwing in the towel, I'm trying to balance treatment and QOL hoping for many years of treatment-free survival.

I had varying degrees of the side effects: fatigue, brain fog, depression, muscle and penile atrophy, joint and muscle aches and pains, loss of strength, loss of libido, lack of concentration, lack of motivation/ drive, etc.

Since stopping the treatment I have two uPSA of < .006 and a T that has been < 3 and one that < 20.

What options have you taken that help with improving energy? Focus? I believe if I can get some of these back at a better level I will be able to achieve more progress.

[JohnInTheMiddle]

These are good questions CR. I will say a little hard to understand the whole situation. I am also wrestling with energy and clarity etc. I'm on Abiraterone/Zytiga ARPI + Firmagon/Degarelix ADT.

Most of the time I'm not doing too badly! Although I have fallen off the wagon on exercise and I'm only now getting back to it.

But for me living longer is the goal - my wife and I still have a teenager at home - and it would never cross my mind that therapy is the enemy. My understanding of this thing is that the PC beast is always there, lurking, and just waiting for us to let up on the pressure.

Aside from exercise, when I want to get a little more fancy I have been looking at low-dose estrogen add-back. So far have failed to actually do anything.

[Cebubob]

Very detailed description of disease, symptoms and treatments. My journey started in February of this year. Stage 4, PSA 84 now 0.28 from ADT Erleade and Lupron. Yes, brain fog, weight gain, weakness, melancholy, libido very low. I take off label supplements: Fenben, Sulphoraphane, Soursop, Moringa, genistein. I recently purchased RSO, plan to take every night as it is extremely strong. I think I get much relief from all symptoms with exercise. I walk two miles every day, use five pound hand weights while I walk until I can't raise my arms. Good lucK to us all.