Stopping Nubeqa and Orgovyx after 6 months

You are a Gleason eight no other Gleason numbers matter, it’s the highest one the doctors use for further treatment. That is a very aggressive Gleason score.

According to the NCCN a Gleason eight patient should be on ADT for 18 months. Now some doctors will allow you to get off of it if you are undetectable for a certain amount of time (9 month To a year usually). But that’s for people that have not had spread outside the prostate. You are not in that situation.

I think you should be more worried about progression free survival. Your cancer has already spread beyond the prostate. That means it’s in your bloodstream and could come back anywhere. Do you really want to give it a chance to come back soon, after you’ve already had it spread? Prostate cancer can go dormant, That’s why some people haven’t come back after 20 or 30 years, And others six months to a year. I was only a Gleason 4+3, I had surgery and was fine for 3 1/2 years before my PSA started rising, I didn’t have to take any ADT because they figured surgery fixed it back in 2010, and my PSA didn’t rise for so long. It was also isolated to the prostate, But it still came back then and three other times since when my PSA started rising.

I’ve been on ADT for nine years, Yes, it’s not a lot of fun, I have to go to the track twice a day every day and jog/walk about a mile each time. I have to go to the gym three times a week to keep my muscle From deteriorating further and to keep my bones stronger. I have to take bone strengtheners, something a bone doctor said in a recent conference, all people on ADT should do. I took Fosamax pills weekly For seven years and I’m now on Zometa infusions. Actually, I’m 77 so all that exercising keeps me healthy, which is extremely helpful for prostate cancer.

Have you been working with a Genito Urinary Oncologist? They are the ones that specialize in prostate cancer and keep up with all the latest technology. If you’re working with a medical oncologist, they treat all different types of cancer so they can’t specialize in one kind. As a result, they don’t keep up with all the guidelines and treatments.

With six months of ADT those metastasis you saw are probably going to come back. They can’t be seen on a PSMA Pet scan if they are smaller than 2.5 mm and in some cases doctors UCSF say that even at 5 mm they’re hard to see. Is it really worth taking a chance when your overall survival could be greatly diminished?.

With my stage 4 cancer (one spinal metastasis, treated with debulking surgery and SBRT), the expectation is that I'll be on ADT + ARSI forever, or at least until there's a major medical breakthrough. As @jeffmarc wrote, once the cancer has left the prostate there's no such thing as a cure, only long-term disease management, unfortunately.

Next month I will have been on ADT + ARSI for four years. The side-effects became easier over time for me, but as I type this, I am sitting in front of a fan in the middle of a major hot flush after overexertion (they've gotten much rarer, but they can still happen). Still, the amazing thing is that I'm not only alive after four years but have no evidence of disease progression, something that would have been less likely 10 years ago with a stage 4 prostate cancer diagnosis.

I’ve mentioned multiple times that I walk on the track across the street twice every day. I walk at least a mile each time and I go as fast as I can somewhere between a jog and a run. Every time, when I come home, I sweat profusely. My hair gets all wet. I have to have a fan blowing on me twice a day just for that. And where I live, the temperature almost never gets even to 70.

After having been able to run for the last three or four months, my stamina has reached a point where I can jog/run on the track the whole time And I don’t get winded. I sure get sweaty though.

I think this is just one of the things many of us have to face with prostate cancer.