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.

I'm a Gleason 8 also with Cribriform 4 but PSMA PET scan on top of MRI revealed no metastases. So that's different from yours and I'm fortunate. My treatment is 6 mos of Orgovyx plus Abiraterone with ablative radiation just about midpoint to destroy the offending gland. Assuming all goes well and I continue to demonstrate no signals of escape, I should be good to go.

I certainly relate to your concern and what I read here as well as elsewhere seems to indicate ongoing ADT. So I would explore this topic with your doctor and not hesitate to get a second opinion! The good doctors always welcome second opinions especially if they come from a known and respected source. Usually just your medical records and permission are all that's needed.

The other comments here about the side effects resonate (!) frickin hot flashes, intermittent mental fog, fatigue. What a trip.

I'd be interested to know how your drug regimen goes. I'm very similar to your PC description, except I also have a bone lesion on a rib. I'd LOVE to get off my ADT in six months, as it makes me nauseous.

Good luck!

If you have a bone lesion that means your cancer has already spread outside the prostate and it’s probably in your bloodstream. That means it can pop up anywhere. You really should be on ADT For a lot longer than six months if you’ve already had spread. This is something you really need to discuss with your doctor and your Gleason score is very important when it comes Deciding how long you should be on ADT.

They have pills for nausea. When I was put on a PARP Inhibitor they also included pills for nausea because it was a common issue. Speak to your doctor about this they can probably come up with a solution.

My husband was a Gleason 4 +3. But with the metastases, I am not sure if that matters, does it? The metastases probably trump the 4 +3. Because it metastasised, does that mean it is in the blood stream? I will see what I can find out about a Genito Urinary Oncologist.

Thank you for all your time and information.

Thank you for your comments. I am not sure how easy it is to shop doctors in our medical care system. But I will see what I can find out.

He is fortunate, no brain fog, but definitely fatigue

Thank you!
A little more background on my situation. I have been treated at UCLA Medical Center and am seeing a Genito Urinary oncologist there. I have also gotten a second opinion from a Genito Urinary oncologist at MD Anderson. Both docs well known and highly respected for their positive outcomes.
I think that their suggestion (both of them) that I might be best served by a holiday after 6 months of ADT is a real balancing act. I am meeting with them both in two weeks to really dive into my options and whether I might opt for this holiday. Testosterone deprivation is not a benign treatment and I think that more and more specialists realize that ADT can most certainly shorten life-expectancy in itself, and most definitely have a real negative effect on quality of life. I suffer from major brain fog, fatigue, irritability, anemia, significant joint pain, low white blood cell count, hot flashes that interfere with my ability to get quality sleep and a resting heart rate that has risen significantly. And yes, I ride my Peloton 3-4 times a week and do resistance training 2-3 times a week. I can’t imagine how I would be feeling if I did not do this.
Obviously, I consider all of these side effects better than dying from próstatas cancer, but I do think that forward thinking oncologists are now thinking that “holidays” from ADT, rather than just putting men on this toxic protocol for years and years on end, might be a more beneficial approach overall.
I am not sure how I will proceed but at least they are giving me this option. More specifically the option of taking a holiday and then monitoring my PSA closely to see if it rises above 0.1 and then possibly reapplying ADT or some form of radiation (based on PET Scan). I was hoping that someone else in this group had taken this path, but at this point I have not seen that response. Soooo, if I decide to take this ADT holiday, I will certainly let you all know how it goes. Good luck to you and keep fighting the good fight.

Yes, the fact that he started off with metastasis makes the 4+3 just a side issue. I do those conventions usually they want to put something on ADT and an ARSI

Going to a center of excellence can get you a GU oncologist. Mayo Clinic is a great place to go if there is one anywhere near you.

If you need help finding a place Post a message with the state you are in.