Still Undetectable 8 ½ years, 10 1/2 years out from DX of Stage 4

Just Be You
I asked a well-respected Advanced PC Healing Well poster and friend of mine for advice on asking my Oncologist for a “Zytiga Vacation”. Ya’ll must also know Todd Seals and about his journey that inspires us all. He has been through a lot ever since his initial diagnosis. Even got Provenge and early on, Zytiga. He got his extremely high PSA down to undetectable for about 7 years.

He then consulted with his Oncologist about taking a “Zytiga Vacation”. The Doctor gave him the green light and he took it. He told me that by being on the vacation, his Testosterone level rose, and was feeling his oats for a few months, and he got more energy. A few months later, he found after tests, the ol’ PSA rose very slightly, so he decided to go back on Zytiga, and his PSA went back down to undetectable, where it still remains a few years after his vacation.

Before my last Oncologist Visit, I called Todd for advice, and at the end of our conversation he summed it up by saying “just be you”, as in, do what you think best for yourself. When my lab results were all good, and PSA value was once again undetectable on 5-5-23, it maked 8 ½ years undetectable since I had started Zytiga (now on the generic A.A.) I asked my well-respected Oncologist Dr Tanya Dorff at City of Hope about a possible “Zytiga Vacation”, as I had been noticing more and more fatigue in the past few months. Seems I can only do 10 to 15 minutes of yardwork at a time without getting very tired.

She said since I was doing so extremely well on Zytiga(A.A), it might be a good time to go ahead and take a break. If the PSA rises, then I would go back on it. I said great, but I was worried about a future PSA rise. She suggested a mid-grade approach, cut my pills to 2-250 mg per day instead of 4-250 mg. I decided to “be me” and go for that approach. I have read of others that are doing that and it seems to work for them. So maybe even 2 pills early morning with a low- fat breakfast? Trying that for the past two weeks now. Finding I am still tired doing yardwork. Maybe I am just lazy! Lol.

In any case great advice from Todd, Thanks Brother! Be you, be your own advocate.
Keep the faith Brothers! Round of drinks for all on me!

Wings aka Dan in So Cal

Fantastic update, Dan. You can’t go wrong with Todd.
Michael

Always "cheering and rooting" for you, my compadre!

Sounds like you have a new & proactive plan. You and your medical team will work together to "keep tabs" on how it all goes.

I'm heading towards 8 years on ZYTIGA - now the generic version, ABIRATERONE ACETATE. One of these sweet days, there's going to be 100 empty ZYTIGA bottles lined up on my shelf.

I remember when I was excited when I had 3 empty bottles lined up on the shelf.

I see my oncologist every four weeks, like clockwork. For most of these past 10 years since diagnosis, my PSA was assessed every four weeks.

In recent months, my oncologist and I agreed to make a change - and I have PSA assessed every two months now.

I get a ZOLADEX (ADT) injection every four weeks. I'm currently thinking about asking if we can start stretching my appointment timing out a bit more --- to every five weeks instead of every four.

That represents a little feeling of "reprieve" in my appointment protocol. Time will tell. I'm going to discuss this possibility at my next appointment. It's the little things, you know!

Let us know how things go for you, Wings of Eagles.

Standing alongside you, every step of the way!

Handshake, camaraderie, fellowship ~
CYCLONE ~ # Iowa State University

Thanks for all the replies and encouragement. Cyclone, I have 102 bottles all lined up.Go Bucks, you are correct, Dr did not say with low fat breakfast. I jus threw that in to see what others say so I stand corrected, thanks Brother. Keep up your non zytiga treatment and be well my friend.
Wings ❤️