Posted 5/24/2023 1:59 PM (GMT -8)
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