Posted 1/9/2021 1:07 PM (GMT -7)
You have received great insight from JNF. I agree ---- good to research, good to learn options, good to gain background --- but don't cross the bridge until you get to the river.
Your medical team will guide you. But --- you want to have some background knowledge, so you can ask informed and cogent questions. My doctor KNOWS I will ask questions, every time I see him.
I had two doctors who didn't have enough insight to lead the way. They are no longer on my team.
In metastatic cases, time is of the essence, and you need the best and the brightest.
My current doctors have my case memorized. They are outstanding --- and we have a bond ---- teamwork.
My thoughts are considered & valued with every approach we take ---- and my respect for them and their expertise is beyond words.
With a PSA of 800, you will likely need to get the battle started, as I did. I know diagnostics need to come first, of course.
Even though your testosterone is low, my oncologist worked to get mine lower to help control PSA flares. We tried other types of ADT shots, and my testosterone stays consistently below 7 now. Do all that you can to bring that PSA down.
Unfortunately, residual testosterone was creating spikes and flares in my PSA, and my oncologist worked to find ways to level it off. It's like trying to get a fire-breathing dragon to go into hibernation, by taking away his food source --- in this case, testosterone.
I have been on ADT for over 7 years. I did chemotherapy infusions, as soon as they were offered after new clinical studies, about 6 years ago. I have been on ZYTIGA for over 5 years. A few years ago, I also did 9 weeks of radiation, after Dr. Kwon at Mayo Clinic recommended it. Every one of these treatments has helped me maintain my health goals.
All of these treatments worked together, in tandem. Each step was carefully planned by my doctors. Each case is different, but that is my story.
It was a major milestone, just reaching my 50th birthday some years ago. I am still adding candles to each year's birthday cake.
I remain active, I continue working full-time, and I just got back from walking a few miles today at one of my favorite lakes on this winter's day. That's the hope I want to share with you today.
I am mindful of my blessings --- my family, friends, and faith --- and the wisdom and compassion of my doctors who continue to lead me forward in my healthcare. My PSA at Christmas time was listed as undetectable. Best Christmas present I could ever ask for!
Rely on your doctors --- form a team together--- make decisions once your tests and diagnostics are finished.
Meanwhile ---dust off those boxing gloves --- and get ready to enter that boxing ring. If warranted, pending test results, you will then be READY!
Keep pushing forward ---- give it everything you've got!
CYCLONE - # Iowa State University