What a long, strange journey it’s been!

Between 10% and 15% of people that get prostate cancer do not have a PSA increase that goes along with it. It makes it very difficult to figure out what’s going on after treatment. Now we have the PSMA PET scan, however, and that can keep track of what’s happening.

I’ve heard a few people on the ancan.org Weekly online advanced prostate cancer meetings, With the same problem, you have, Over the last few years. You could come to one of the meetings and see what’s going on. If you get there real early 10 minutes before the meeting starts, you can usually be talked with First. They will discuss your case and give recommendations for treatment. They have been doing it for 17 years. There is a meeting tonight at 8 PM Eastern time. You must have GoTo Meeting installed to attend the meeting it’s free on every device. You put answercancer As the meeting name to join it. If you go to the website, you can watch previous meetings and see what’s happening. If you go to the website And sign up for the advanced prostate cancer meeting, you will get a weekly newsletter that is full of information about the latest treatments. You don’t have to go to the meeting, If you wanna stay anonymous, you don’t have to put your name down or have your picture shown.

Zytiga is very hard on the heart. It gave me high blood pressure and four afib Events in the 2 1/2 years I was on it. I am also on Nubeqa now and it works great.

Thanks, Jeff
I am going to try to join the meeting tonight
Thanks again!

What's the most probably cause of edema? Lupron or Zytiga+Prednisone? And are there ways to manage that, while continuing on medicines?

I have a "Life is Good" t-shirt with same wording. I get a lot of comments about it.

"What a long, strange journey it’s been!"

With many diseases it is a very long, changing, and strange journey.

@sbd
Zytiga (abiraterone) is the likely cause of the edema. The OP switched to Nubeqa (darolutamide) and their edema resolved.
"Zytiga + Prednisone:
Edema is listed as one of the most common adverse reactions (≥10%) with Zytiga plus prednisone — meaning it affects at least 1 in 10 patients. Zytiga blocks cortisol production from the adrenal glands, which can cause fluid buildup (edema)"
Caveat: I'm not a medical professional!

You are not alone. I met a man in my surgeon’s office and we were both post-op.
His PSA was 1.0 and long story short he was a Gleason 10.
No spread at that time but I will never know the aftermath.
Phil

Here's the latest meeting recording: https://ancan.org/category/recorded-groups/

My husband is "almost the same" a year ago he went to Dr with enlarged prostate and ED, Dr agreed and gave him meds but checked PSA just in case, called a few hours later it was almost 300!
Referral to a pelvic CT scan which showed it outside prostate too so stage 4, urologist next who wanted biopsy and Gleason was almost all 8 and 9s. Referral to oncology who did a psma scan and it was all over his body! Lungs, spine, pelvis, bones, lymph nodes and prostate.
He at first refused ADT! He'd rather die than lose his manhood.
He started on firmagon and was supposed to switch to lupron but he thought the side effects would be worse so stayed on firmagon.
Was supposed to start zytiga and Prednisone too but in the few months of waiting and tests he had taken lots of supplements and wrecked his liver (on paper) he felt fine and looked fine but blood work said otherwise. Once he quit everything he started zytiga etc. then over the summer did chemo docetaxel 6 rounds. Psma scan in the fall showed great improvement, still some spots but nothing like before.
Now he's had another scan since it's been 6 months since the last one and those stubborn spots are still there but shrunk....so at least not bad news
He "feels" fine. But is tired and weaker but goes to the gym every morning and does stuff around the house but seem to "crash" in the afternoon....
It sucks to get diagnosed with cancer let alone terminal cancer!

@jeffmarc yep your right as usual. You ve got it figured out in your situation. I m impressed how you stay fit at 78. Your advise is great for helping others . You will someday be a Saint in heaven for being so kind to those in Panic mode upon first discovery- YIKES - it’s Prostate cancer they say. HELP HELP. lol