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@denis76
My BRCA2 mutation makes this cancer, very aggressive. When I was on Zytiga, I stopped taking one of the four pills daily to see if it would help reduce the brain fog. I get monthly PSA test so I did it in the middle. After 19 days on only three pills, my PSA went from .2 to 1. That’s an 800% increase in 19 days. I became castrate resistant six years ago, ADT no longer kept my PSA down. I am now taking Orgovyx and Nubeqa And it has kept my PSA undetectable for 25 months. I know if I stop the Nubeqa My PSA will start rising quickly. I still take ADT because not all of the cells are castrate resistant so it helps a little.
I did stop taking Orgovyx For eight months. After seven years on ADT, both i and my oncologist figured my testosterone would never come back. It started coming back pretty quickly, At seven months, it hit 50 and my oncologist wanted me to go back on Orgovyx. The Nubeqa Works to suppress testosterone, so my PSA stayed undetectable, But I know if I quit Nubeqa My PSA will start to rise very quickly. So I cannot stop it when my PSA is undetectable.
Yes, like ATM, BRCA2 doesn’t allow long-term remission Unless you are treated.
I was on Zytiga for 2 1/2 years and have been on Nubeqa For almost 3 years. Nubeqa Will fail eventually, and I will go on a PARP inhibitor after that.
ATM has different survival issues,
Some information from AI about ATM. Seems the treatments work better with ATM than with BRCA2.
The long-term survival for prostate cancer with an ATM mutation is complex; while ATM mutations (especially germline ones) are linked to higher risk of lethal prostate cancer, especially in younger men, they don't always mean worse outcomes than other mutations like BRCA2, showing better response to some drugs (taxanes) but worse to others (PARP inhibitors), with some studies showing no survival impact with standard therapies but potential for better responses to newer combinations, highlighting variability.
An ATM mutation signals a potentially more aggressive form of prostate cancer, especially if inherited and diagnosed young, but survival is highly dependent on the specific genetic context, tumor stage, and targeted treatments received, making broad survival rates misleading.
Replies to "@denis76 My BRCA2 mutation makes this cancer, very aggressive. When I was on Zytiga, I stopped..."
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@jeffmarc
You real fighter, Bro!
\\ I did stop taking Orgovyx For eight months.
At what point in time? I mean, before resistance?
And what was the PSA status over the next 8 months?
\\After 19 days on only three pills, my PSA went from .2 to 1. That’s an 800% increase in 19 days.
Let me correct you, Bro 500% 🙂 (1/0.2)x100%
mmm, nighmare speed. Honesty, I dont understand why, with low PSA there is a small number of cells, no?
\\I was on Zytiga for 2 1/2 years and have been on Nubeqa For almost 3 years. Nubeqa Will fail eventually, and I will go on a PARP inhibitor after that.
OMG, Erleada will protect me for only about 1-1.5 years 🙁 My doctor predicted that Erleada would work for at least 5 years and even with a resistance phase
Have you had prostate removal surgery?
How did the cancer start: stage, initial PSA, metastases?
Regarding genetics and aggressive cancer.
It's harder for younger people because our cells divide faster 🙁
Do you think the saying "Don't make it angry and give it some fuel instead of completely blocking it" applies to cancer? Maybe it really does transform into an ultra-aggressive form only because it's being "tormented." In other words, cancer's aggressiveness is proportional to the aggressive measures taken. What if you give it fuel in portions, as if calming it down? The metaphor is certainly silly and crude, but I think you understand what I mean. That's exactly what I saw in your story, am I wrong?
\\After seven years on ADT,
\\I was on Zytiga for 2 1/2 years and have been on Nubeqa For almost 3 years.
Have you been taking only ADT for 7 years? Without Zytiga?
Let me ask you,
How tall are you? What was your weight like at the beginning of your cancer, in the middle (after 8 years of illness), and now? Are you thin? Is your body fat low? Is your muscle tone high?
How far do you run? Long runs to the point of exhaustion? What kind of strength training, endurance training?
Do you get nervous often? Where do you live? In the city or in the countryside, in the fresh air? Damn, sorry, Bro, but do you have sex or not? Thanks so much for the answers!
Amazing story! I'm still in shock that you're fighting cancer so hard! You're special!