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16 years, that's amazing, Jeff. I wish you good health! Thank you for sharing your experience. I'll definitely take it into account. Very valuable comments, I give you a standing ovation!
If I may, I'd like to ask a couple of questions.
Your cancer resistance hasn't increased. How so?
Do you stop taking your medications when your PSA level reaches zero? And as soon as it rises, do you restart your medications? Is this the mechanism that helps prevent cancer resistance?
Regarding BRCA2, I have the ATM mutation, and I read that people with it don't live longer than 7-9 years.
Am I correct in understanding that the mutation makes the cancer incurable? That it keeps coming back. If I understand correctly, the right strategy for fighting it is to switch treatments?
My oncologist told me that having the ATM gene has both positive and negative aspects, but I still don't understand what he meant.
Again thanks for your advices!
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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.