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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!
Replies to "@jeffmarc You real fighter, Bro! \\ I did stop taking Orgovyx For eight months. At what..."
@denis76
Is this true Denis
“ suspect his testosterone is being measured in nmol/L, not ng/dl. So you would multiply ny 28.8 to convert. So 1.7 would be about 49”
If that is true, and that is what is happening, then I can see why the doctor wants to remove the testicles. He could try putting you on Zytiga instead of Erleada. It does reduce testosterone further than ADT, but that may not be enough. I’ve only heard of one or two other cases like this where the testosterone doesn’t get dropped to at least below 20.
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@denis76
Here’s a short history
In 2010 I was 62 and a biopsy showed Gleason 3+4 PSA 10.7, My father died of prostate cancer and he had radiation so I decided to have surgery. After surgery they told me it was a Gleason 4+3. It was only stage two. 3.5 Years later it came back, I had a Lupron shot 2 months before 8+ weeks of radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1.25 years later went on Zytiga, which kept my PSA down for 2 1/2 years. After some AFIB Issues I switched over to Nubeqa. The last 25 months I’ve been undetectable. I became stage four about six years ago, had a metastasis wrapped around the L4 on my spine zapped 2.5 years ago. I did not find out I was BRCA2 Until five years ago. That’s why it keeps coming back, I’ve had four reoccurrences.
For some reason, I was thinking going from .2 to 1 being a .8 increase was 800%. It did quadruple and that “seemed” like 800% not the true 500%
I stopped taking Orgovyx 10-15-24 and restarted 6-9-25. Stopped it 7 months after I switched from Lupron to Orgovyx.
BRCA 2 has this habit of becoming aggressive, So getting three years out of Nubeqa is a real surprise. Maybe I’ll get another year or two or maybe I won’t.
My father died of Prostate cancer doubling my chance of getting it. I got it at 62 because I got BRCA2 from my mother, My brother got it at 77 because he did not get BRCA2.
Prostate cancer is constantly changing. It gets more aggressive and doesn’t even need testosterone as the years go by. They have found that giving people testosterone after they had drugs like Zytiga stop working can Kill some of the cancer cells and make people capable of Having Zytiga work again. That’s called BAT. It’s sort of overwhelmed the cancer cells that have gotten used to low testosterone and kills them. I can’t do that because BRCA2 would cause my PSA arise astronomically with testosterone.
Here is an Article about a BAT, Genetic issues and advanced prostate cancer. Some really interesting stuff in this article you probably would like reading it. Not sure you’re going to be able to get to it where you’re at.
https://online.flippingbook.com/view/150884930/2-3/
I’ve been on ADT for over eight years. Started 04/2017. Plus I Had a 6 month shot in 2014
I am 6’4” and weigh 191 today. I will get it back down to 189 in a few weeks. That’s what I’ve weighed for about the last 25 or 30 years. Before that, I was lighter. So the whole time I’ve Had cancer I weighed about the same. I am thin since I don’t weigh a lot for my height. I like to keep it that way. I do have a little bit of a belly.due to ADT, but it does not extend past my chest.
After eight years on ADT, my muscles have deteriorated a lot. That’s why I go to the gym three days a week. About a year ago, I found out I couldn’t get off the ground without pulling myself up on something. I started going to the gym and exercising and within about three or four months I was able to get off the ground on my own. Because I have no testosterone to speak of, it is hard for me to build much muscle.
I run 1 mile on a track twice a day. I’m not winded at all when I get done. My heart rate isn’t even very high less than 110. I can’t run real fast since I’m 78. I built up to running that distance by taking electrolytes. At first, I couldn’t run the whole way and had to walk some of it, but I Took electrolytes and found I could run the whole way. I now can do it without the electrolytes since I’ve built up stamina. I don’t really need to run any further at this age. I keep in real good shape between running and the gym. I also closely regulate how much I eat.
I never get nervous. I really don’t get anxious before my monthly PSA test results, After this many years I have lost the anxiety.
I live in a major city in California. I have a park across the street from my house with a quarter mile track. Very convenient to run twice every day.
I used to have sex almost every day before surgery. Surgery made it difficult ADT made it impossible. When you are on ADT, you don’t think about it much. A pretty girl does attract me, however. Wishful thinking. They didn’t offer injections like Trimix 16 years ago, if they had I would have used it.
What it comes down to is, I got 16 years more time to live following surgery . You can’t always have everything.