Slow testosterone growth

@denis76
This is pretty standard procedure. If somebody’s PSA is undetectable, there is no reason to do treatment. Pluvicto is done when there are multiple metastasis. Radium-223 when there are Bone metastasis to treat.

Must admit this is the first time I’ve seen somebody from Russia in this Forum. You do seem to have the ability to have advanced treatments.

It’s good to hear your treatments are working.

@jeffmarc

Well, thank you, Jeff!

I've heard that there are very good specialists in America. I've read a lot of articles by American specialists.

My journey to zero PSA was very long, 18 months in fact.

My doctor says my PSA is trending well, and maybe I'm just skeptical.

I must say that in addition to conventional medical treatments, I tried two alternative methods (using natural remedies), and I don't know whether they worked or not, because when I learned I had cancer, I "shot at everything I could," purely on intuition.

@denis76
It’s interesting that you should say that. The weekly newsletter I get from ancan.org Had an article from one of the guys that is the moderator on the low and intermediate Forum.

He is the publisher of the Welness Letter which discusses many health issues. Here are his findings about dietary supplements and prostate cancer.

When we look closely at the research, the picture is clearer than the marketing suggests. So far, no dietary supplement has been shown in solid human studies to prevent, treat, or slow the progression of prostate cancer once diagnosed. Some supplements that once sounded promising haven’t held up in careful trials. Others affect lab markers, such as PSA, without improving outcomes that truly matter. In fact, some supplements—like high-dose vitamin E or selenium—have actually shown potential harm in trials.

Not sure you can access this from where you are, but here is the full letter he wrote about this
https://ancan.org/stuart-jordan-is-it-ok-to-take-supplements-after-a-prostate-cancer-diagnosis/

@jeffmarc

Thanks for the article, it's accessible!

About the harm of vitamin D and foods containing selenium, magnesium, and zinc. All of these promote testosterone synthesis. But the contradiction lies in the fine line here: some substances promote lymphocyte production and affect the immune system.

My doctor simply told me, "You can eat everything in moderation," and he also advised me to drink green tea to lower testosterone.

I heard another very good doctor say, "Diet doesn't affect cancer."

During chemotherapy, I drank a lot of pomegranate and carrot juice, for example.

I've heard many people say I should give up meat, milk, and eggs. I reduced the amount of these, but I didn't give them up completely.

I'm not a doctor, but my opinion is that diet does matter. How else can you explain why some people's cancer goes away and doesn't return in the later stages?

@denis76
It is red meat that’s the problem.. Following a Mediterranean diet with chicken and fish is just fine, Don’t eat the poultry skin, however since it’s fat.

Again moderation is important. It can’t hurt to eat a steak once a month. It’s doing it every day that’s the problem.

For milk it’s the fat in milk so drinking non-fat milk is the best. I get Soy milk for cereal and it works well, tastes just fine. I do use nonfat milk to steam for my cappuccino every morning. It even steams better than milk with more fat.
‘
Eggs are a real conundrum. Yes, you can eat a few a week, Eating a lot of them may be a problem. There are studies that show that more than four or five a week is a problem for prostate cancer patients. It’s the yolks that are the problem.

I have followed these diet recommendations for years. I’ve had prostate cancer for 16 years. It has reoccurred four times. I have BRCA2, which makes it very aggressive. If I stop or cut back the pills I’m taking for a very short time my PSA rises quickly . I am 78 and run on a track twice a day for a mile and go to the gym three days a week for an hour to work on weights.

All of those things are supposed to help keep the cancer from returning quickly. Maybe they work, I’m just glad that the drug I’m on now keeps working, I’ve had 25 months of undetectable cancer.

@jeffmarc

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!

@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.

@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!

@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.

@jeffmarc I 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