How long to does one stay on hormone therapy Orgovyx?

Posted by garyhu @garyhu, Sep 22 4:41pm

Psa < 0.1 after radiation n 6 months hormone therapy- psa was 47 n had gleason scores of 8 - 7 - 6 n cancer detected in seminal vesicles - what's the norm for continuing hormone therapy n why

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Profile picture for jeff Marchi @jeffmarc

I’ve been on it nine years. If you want The best progression free survival you need to listen to what your doctor tells you.

You need to do a few things to be able to manage ADT (Orgovyx). For one you need to do a lot of exercises. I go to the track twice a day and run/jog a mile Each time. I also try to go to the gym three times a week and do weight training. This can offset the fatigue some people have.

I’ve never had the fatigue problem, but I’ve had others. I used to get a lot of hot flashes. I found ways around that.. When you are on ADT you will find your muscles deteriorate quickly. Your weakening stomach muscles will cause you to have a belly. Your other muscles will not keep up unless you exercise and do weight training.

Another thing you need to do is take bone straighteners because ADT weakens your bones. I took Fosamax pills once a week for six years and now I am on Zometa infusions every three months. A bone doctor at a recent prostate cancer conference said that everybody on ADT should be taking bone strengtheners. You should also be taking calcium and vitamin D. Calcium citrate is the preferred calcium and you should be taking 500 mg twice a day to keep your bone strength up. These are all things your doctor should’ve talked to you about. If not, you should talk to your doctor about it because these things are important.

If your doctor is not willing to do all these things, you need to get a second opinion at a center of excellence. You wanna make sure you are treated properly, especially since you have what appears to be a very aggressive cancer.

You should get a Dexa scan to find out how strong your bones are, They are going to get a lot weaker with ADT so you want to know how strong they are to start with. Ask your doctor about this.

Your prostate cancer case was apparently quite aggressive Or they would not have said you needed orgovyx (ADT) for three years.

Gleason eight only requires 18 months by the NCCN, that sets the standards for prostate cancer treatment. I would imagine your biopsy has shown that you have more aggressive problems withyour prostate cancer.

There must be more issues in your biopsy than you are aware of.

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Thanks Jeff, just finished my Proton treatments on Friday and now turning to how to manage my Orgovyx. Do you have recommended brands for bone strengtheners and bone density supplements. It is hard to sort out the hype from reality.

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Profile picture for surftohealth88 @surftohealth88

Jeff, do you perhaps know what is recommended ADT time for adjutant or early salvage if PSA is undetectable ?
Thanks so much in advance : )

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I was told 3 years of ADT, and 2 years of zytiga. But the question is, how long until resistance and how might that change the plans put in place, which in my case was in early August. By the way, I have yet to feel any of the noticeable side effects that others describe (hot flashes, loss of libido, high blood pressure, etc …)

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....I had to double check the shorthand 'n' meaning AND. Had it been NO seminal vessels some of the advice would have caveats.
For those reading this with prostate (likely) contained disease there is emerging information. One study found that those without the certain biomarker had no benefit with long term androgen deprivation therapy, 18-30 months [LATD/LTD], versus those on short term therapy 6 months, [STADT/STDT]. Those with the biomarker revealed an added benefit of disease free progression with LATD versus STADT. It was in the 15% range. It might be noted that the underlying data derived was before the general application of the newest technologies. [Dye enhanced 3T mpMRI, PSMA PETCT scans, (ultrasensitive PSA hallmarks?) and focused spot external beam radiotherapy {e.g. SBRT}] Speculation: The 15% difference may be less and essentially a toss-up for those willing or unwilling to get a marginally lessened progression benefit. This biomarker's discoverer is in search of commercialization opportunities,

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Profile picture for thmssllvn @thmssllvn

....I had to double check the shorthand 'n' meaning AND. Had it been NO seminal vessels some of the advice would have caveats.
For those reading this with prostate (likely) contained disease there is emerging information. One study found that those without the certain biomarker had no benefit with long term androgen deprivation therapy, 18-30 months [LATD/LTD], versus those on short term therapy 6 months, [STADT/STDT]. Those with the biomarker revealed an added benefit of disease free progression with LATD versus STADT. It was in the 15% range. It might be noted that the underlying data derived was before the general application of the newest technologies. [Dye enhanced 3T mpMRI, PSMA PETCT scans, (ultrasensitive PSA hallmarks?) and focused spot external beam radiotherapy {e.g. SBRT}] Speculation: The 15% difference may be less and essentially a toss-up for those willing or unwilling to get a marginally lessened progression benefit. This biomarker's discoverer is in search of commercialization opportunities,

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The thing is, they discussed the fact that this is true with intermediate patients. So those with extensive PC do not benefit apparently.

As demonstrated below, intermediate risk patients who were biomarker negative did not benefit from short-term ADT. Conversely, those with a positive biomarker status had significantly decreased distant metastases rates when short-term ADT was added to radiotherapy (HR: 0.33, p< 0.001):

Here is an article from ASCO that actually discusses this
https://www.urotoday.com/conference-highlights/asco-2023/asco-2023-prostate-cancer/144902-asco-2023-development-and-validation-of-an-ai-derived-digital-pathology-based-biomarker-to-predict-benefit-of-long-term-androgen-deprivation-therapy-with-radiotherapy-in-men-with-localized-high-risk-prostate-cancer-across-multiple-phase-iii-nrg-rtog-trials.html

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What is the best way to monitor for possible heart attacks, strokes, and for other cardiovascular risks?

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Profile picture for paulsheldonfoote @paulsheldonfoote

What is the best way to monitor for possible heart attacks, strokes, and for other cardiovascular risks?

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@paulsheldonfoote
The CT scan can give you a lot of information about your cardiovascular system. I just had one and again they say I have arteriolosclerosis, but my doctor says it’s not bad enough to do anything about.

Another test I’ve had is the echocardiogram

An echocardiogram, often called an "echo," which is an ultrasound test that uses sound waves to create moving pictures of the heart's structure and function. It provides detailed real-time images to help doctors evaluate the heart's chambers, valves, walls, and blood flow

You can also wear a Holter monitor for a day or a week to see how your heart is reacting. It gives the doctors a tremendous amount of information. It’s like walking around with an EKG on. I had one for a week recently and it showed a lot of issues but just very short term non-impactful issues.

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Profile picture for garyhu @garyhu

Initially it was 3yrs on hormone therapy - not sure I can do 3yrs , I feel
like I'm wasting away

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@garyhu I'm in my ninth month of Orgovyx and the side effects aren't improving. I tend to lose hope from time to time and look forward to sleep, but I wake up to a better day. I'm supposed to be on ADT for two years, but I'm hoping to switch medications at 12 months and stop at 18. We'll see. You and I may be among the "lucky" ones with the most severe side effects. Hang on.

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Profile picture for paulsheldonfoote @paulsheldonfoote

What is the best way to monitor for possible heart attacks, strokes, and for other cardiovascular risks?

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@paulsheldonfoote
I'm lucky enough to have stage CII heart failure along with Stage 4 PCa. I was referred to a cardio-oncologist to monitor heart function while going through PCa treatments. Along with what Jeff said as far as intermittent testing, I have regular blood tests to monitor for specific cardiac enzymes. Cardiology, urology, and oncology are all monitoring bloodwork for something on a regular basis. Can you say pin cushion? First name basis with phlebotomy.

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Profile picture for jime51 @jime51

@garyhu I'm in my ninth month of Orgovyx and the side effects aren't improving. I tend to lose hope from time to time and look forward to sleep, but I wake up to a better day. I'm supposed to be on ADT for two years, but I'm hoping to switch medications at 12 months and stop at 18. We'll see. You and I may be among the "lucky" ones with the most severe side effects. Hang on.

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@jime51 - hey Jim - my 1st psa test was - < .01 which the say is undectable. I thought that was the goal. I follow Dr. Mark Schultz on Utube many great videos. He states many times If the numbers are correct nothing wrong with taking a holiday they call it. What is your thought? My only real side effect is ED - just not sure what it's doing to my insides. My adt is orgafux

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Profile picture for garyhu @garyhu

@jime51 - hey Jim - my 1st psa test was - < .01 which the say is undectable. I thought that was the goal. I follow Dr. Mark Schultz on Utube many great videos. He states many times If the numbers are correct nothing wrong with taking a holiday they call it. What is your thought? My only real side effect is ED - just not sure what it's doing to my insides. My adt is orgafux

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@garyhu Have a very honest talk with your oncologist(s) regarding Quality of Life vs. Longevity. I'm 74, a walking mass of arthritis, with lots of surgeries. My family rarely lives past 80, so my goal is a decent quality of life for 5-10 years. Oncologists are almost always focused on cure. My cancer is/was Gleason 7, N1M0 which means I had cancer in lymph nodes near the prostate but everything contained in the abdomen. I think another term is Oligometastatic, either Stage 3 or low Stage 4. The longer series of ADT is to allow more time for the combination of radiation and hormone therapy to weaken the cancer cells so they die when they try to divide and multiply. I have to weigh the possibility that some cells "escaped" during radiation and will show up later if I stop sooner....against the odds that I will be 77 or so when testosterone returns and I feel more normal again. Yes, ED is a sad outcome, and I tried Trimix shots but I have a reaction to the chemicals resulting in quite a bit of pain, so not a good option. Again, discuss your goals vs. the odds of the disease returning. My tests in May and August showed undetectable PSA and Testosterone.

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