In praise of Orgovyx

Amen I’ve been on it for about 7 months. As for now it’s keeping me alive. I’m stage 3 77 years old non metastatic thank God and Orgovyx so far. Good luck my friend.

@thnx4beingthere, welcome! Don't you hate when you have questions between doctor visits? And some questions you just want to ask others who have been there. Ask away!

How are doing on Nubeqa and Orgovyx?

@colleenyoung Thanks for asking it has all arrived I just haven’t committed I have so many reservations having a problem setting a final date to start. Looking at the new year to start just really having a hard time because I feel so good right now !
My schedule slows first week of Jan so I can accept the changes hopefully and become acclimated to all this. Kind of having a hard time with it all to be quite honest

Christmas Eve marks one year of Orgovyx for me, with the likelihood of six-twelve months more. I've not taken Lupron, so can't comment about the difference. My issues seem primarily from having no testosterone, which Orgovyx is doing a great job of controlling. Side effects include weight gain, muscle weakness, fatigue, no libido or erections, hot flashes, loss of body hair, and diarrhea. At 74, I'm exercising more vigorously to help reduce fatigue, and hot flashes are usually mild. A gastroenterologist is helping me get my digestive system under better control. PSA and Testosterone have been < .01 since tested in May following radiation. To me, a distinct advantage of a daily pill is that its effect dissipates more quickly when discontinued, but I'm not there yet. I'm grateful for the progress of medicine.

I've been on Orgovyx for almost a month. I have been relieved to be on it because I am hoping that it is killing off most of my cancer cells, as the data shows it can be expected to do in most cases. I haven't had a PSA since I started the pills, and I have no other evidence the drug is working, but I have no evidence it isn't.

For the moment, I live in blissful ignorance, grateful for all the brilliant minds who have worked over the years to come up with all these ways to torture us.

I've spent a lot of time looking for data that will convince me and my RO that I don't have to serve out the full sentence the standard of care is dishing out for me: 2 years.

The side effects I've experienced so far aren't bad, but I see that far worse ones are out there, about to pounce at any time.

@climateguy

Orgovyx does not directly kill cancer cells. ADT doesn’t work that way.

Effect on Cancer Cells: Because prostate cancer cells generally require testosterone to fuel their growth, reducing testosterone to very low levels causes the cells to grow more slowly, stop growing, or shrink, but it does not necessarily kill them outright.

While it does not directly "kill" the cells in the traditional sense, this starvation method is highly effective at managing and slowing the progression of advanced prostate cancer.

Orgovyx never properly wore off after taking it for six months. My testosterone hasn't returned to low normal 14 months after stopping, my estradiol is almost zero, and my FSH (the hormone that tells the body to make testosterone) is off the charts high. I'm starting to develop high cholesterol which I never had before, and now have full-blown osteoporosis.

So I probably won't die from prostate cancer, but instead from the side effects of Orgovyx.

I do finally have an appointment with an endocrinologist in January (made the appointment in August of this year) so hopefully can get to the bottom of what's going on.

@scottbeammeup
Orgovyx has a 25 hour half-life. It is totally gone from your system. People confuse the ADT drugs with a low testosterone. Orgovyx causes the low testosterone, it does not prevent your testosterone from coming back. Your body is doing that. Something else is going on with your body that is preventing the testosterone from coming back. This happens to some older people, Their testosterone never returns to a normal level.

You could try talking into a palliative care doctor and see if they can help you get your testosterone to return.

If you have osteoporosis, you should be on bone strengtheners Like Fosamax. Xgeva or Zometa. They can make your bones Stronger.

@jeffmarc re: "orgovyx does not directly kill cancer cells".

I believe I got the idea that ADT can kill cancer cells from a Prostate Cancer Research Institute video featuring Mark Scholz. I can't find the video right now, but I did find a paper PCRI put out that states the theory I thought I heard Scholz talk about. A percentage of prostate cancer cells are androgen dependent, and depriving them of testosterone kills them. I attached a graphic from the paper.

In the video I thought I heard Scholz state that something like what is depicted in the graphic happens in the more common type of prostate cancer. He commented that this means ADT starts a selective breeding process where the resistant cells end up being the predominant cells so that the tumors that grow back afterwards will be resistant to ADT. I thought what he was describing was an observation that this is how metastasized tumors become ADT resistant.

I don't know if this is a widely held view. I may be completely mistaken to think Scholz knows what he is talking about. Up until I saw his video I described ADT to myself as stopping tumor growth which I am very much in favor of. I guess I'm so much in favor of tumor death I didn't study deeply enough to be able be confident of my previous statement.

@climateguy
When I posted this exact question in AI, it did come up with the exact words you are saying here. The weaker cells die and the stronger ones survive.

What bothers me about this is, it leaves open the possibility that any particular metastasis may have some of both types of cells and as a result, it never actually dies. Or does it completely kill off some mets and leave others.

I have heard about the fact that the more resilient cells have ability to overcome ADT And that results in what I have, castrate resistant prostate cancer. Definitely an uncertain long term solution.