Is PSA rise inevitable after hormone therapy?
In 2024 I had a prostatectomy & PSA rose, am a Gleason 9, stage 4. PSMA detected lung nodules (only area) that disappeared after Eligard injection and PSA became undetectable. Added Nubeqa for “doublet” therapy. Given the above, has anyone had PSA remain undetectable for a long period ? How long? Or is it inevitable PSA will rise with just doublet therapy? Is adding Chemo (Docetaxel?) INEVITABLE to keep PSA undetectable for longer? Have foot neuropathy so hesitate with chemo that risks more advanced, permanent neuropathy. So far hot flashes(big time!)only side effect from hormone therapy.
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Hot flashes a few days later but very very mild two weeks into meds..so far going well
An answer and tips if you do get hot flashes.
I had really bad hot flashes after a couple of weeks. I would wake up at night and the sheet would be soaked under me because I’ve been sweating so much. After a year, my oncologist prescribed depo-provera, Every three months, and the hot flashes became much milder and less frequent. Then I started Zytiga And the hot flashes came back, Not quite as intense.
There are other drugs that can stop hot flashes like depo-provera which I used it for four years without any problems. Other Hormones can do it.
I now wear a Wave 2 from embrlabs.com. The device has two buttons, and I have one set for hot flashes during the day and one set for all night.
Jeff I have the Wave 2 but have not noticed any relief after 2 weeks Of having the hot flashes set high for 3 minute intervals—-seems like it cools for a few seconds then ceases. Does the all night mode stay cool AND give relief? Fewer flashes? Shorter length of flashes? Exactly WHAT does it do for you?I get them every 45 minutes at night and touch the button each time but again not much relief if any—-maybe faulty gizmo? Thanks for your advice.
To set the device for the best configuration
Click the bottom left Feel button, scroll down to hot flashes and click it. Scroll down the hot flash cooler five click it, click on “hot flash cooler five” and hit start session. Click the Now round button where you hit start and it will stop the session. Now go back to the main feel screen. Hot flash cooler 5 Should be first in the list, hit the three dots in the right corner, Click on edit and make the temperature level maximum a five. Hit. Save Session. Want to repeat this for all night cool. Click the bottom left Feel button, scroll down to hot flashes and click it Pick all night cool, set The number of hours you want And start it. Then stop it and go back to the main feel screen all night cool Should be the first thing listed. Click the three dots select edit put the cooling on maximum all over to five and hit save session.
Now You have to set the buttons for what you want. To do that you go to settings/session presets. Click on “dotted button” and pick the hot flash five minute. It will probably be second in the list. Select it and hit OK.
Click blank button And select all night cool. Hit ok. DONE!
You now are configured hit the button with the raised dot two times and it will give you five minutes of cooling. Try hitting it the moment you start to feel the hot flash. It will come on a little bit and then will not get so intense.. When you’re ready to go to bed, double click the blank button and it will send cold waves. Occasionally you won’t even notice it at night, but it should stop flashes.
You can always reduce the cooling by following the above instructions.
I'm with you on the benefits of getting out on the trails and forest service roads on a mountain bike. It provides an enjoyable workout; and the time spent outdoors enjoying the forests and fields provides a much needed mental escape. We have been riding in the lowlands thus far this year. Still too much snow in the mountains, but it's starting to warm up. Keep on peddling!
Bill
I have been on Orgovyx, took a break now have bone lesions. Erleada did not work, so now on Xtandi, too soon to know how that is doing. Question. I am thinking about trying estradiol vs Orgovyx and shots for the bones. Not sure what to think, or how to approach my oncologist.
Spend some time looking up the patch trial on the web. You should be able to find enough information to supply your doctor so that they at least informed.
People have said their doctor won’t allow it because it is not FDA approved yet. There’s a lot of things that are not FDA approved that doctors do allow.
In some cases, you have to say to your doctor, I want to do this, And that is enough to let the doctor off the hook in case the FDA doesn’t approve it in the future.
Xtandi (Enzalutamide) and Erleada (apalutamide) work essentially the same. I would not expect different results from a different lutamide. I would definitely like to hear if you find it works for you. Many people in here would be interested in that fact. I’m surprised your doctor didn’t switch you to abiraterone, Which works very differently and can keep the cancer under control. If you have heart issues that may be one reason this wasn’t done.
Wish you the best.
@ajpernsteiner I would like to learn from your experience how you approached your oncologist. did you have PSA tests every three months after taking a break on Orgovyx?
I am surprised that you had bone lesions after the break. Can the lesions not be radiated? Did Xtandi work?
I ask because I was on Orgovyx for six months, starting from two weeks before my SBRT for Gleason 7 (3+4), Stage 2, unfavorable intermediate, positive on 8 of 14 cores, no metastasis. I am off Orgovyx for a week now. I am hoping for the best, but I'm not ruling out that there was undetectable metastasis before my treatment, and that I may have a recurrence in the future.
My second post-SBRT PSA test is this coming week and radiation oncologist consultation the week after. Maybe you can provide some tips on what questions to ask my oncologist. Before my treatment began, she said I might be on Orgoyx 8 months to a year, maybe longer, it depends. But after she reviewed my first PSA test result down to 0.36 from 7.9 and 10.5 at diagnosis, she said 6 months was enough.
I was glad to stop after 6 months, knowing that some of us who had radiation opted out of ADT and did well; one saw his PSA continuously declining the last 26 months post-radiation which is a very good trend. I hope mine does not begin to rise too soon.
@vircet
Not sure you are aware of the following
An early and influential study that showed prostate cancer progression can occur even with an undetectable PSA was published in the journal Cancer in 2007 by researchers at The University of Texas M. D. Anderson Cancer Center. The study was titled "Prostate cancer progression in the presence of undetectable or low prostate-specific antigen levels".
So even though your PSA was not rising during hormone treatment, you still may have metastasis that will cause your PSA to rise, once you stop hormones.
If I were to stop all prostate cancer drugs, I would want PSA tests for the first two or three months, monthly, to make sure nothing is coming back quickly. After that, you could have three months test for a while. After my salvage radiation, at which time I had a 6 Month Lupron shot, it took 2 1/2 years before my PSA started rising, but it did start rising again.
If you have a real clean biopsy That can help, but you did have a large percentage of cores with cancer. In that case, if you had a prostatectomy, it’s likely they would’ve found higher Gleason scores. Doesn’t always happen, but it happens quite frequently, Happened to me, went from 3+4 to 4+3.. I know people with 3+4 that it became an eight or nine Gleason after surgery.
@vircet Make sure you're getting the ultrasensitive PSA (uPSA) test. OHIP covers it for people in our situation. Studies like the one @jeffmarc cited have found (very rare) progression with PSA < 1.0 or (even more rarely) < 0.1, but AFAIK, none has yet found progression with PSA < 0.01 (ultrasensitive). My locum oncologist said it's, maybe, theoretically possible with NEPC, but he hadn't head of any documented cases either, so if your PSA stays under 0.01, the odds that something's happening could be in the "struck by a meteorite" risk zone — in other words , no point worrying.