Is PSA rise inevitable after hormone therapy?

Posted by rwski79 @rwski79, Mar 18 9:31am

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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When you are a Gleason nine there is a high percentage chance that it will reoccur. If you get a decipher test, it can give you a better idea of how aggressive it is for reoccurring, Yes, you are a nine, but that test is another factor In telling you, whether or not reoccurrence is more likely.

I know people with the Gleason nine that are still alive decades after they had their treatment. As is always the rule with prostate cancer, no two people are the same.

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I think the jury's still out with the newer drugs. As I mentioned in another thread, the TITAN study for ADT+Erleada to treat mCSPC finished after 4 1/2 years with a large percentage of participants not having reached castrate resistance yet (and more than half still alive), even though many of them had had metastatic cancer for a while before the study started.

(The previous approach was to start on something different like Zytiga for mCSPC, and hold off on the newer -lutamides until the cancer developed castrate resistance, but TITAN showed it was more effective to start on Apalutmide right away, both for delaying progression and for increasing overall survival.)

I'm at 3 1/2 years on ADT and Erleada so far and still have undetectable PSA (I've never had chemo, but have had radiation). Like many here, I'm enrolled in the international IRONMAN study to track my progress, so we're the ones who will provide the data for the next round of treatments and best practices.

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@jeffmarc

When you are a Gleason nine there is a high percentage chance that it will reoccur. If you get a decipher test, it can give you a better idea of how aggressive it is for reoccurring, Yes, you are a nine, but that test is another factor In telling you, whether or not reoccurrence is more likely.

I know people with the Gleason nine that are still alive decades after they had their treatment. As is always the rule with prostate cancer, no two people are the same.

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Thanks for your response. Regarding the decipher testing I took the Guardant 360 test resulting in “no reportable somatic alterations with associated therapies being detected” Detected alterations/bio markers were all stated as being “variants of uncertain clinical significance” ranging from.2% to 3.3% being PLCG2 T1062A. So, apparently nothing to create concern or direction in medical planning. Maybe also a good sign that recurrence is a ways off, maybe not at all? I sure hope so. By the way, I am in the Aresens (Bayer sponsored)48 week trial measuring cognitive outcomes /differences between participants taking Darolutamide (Nubeqa) and Enzutamide(Xtandi). All quite interesting! Now if I could fix the hot flashes I’d be happy- In another post I believe you mentioned Embr Wave for hot flashes. I bought one and it has not been successful so far. However, JisuLife headset style fan is my new daytime friend and bedside companion! Again, thanks for your comments and advice- it brings hope to a very worrisome journey.

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@northoftheborder

I think the jury's still out with the newer drugs. As I mentioned in another thread, the TITAN study for ADT+Erleada to treat mCSPC finished after 4 1/2 years with a large percentage of participants not having reached castrate resistance yet (and more than half still alive), even though many of them had had metastatic cancer for a while before the study started.

(The previous approach was to start on something different like Zytiga for mCSPC, and hold off on the newer -lutamides until the cancer developed castrate resistance, but TITAN showed it was more effective to start on Apalutmide right away, both for delaying progression and for increasing overall survival.)

I'm at 3 1/2 years on ADT and Erleada so far and still have undetectable PSA (I've never had chemo, but have had radiation). Like many here, I'm enrolled in the international IRONMAN study to track my progress, so we're the ones who will provide the data for the next round of treatments and best practices.

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Thanks for your response! I was advised by one oncologist to do triplet therapy by adding docetaxel(chemo) to Eligard and Nubeqa but declined chemo as my PSA is not detectable and no known spread, even though I had lung nodules that disappeared with Eligard injections . Another oncologist encouraged me to not to have chemo at this point and felt that chemo was a long way off- sure hope so. Even though, it still worries me that I am making the best informed decisions about it all. This all seems to paralyze me at times.
Thanks for your post and best to you!

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@rwski79

Thanks for your response. Regarding the decipher testing I took the Guardant 360 test resulting in “no reportable somatic alterations with associated therapies being detected” Detected alterations/bio markers were all stated as being “variants of uncertain clinical significance” ranging from.2% to 3.3% being PLCG2 T1062A. So, apparently nothing to create concern or direction in medical planning. Maybe also a good sign that recurrence is a ways off, maybe not at all? I sure hope so. By the way, I am in the Aresens (Bayer sponsored)48 week trial measuring cognitive outcomes /differences between participants taking Darolutamide (Nubeqa) and Enzutamide(Xtandi). All quite interesting! Now if I could fix the hot flashes I’d be happy- In another post I believe you mentioned Embr Wave for hot flashes. I bought one and it has not been successful so far. However, JisuLife headset style fan is my new daytime friend and bedside companion! Again, thanks for your comments and advice- it brings hope to a very worrisome journey.

Jump to this post

That cognitive test sounds real interesting. Darolutamide It’s supposed to not pass the blood brain barrier and therefore create less brain fog. I Don’t suppose you know which drug you are taking, Those are usually blind tests.

I started taking Darolutamide 18 months ago but after being on ADT for eight years, I don’t think it’s gonna make a difference. It works so much better than Zytiga did, for me but the brain fog drives me nuts sometimes.

Vitamin B6 is supposed to help with neuropathy. We were talking about it at the Ancan.org advanced prostate cancer weekly meeting Yesterday. Rick, who runs the meeting with a Gleason eight, he is 17 years in remission. He had neuropathy problems and found that vitamin B6 made a major difference.

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Thanks . I am on Darolutamide and can switch to Enzalutamide after 12 weeks if I choose, but so far so good as is. Do you think ADT or Darolutamide or combo causes some brain fog? Or Zytiga did it before Nubeqa? Thought, as you say, fog is not as present with Nubeqa. Good to know about B-6 and Rick- wonder if he had neuropathy before and/or after any chemo. Want to avoid chemo if I can - scares the bajeebers out of me!

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@rwski79

Thanks . I am on Darolutamide and can switch to Enzalutamide after 12 weeks if I choose, but so far so good as is. Do you think ADT or Darolutamide or combo causes some brain fog? Or Zytiga did it before Nubeqa? Thought, as you say, fog is not as present with Nubeqa. Good to know about B-6 and Rick- wonder if he had neuropathy before and/or after any chemo. Want to avoid chemo if I can - scares the bajeebers out of me!

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Chemo is not as bad as you suspect. Yes, people can get a little sick after the second or third day, but most people have no problem handling it. Better than it used to be.

I know a lot of people on Darolutamide, Many are on it as their single drug as I am. It really helps that it has a lot fewer side effects than the other lutamides. Guess you Could try out Enzalutamide to find out!!

Lupron and Zytiga together do a great job giving someone brain fog. Zytiga may not specifically list it as one of the side effects, but it’s too common to deny there is some correlation.

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Just to add a data point, I have had no brain fog (at any point over the past 3 1/2 years) on ADT + Apalutamide, but everyone's body reacts differently. I did have a lot of fatigue at first, but I don't know how much was from the meds, and how much from the spinal compression and muscle atrophy.

Hot flushes? Yeah, they happen. 🥵

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@jeffmarc

That cognitive test sounds real interesting. Darolutamide It’s supposed to not pass the blood brain barrier and therefore create less brain fog. I Don’t suppose you know which drug you are taking, Those are usually blind tests.

I started taking Darolutamide 18 months ago but after being on ADT for eight years, I don’t think it’s gonna make a difference. It works so much better than Zytiga did, for me but the brain fog drives me nuts sometimes.

Vitamin B6 is supposed to help with neuropathy. We were talking about it at the Ancan.org advanced prostate cancer weekly meeting Yesterday. Rick, who runs the meeting with a Gleason eight, he is 17 years in remission. He had neuropathy problems and found that vitamin B6 made a major difference.

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I think that probably you could add B1 and especially B12 vitamin. They all have (B1, B6, B12) different effects on nerve regeneration. My husband had bad case of shingles 10 years ago and I insisted that doctor gives him B12 shot (common practice in Europe) and his shingles were gone in couple of days ! It is best to take B12 sublingual tablets, much better absorption. With age guts loose good absorption capabilities for some vitamins and minerals. Also, if possible add Alpha Lipoic Acid (sustained ) and good quality fish oil. I had good result with those supplements for some damage to my lingual nerve.

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@jeffmarc

That cognitive test sounds real interesting. Darolutamide It’s supposed to not pass the blood brain barrier and therefore create less brain fog. I Don’t suppose you know which drug you are taking, Those are usually blind tests.

I started taking Darolutamide 18 months ago but after being on ADT for eight years, I don’t think it’s gonna make a difference. It works so much better than Zytiga did, for me but the brain fog drives me nuts sometimes.

Vitamin B6 is supposed to help with neuropathy. We were talking about it at the Ancan.org advanced prostate cancer weekly meeting Yesterday. Rick, who runs the meeting with a Gleason eight, he is 17 years in remission. He had neuropathy problems and found that vitamin B6 made a major difference.

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Vitamin B6 I just started to raise my RBC count. Didn’t know it helps neuropathy also. Thanks Jeffmarc.

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