Advanced Prostate Cancer

Posted by stackthewood @stackthewood, Feb 27, 2023

I had prostatectomy in 2008. In October 2022, my PSA was 82.0. A second PSA test was 89.0. Then, I had a PSMA/PET Scan. This Scan showed the prostate cancer had spread to various parts of my body. The cancer had been detected in my neck, my chest, my abdomen, my pelvis, and my lower spine. It was classified as Advanced Prostate Cancer. My doctor ordered the injection of Lupron every 3 months. I had the first injection in early January 2023. Also, he prescribed Erleada (Apalutamide). I take four 60 mg tablets every day. I have taken these tablets for about one month. About 10 days ago, I had another PSA test. This time my PSA was 0.81! Is that possible for the PSA to drop 99%? My doctor says I will continue to have the injections and continue on the medication. Please advise. Thank you.

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Thank you for bringing this issue to my attention. I once thought of it and researched procedures such as High-Intensity Focused Ultrasound (HIFU), brachytherapy, cryotherapy, radiation therapy, and salvage prostatectomy. I was then discouraged by their side effects. Problem side-effects seem to be incontinence and erectile dysfunction. I don't know if perhaps you or anyone can come up with any suggestions.

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Profile picture for ellen45 @ellen45

My husband has just 6 months to go on a two year abiraterone + prednisone + Lupron depot (every three months) following radiation. He is Gleason 4 +5 advanced prostate cancer. We shall see what happens when it all stops. His psa is undetectable now, but who knows what will happen. Since we started treatment he has been doing ok. He is 81 and has slowed down a lot, but he does’t complain and we spend all of our time together. He has chosen not to have any further treatment other than palliative care if necessary following the end of the hormone therapy. I will let everyone know what happens.

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I am also encouraged by your story and think that it will help a lot in my decision-making. Because you're saying that his PSA is now undetectable, but who knows what will happen? what more do you still want to check if his PSA is now undetectable.

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Profile picture for ellen45 @ellen45

My husband has just 6 months to go on a two year abiraterone + prednisone + Lupron depot (every three months) following radiation. He is Gleason 4 +5 advanced prostate cancer. We shall see what happens when it all stops. His psa is undetectable now, but who knows what will happen. Since we started treatment he has been doing ok. He is 81 and has slowed down a lot, but he does’t complain and we spend all of our time together. He has chosen not to have any further treatment other than palliative care if necessary following the end of the hormone therapy. I will let everyone know what happens.

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Profile picture for thenglm @thenglm

I am also encouraged by your story and think that it will help a lot in my decision-making. Because you're saying that his PSA is now undetectable, but who knows what will happen? what more do you still want to check if his PSA is now undetectable.

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Thank you. We shall see.

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I had oligometastatic cancer on my sacrum six years after my radical prostatectomy. They radiated it and put me on Lupron and Abiraterone. After three years of undetectable PSA and clear PSMA PET scans, I went off ADT because of the side effects and have been off for nine months. My PSA has remained undetectable although the side effects have mostly remained. From what I’ve read, I can probably expect the side effects to last another year as it may take that long for my testosterone to recover to where it was.

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Profile picture for thenglm @thenglm

Thank you for bringing this issue to my attention. I once thought of it and researched procedures such as High-Intensity Focused Ultrasound (HIFU), brachytherapy, cryotherapy, radiation therapy, and salvage prostatectomy. I was then discouraged by their side effects. Problem side-effects seem to be incontinence and erectile dysfunction. I don't know if perhaps you or anyone can come up with any suggestions.

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I suggest you do something more pro-active than just staying on hormones; they have side effects which you may not feel, but still do harm.
There are side effects to getting out of bed in the morning, but we still have to get up, right?
If you choose radiation be absolutely sure to include your pelvic lymph nodes - look up the SPORTT trial for complete info.
Phil

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Profile picture for melcanada @melcanada

After 2 years zolodex they added xtandi or enzymes 4k a month covered expect it to work average 18 most then something else

Psa back down fast

78 and appreciate life each day

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Old news Abiraterone not working Last hope LU 1tt which I qualify for 80 feel great but PSA 424

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I suggest you talk to you talker about switching to Nubeqa (Darolutamide) and starting chemotheropy, if you are healthy enough to handle it. Advanced Prostate Cancer high volume requires more systemic treatment called triplet therapy. Nubeqa has less side effects than the other ARSI's and it work better and longer.

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Profile picture for narus @narus

I have not been in your position my PSA was 4.19 then without treatment at all it went down to 3.
I was on Lupron for six months and it ruined my life for a year. I am on testosterone therapy about a year, lost 40 pounds and feel great.
I am 65 and if I had to go back on Lupron I would start looking for nursing homes. It severely degraded my quality of life.

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I agree.

I just finished a year on degarelix. I had to get monthly injections which I gladly chose over Lupron (once every 3 months.)

Looking back at the year I was on Lupron, I hit 5.4 miles walked per day for a month about halfway through my year on the drug. Somehow I forced myself to exercise but I recall feeling lousy mentally and physically.

Degarelix is no picnic but I had many days of 10 miles walked while on it.

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My story is very similar
I had my prostate “ successfully”removed in 2011. Went six years undetectable PSA. Because of my general good health and my doctor retiring, I didn’t go to a doctor for 5 1/2 years. In October last year I was found to have a PSA of 37. By the time I got to MD Anderson in January it was 168. I have high volume metastatic prostate cancer with extensive metastasis to spine ribs both femur pelvis right arm and maximal bone in face (plus multiple lymph nodes).
I am now at Houston Methodist and on Orgovyx and Nubeqa.
My PSA was .07 as of last month. So yes, a rapid drop indeed can happen.
I’ve decided to not do chemo and pray that I can hold my PSA low long enough to keep the cancer idle until better treatments come around.

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