Seeking your thoughts on PSA of .1 on Orgovyx and Nubeqa

Posted by ucla2025 @ucla2025, 5 days ago

Some of you might remember my sharing that my husband’s PSA kept rising after his prostatectomy, more positive lymph nodes were found by PSMA pet, and he was put on Orgovyx + Nubequ with a plan for radiation of the nodes. Then the docs preferred to do chemo because some of the positive nodes were in the abdominal area. Well, his PSA is now down to .1 ( in three months) and doc suggests holding off on any more treatments now. He says the hormone response is a very good prognostic sign. I admit it is nice to have a bit of room to breathe but what do you guys think? The post-surgery pathology is Gleason 9 (4 +5) and always described as high risk and aggressive. Does anyone have any experience with a situation like this? It feels odd to just “stop” after frantically chasing this for a year. “We need to hit this upfront and hard “ has morphed into “let’s not do anything just now”. I guess I am just kind of confused at this point. Any ideas?

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In a similar situation as your husband except when discovered, my cancer had already metastasized past the point of surgery being a viable option. Full Dx is in my profile for reference, but it suffices to say that the Orgovyx/Nubeqa doublet is my primary treatment. We did zap the prostate with IMRT but my RO specifically told me that this was an additional treatment and that the drugs would be the primary. One thing I don't see brought up often is somatic testing of the malignancy itself. My GUO doc was very adamant about the importance of the genetic makeup of the cancer for future targeted treatments when ADT/ARSI stumbles. Best wishes.

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good to know. I responded to ucla, because my doctors have great urgency while hers does not.

I was told by a nurse in training that once it's in the bones, it affects I forgot what. Even my radiologist said once it's in the bone, it's a death sentence.

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Profile picture for lacraig1 @lacraig1

good to know. I responded to ucla, because my doctors have great urgency while hers does not.

I was told by a nurse in training that once it's in the bones, it affects I forgot what. Even my radiologist said once it's in the bone, it's a death sentence.

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@lacraig1
There is no factual basis for that comment that once it’s in the bones it’s a death Sentence.

One was wrapped around the bone in my spine (L4) and I’ve been undetectable for 25 months since I had that metastasis zapped with three sessions of SBRT.

I couldn’t tell you how many people I know that have had their bone metastasis zapped and are still around years later. One guy who had multiple sessions and more than 12 bone mets and is still around a couple years later with no issues.

Dr. Scholz, who is one of the leaders of the PCRI conferences, has Based a lot of his practice on treating people who have metastasis with SBRT and saying they will go on to live normal lives. He prefers to wait until they show up in a pet scan and then zap them.

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Profile picture for jeff Marchi @jeffmarc

@ucla2025
13 years after my prostate cancer diagnosis I started on Orgovyx and Nubeqa. I’ve been on it for three years now and my PSA has stayed undetectable at < .1. You keep saying it’s at .1, Is it actually < .1?

The thing is hormone therapy does not eliminate the cancer. It will reduce it in size and stop it from growing and spreading. After six years of my being on hormone therapy, I did get a metastasis in the bone on my back, Previous CT scans had showed it might be there, but it was not significant. Had that zapped with SBRT radiation when I stopped Zytiga.. As long as you don’t have too many metastasis, they can zap them. It’s when you have more than about five that they like to use chemo. I know one guy that had a dozen of them in his bones zapped, A few at a time, and that resolved his problems for a while. Metastasis in the bone are not the end of the line. They even have radium 223 to treat multiple bone metastasis.

My history just for information, 8.5 years on hormone therapy
In 2010 I was 62 and a biopsy showed Gleason 3+4. My father died of prostate cancer and he had radiation so I decided to have surgery. After surgery they told me it was a Gleason 4+3. It was only stage two. 3.5 Years later it came back, I had a Lupron shot 2 months before 8+ weeks of radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1.25 years later went on Zytiga, which kept my PSA down for 2 1/2 years. After some AFIB Issues I switched over to Nubeqa. The last 25 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on my spine zapped 2 years ago. I did not find out I was BRCA2 Until five years ago. That’s why it keeps coming back, I’ve had four reoccurrences.

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@jeffmarc His last PSA was .1. The doc thinks next time it will be < .1.

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Thank you so much everyone for your responses, greatly appreciated. Radiation might be possible sometime but the RO we went to said he wouldn’t be comfortable radiating a bunch of little nodes in the abdomen that are close to vital organs located there. He said the side effects might not be worth it down the road. (My husband is 64.) That’s why the chemo option was put on the table. After all of your informative input I think I will consult another radiologist. We are treated by UCLA but the RO we saw is not a UCLA doc because we live three hours away from UCLA in Westwood. I did ask our UCLA oncologist about radioligand options and he seemed supportive of that option if it becomes necessary. I am also thinking maybe we could have radiation of mets sometime in the future if the hormones shrink things down to just a few avid mets. As the situation is now, there are a bunch of little mets that apparently would be difficult to “zap”. On an interesting note, all the docs we have seen described the situation as oligometastatic.

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Profile picture for mjp0512 @mjp0512

In a similar situation as your husband except when discovered, my cancer had already metastasized past the point of surgery being a viable option. Full Dx is in my profile for reference, but it suffices to say that the Orgovyx/Nubeqa doublet is my primary treatment. We did zap the prostate with IMRT but my RO specifically told me that this was an additional treatment and that the drugs would be the primary. One thing I don't see brought up often is somatic testing of the malignancy itself. My GUO doc was very adamant about the importance of the genetic makeup of the cancer for future targeted treatments when ADT/ARSI stumbles. Best wishes.

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@mjp0512 We had two tests right after the biopsy. The nurse said one was to look for “family” influences ( I guess like BRCA etc.) and the other was to look at the characteristics of the tumor itself. Or something like that. I was pretty overwhelmed at the time.

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Profile picture for jeff Marchi @jeffmarc

@lacraig1
There is no factual basis for that comment that once it’s in the bones it’s a death Sentence.

One was wrapped around the bone in my spine (L4) and I’ve been undetectable for 25 months since I had that metastasis zapped with three sessions of SBRT.

I couldn’t tell you how many people I know that have had their bone metastasis zapped and are still around years later. One guy who had multiple sessions and more than 12 bone mets and is still around a couple years later with no issues.

Dr. Scholz, who is one of the leaders of the PCRI conferences, has Based a lot of his practice on treating people who have metastasis with SBRT and saying they will go on to live normal lives. He prefers to wait until they show up in a pet scan and then zap them.

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@jeffmarc wow, I'll keep this in mind. My radiologist essentially said that when the bones get it, you're done.

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Profile picture for lacraig1 @lacraig1

@jeffmarc wow, I'll keep this in mind. My radiologist essentially said that when the bones get it, you're done.

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@lacraig1 My understanding is that in the bones might suggest a different treatment path but it is totally treatable as is the lymph node situation.

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Profile picture for lacraig1 @lacraig1

@jeffmarc wow, I'll keep this in mind. My radiologist essentially said that when the bones get it, you're done.

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I’m surprised an RO would say that in 2025.

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Profile picture for ucla2025 @ucla2025

@mjp0512 We had two tests right after the biopsy. The nurse said one was to look for “family” influences ( I guess like BRCA etc.) and the other was to look at the characteristics of the tumor itself. Or something like that. I was pretty overwhelmed at the time.

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@ucla2025
That was an hereditary genetic test, followed by a somatic genetic test. If either one shows a genetic anomaly, then maybe something different can be done in treatment. Good to hear you had both done. I didn’t have my hereditary test done until 11 years after I got prostate cancer. My treatment may have been different if they knew I had BRCA2.

The somatic test which is done on tissue or blood can be repeated if others tumors appear. Changes can occur in genetic issues with tissues. The hereditary test never changes.

I’ve heard many times that they cannot do SBRT radiation on certain metastasis that are in areas that could damage other tissue that is important. You might look into having proton radiation done on those spots, It is much more targeted. It might be able to zap them.

Dr. Carl Rossi at UCSD has been doing Proton radiation treatments since 1994 when they built a building for the machine in San Diego. The first patient was the person that invented it, He lived to over 100. Rossi has done Proton radiation on over 13,000 prostate cancer patients. You probably can find somebody closer, and San Diego is a long drive, But I figured I’d tell you about it.

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