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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I’m not in the same situation however because I have a metastatic PC and Gleason 9 I will make a comment, just left Mayo after a week of appointments and tests I came here for a second opinion and after all the tests and consultations the conclusion is to keep following the systemic treatment of Lupron and Abiraterone for as long as is working as difficult to accept as it is it actually makes sense

Zzotte

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Profile picture for zzotte @zzotte

I’m not in the same situation however because I have a metastatic PC and Gleason 9 I will make a comment, just left Mayo after a week of appointments and tests I came here for a second opinion and after all the tests and consultations the conclusion is to keep following the systemic treatment of Lupron and Abiraterone for as long as is working as difficult to accept as it is it actually makes sense

Zzotte

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@zzotte Thank you those thoughts are quite helpful.

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so did they recommmend he stay on Orgovyx/Nubeqa ? so they stopped chemo? I would guess they are trying to let him recover some from the chemo- his PSA is responding well and they can always do some radiation if they detect a PSA rise at some point.

I imagine they will revisit the situation in 6 months- get new PSA at that time and determine if any other treatment is necessary...it sounds like he is doing well and the ADT therapy should guard against any recurrence in the near future.

Sometimes a period of time where you can relax and catch your breath and sleep/recover from all the trauma and stress is very good medicine in itself. ( new edit) I would think the oncologist believes-at this juncture anyway- that chemo is not necessary. the stress to the body of chemo after RPros surgery would be debilitating and since ADT is working, no chemo for now..as Martha Stewart would say " a good thing!"

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I am confused as well. My Gleason was 7. I'm on hormone therapy and my PSA is now .01 after rapidly increasing. My PSMA was clear, though they found cancer in some lymph nodes and my seminal vesicle, which they removed.
They keep telling me that if they don't obliterate it all now, it will come back. If in the bones, then I am done. They don't care how low the PSA is now. It could be zero, if it is only zero under treatment. They say it will come back.
I think my doctors would disagree with yours. Who's right? Nobody knows right now.

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Profile picture for xahnegrey40 @xahnegrey40

so did they recommmend he stay on Orgovyx/Nubeqa ? so they stopped chemo? I would guess they are trying to let him recover some from the chemo- his PSA is responding well and they can always do some radiation if they detect a PSA rise at some point.

I imagine they will revisit the situation in 6 months- get new PSA at that time and determine if any other treatment is necessary...it sounds like he is doing well and the ADT therapy should guard against any recurrence in the near future.

Sometimes a period of time where you can relax and catch your breath and sleep/recover from all the trauma and stress is very good medicine in itself. ( new edit) I would think the oncologist believes-at this juncture anyway- that chemo is not necessary. the stress to the body of chemo after RPros surgery would be debilitating and since ADT is working, no chemo for now..as Martha Stewart would say " a good thing!"

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@xahnegrey40 Yes, he is staying on the Orgovyx + Nubeqa. He hasn’t had any chemo or radiation just the prostatectomy. Because of numerous positive lymph nodes the plan was to have chemo in the next few months but the doc seems to have lost the urgency for chemo. I guess that’s a good sign? The doc did mention he believed the hormones would work for several years and in that time the other systemic treatments would only get better perhaps skipping chemo and going straight to a radioligand which targets the PC cells better. Thank you for your comments I found them comforting.

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Profile picture for lacraig1 @lacraig1

I am confused as well. My Gleason was 7. I'm on hormone therapy and my PSA is now .01 after rapidly increasing. My PSMA was clear, though they found cancer in some lymph nodes and my seminal vesicle, which they removed.
They keep telling me that if they don't obliterate it all now, it will come back. If in the bones, then I am done. They don't care how low the PSA is now. It could be zero, if it is only zero under treatment. They say it will come back.
I think my doctors would disagree with yours. Who's right? Nobody knows right now.

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@lacraig1 So are they saying you need to have chemo to “obliterate” the micro mets that can’t be seen on the scan? Your scan was clear, right?
My husband had many visible positive nodes on his PSMA scan so they wanted to do chemo soon. Now it seems there is no rush. We were also initially warned about it getting into the bones. We were on the “obliterate” plan until a few weeks ago. Agree there seems to be no right answer. So confusing. The plan right now is to keep checking every six weeks for changes. I am going to ask for another PSMA in the new year so we can see the effects of the hormones on the lymph nodes. Even then, we won’t know anything about the micrometastatic cells that don’t show up. I feel like the hormones aren’t enough as obviously the PC is in his bloodstream.

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My doctors are using radiation and hormone therapy. Me, I would get another opinion. My cancer is undetectable apart from the PSA which is now going toward zero. Seven weeks of radiation and blast this thing.
They certainly see an urgency that your doctors don't. Your husband's cancer is even more aggressive than mine apparently My Gleason was 'only' a 7. They did do some other genetic work, but anyway. I thought my doctors were overreacting. They say the numbers back them.

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Profile picture for xahnegrey40 @xahnegrey40

so did they recommmend he stay on Orgovyx/Nubeqa ? so they stopped chemo? I would guess they are trying to let him recover some from the chemo- his PSA is responding well and they can always do some radiation if they detect a PSA rise at some point.

I imagine they will revisit the situation in 6 months- get new PSA at that time and determine if any other treatment is necessary...it sounds like he is doing well and the ADT therapy should guard against any recurrence in the near future.

Sometimes a period of time where you can relax and catch your breath and sleep/recover from all the trauma and stress is very good medicine in itself. ( new edit) I would think the oncologist believes-at this juncture anyway- that chemo is not necessary. the stress to the body of chemo after RPros surgery would be debilitating and since ADT is working, no chemo for now..as Martha Stewart would say " a good thing!"

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@xahnegrey40 Thanks for your edit. I find myself a bit less confused and a bit more grateful the hormones are working so well!

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Profile picture for ucla2025 @ucla2025

@xahnegrey40 Yes, he is staying on the Orgovyx + Nubeqa. He hasn’t had any chemo or radiation just the prostatectomy. Because of numerous positive lymph nodes the plan was to have chemo in the next few months but the doc seems to have lost the urgency for chemo. I guess that’s a good sign? The doc did mention he believed the hormones would work for several years and in that time the other systemic treatments would only get better perhaps skipping chemo and going straight to a radioligand which targets the PC cells better. Thank you for your comments I found them comforting.

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@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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Profile picture for lacraig1 @lacraig1

I am confused as well. My Gleason was 7. I'm on hormone therapy and my PSA is now .01 after rapidly increasing. My PSMA was clear, though they found cancer in some lymph nodes and my seminal vesicle, which they removed.
They keep telling me that if they don't obliterate it all now, it will come back. If in the bones, then I am done. They don't care how low the PSA is now. It could be zero, if it is only zero under treatment. They say it will come back.
I think my doctors would disagree with yours. Who's right? Nobody knows right now.

Jump to this post

@lacraig1
As long as you don’t have too many metastasis, they can zap them, even if they are in the bones. 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.

REPLY
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