At what point do you start Pluvicto?

Posted by beaquilter @beaquilter, Apr 8 11:01am

After the FDA just approved Pluvicto WITHOUT chemo, we're wondering if my husband would qualify for Pluvicto NOW? He's only done one dose of ADT and I THOUGHT it was plummet his PSA, he had the shot 2.5weeks ago on a Friday, then Monday had his bloodwork done and PSA went down a bit maybe 20-30 points, he had lowered it himself from 250 to 200 by taking supplements and diet etc....
He has stage 4 and it's in his lungs and bones already and still the only symptoms were peeing and ED..... after the ADT his symptoms are more tiredness and less strong (he goes to the gym daily)
It was a fight to get him to take the ADT shot to begin with and the other pills that are ADT and prednisone, he was told to not even start because his liver enzymes are elevated (because of his supplements)
Anyways, I know Pluvicto is ONLY used for castration resistant PC, but at this point, how do we even know? Part of what I'm reading online says he has to be on ADT for 18-24mths or something like that and the PSA starts rising again eventually, but another part says stage 4 that's metastatic like his is castration resistant, but that's only because the stories I've read the patients got diagnosed so much earlier and started treatment, I think my husband is unique in that it's such a devastating prognosis as the initial prognosis!!
Next week before Easter, he's going in for a chest CT and bone density scan, then the next day seeing the oncologist (and I think his second ADT shot- not lupron but firmagon) -a side note I remember from my other post there were questions about firmagon why not lupron but I think it's because lupron can make the testosterone/PSA shoot up and in my husband's case, you DON'T want that.
Also he's still peeing frequently, about every hour and a half at night, but last night was the first in many nights where he went 4 hrs! - don't think it's the ADT shot that's finally working, I think we just turned off the TV earlier than normal 🙂
My husband is going to get the blood test done again BEFORE the two appointments next week, so at least we can see his PSA and liver enzymes and at least him and I can THINK about stuff.
I feel so lonely and desperate, the doctors gave us/me hope of several years with treatment, but maybe it's just a money making scheme, my husband and I distrusts hospitals and doctors SO much, though I'm at my breaking point where I want to just give up and do what they say, my husband doesn't....so without treatment he probably has a year left!

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@jeffmarc

Xofigo Is commonly used when somebody has a lot of bone mets. It is the radium 223 treatment which is used in bone mets cases.

Hopefully it can help resolve some of the bone mets that he has.

Bone Mets should be zapped with SBRT but if there are too many Xofigo is a better choice.

Pluvicto can be used a second time. After Xofigo it might make sense. In Australia it is a pretty common treatment.

Have you had genetic testing?? Some people’s somatic tests (on blood or tissue) Have actually shown they have genetic issues like BRCA2 or ATM. That allows them to use a PARP Inhibitor, which can keep the cancer controlled.

Have you had hereditary genetic testing? Has it been offered to you by a doctor? You can get it done FREE with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
`
Prostatecancerpromise.org

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Yes, genetic testing was done and he would not benefit from treatments.

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@jeffmarc

Xofigo Is commonly used when somebody has a lot of bone mets. It is the radium 223 treatment which is used in bone mets cases.

Hopefully it can help resolve some of the bone mets that he has.

Bone Mets should be zapped with SBRT but if there are too many Xofigo is a better choice.

Pluvicto can be used a second time. After Xofigo it might make sense. In Australia it is a pretty common treatment.

Have you had genetic testing?? Some people’s somatic tests (on blood or tissue) Have actually shown they have genetic issues like BRCA2 or ATM. That allows them to use a PARP Inhibitor, which can keep the cancer controlled.

Have you had hereditary genetic testing? Has it been offered to you by a doctor? You can get it done FREE with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
`
Prostatecancerpromise.org

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Thanks Jeff.
My husband is dead set against chemotherapy. I'm the researcher in this
process.

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@jeffmarc

Xofigo Is commonly used when somebody has a lot of bone mets. It is the radium 223 treatment which is used in bone mets cases.

Hopefully it can help resolve some of the bone mets that he has.

Bone Mets should be zapped with SBRT but if there are too many Xofigo is a better choice.

Pluvicto can be used a second time. After Xofigo it might make sense. In Australia it is a pretty common treatment.

Have you had genetic testing?? Some people’s somatic tests (on blood or tissue) Have actually shown they have genetic issues like BRCA2 or ATM. That allows them to use a PARP Inhibitor, which can keep the cancer controlled.

Have you had hereditary genetic testing? Has it been offered to you by a doctor? You can get it done FREE with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
`
Prostatecancerpromise.org

Jump to this post

Yes he did a genetic something test and we got the results but so far the only thing we could translate, was that it's not a genetic cancer, meaning our son is relieved!
We talked to Radiologist once and he described it for the tumor by his prostate (I think, down there in the area)
at first when we saw the oncologist he said, radiology might not be needed, then he did a physical prostate exam and changed his mind, saying radiology might be needed sooner than later..
At least hubby and I have had some good talks now, he's still not trusting of the doctors but knows he has to do what they say, I think it really depends on the blood test next week, which is a few days before the scans and oncologist appointment, so we'll see.

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@1buffster1

I feel your frustration. My husband finished his pluvicto treatment last September
All was well until yesterday. His psa shot up to over 200. And another treatment called xofigo will be administered
His treatment was standard.
First zytiga then nubeca, pluvicto and noe xofigo.

We love our husbands and we are usually their best advocates
Take care of your self and prayer and taking vate of yourself is key. Stress will cause more harm on yourself.
If any others have gone through this regiment of drugs, could you share your experiences.

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Do you care to share what his "journey" was? and when he was diagnosed and what stage?
It's quite a downer to hear this, after reading that Pluvicto is a wonder drug for PC!

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@beaquilter

Do you care to share what his "journey" was? and when he was diagnosed and what stage?
It's quite a downer to hear this, after reading that Pluvicto is a wonder drug for PC!

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As many others have said on this forum, Pluvicto is not a wonder drug for prostate cancer. Data and experience to date say that it is works well for about a third of the patients who have treatment, produces mediocre results for about a third of the men, and doesn't work at all for the other third. Unfortunately, my husband is in the second third of patients, though I know of other men who have had very good results. The key is to go into Pluvicto treatments with realistic expectations, and gratitude for it being a treatment option for Stage 4 prostate cancer.

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@beaquilter

Do you care to share what his "journey" was? and when he was diagnosed and what stage?
It's quite a downer to hear this, after reading that Pluvicto is a wonder drug for PC!

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He is on his 4th year of treatment. He started Pluvicto in late March of 2024 finished in September of 24. He had no further treatment until next month starting xofigo.

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One thing to check is to make sure your insurance company is onboard with using Pluvicto at this point. Sometimes insurance companies don’t follow so quickly after FDA approval.

ADT doesn’t directly cause PSA to plummet. ADT results in suppression of testosterone, which starves/weakens prostate cancer, which results in a reduction in PSA.
> What is his testosterone level now?
> What is his testosterone level prior to starting ADT?

If his PSA is not reduced and his testosterone isn’t reduced either, that’s a different problem (and remedy) than if his PSA is not reduced but his testosterone is.

Then again, sometimes it takes a few weeks for the ADT to take effect. Everyone is different……

The goal of ADT is to get testosterone levels below 50 ng/dL, and PSA to undetectable. (While on ADT, my testosterone level dropped to 3.0 ng/dL, and my PSA to < 0.008 ng/mL.)

If using Lupron (or Eligard or any of the leuprolides) they typically start with with a regimen of Casodex (aka Bicalutimide) in order to prevent the testosterone flare (spike) that you’re concerned about.

With Firmagon (or Orgovyx), the testosterone suppression is so quick, that the testosterone spike doesn’t occur. Then again, I’ve heard that Firmagon injections are a bit rougher than Lupron/Eligard. (The old saying of “pick your poison” comes to mind.)

—> what were the results of his biomarker (genomic) test?
—> what were the results of his genetic (germline) test?
—> what were the results of his PSMA PET scan?

For me, prostate cancer wasn’t so much about trusting the doctors and hospitals as it was about self-advocacy and shared decision-making. That way, I could be confident in knowing what they were recommending OR I could make my own recommendations for treatment.

At this point in his journey, your husband (and you) should know enough about the nuances of his disease that you should have a good idea of what’s next, treatments, side-effects, etc.

Good luck!

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I'm stage 4 with cancer cells in my lymph nodes. After a prostatectomy 20 years ago, then a reappearance of cancer cells five years ago, followed by off and on cyberknife radiation until recently--when I was told further radiation likely would damage tissue--I was transferred to Georgetown University Hospital's oncology department, where I'm in systemic doublet therapy, with a Lupron injection every three months and a daily tablet of Erleada. My question is whether it makes sense for me to start Pluvicto now or wait until the doublet therapy starts to lose its effectiveness. Of course I'll ask my oncologist this question, but I thought it wouldn't hurt to get input from some of you. Thanks and God bless.

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@nparadisum

I'm stage 4 with cancer cells in my lymph nodes. After a prostatectomy 20 years ago, then a reappearance of cancer cells five years ago, followed by off and on cyberknife radiation until recently--when I was told further radiation likely would damage tissue--I was transferred to Georgetown University Hospital's oncology department, where I'm in systemic doublet therapy, with a Lupron injection every three months and a daily tablet of Erleada. My question is whether it makes sense for me to start Pluvicto now or wait until the doublet therapy starts to lose its effectiveness. Of course I'll ask my oncologist this question, but I thought it wouldn't hurt to get input from some of you. Thanks and God bless.

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They usually do not do Pluvicto until You have noticeable metastasis that can be treated. If your current treatment is keeping your PSA down and you can’t see metastasis in a PSMA pet scan, then you will probably not be a Candidate for Pluvicto.

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@jeffmarc

They usually do not do Pluvicto until You have noticeable metastasis that can be treated. If your current treatment is keeping your PSA down and you can’t see metastasis in a PSMA pet scan, then you will probably not be a Candidate for Pluvicto.

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Right....that's where we're at...first diagnosis was stage 4 metastatic in lungs, bones, nodes... really all over!
PSA has gone down a bit but that's just from diet and supplements or just a lucky day. I think the last time was around 200 or 250 from 300. So still not good.
We'll see about another blood test next week and scans and second oncology appointment!

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