1. < Prostate Cancer

Can anyone share their experience with Pluvicto?

Posted by vcash @vcash, Apr 22, 2024

My 85 year old dad has prostate cancer that has metastasized to his bones. Zytiga is no longer effective. He is considering Pluvicto. I would appreciate input from those who have used Pluvicto.

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kenshabby | @kenshabby | May 28 12:02pm
In reply to @redroadtraveler "I am 80 years old with stage IV prostate cancer which has metasasized throughout my bones...." + (show)
@redroadtraveler

I am 80 years old with stage IV prostate cancer which has metasasized throughout my bones. Been on various immunotherapy treatments for 3-4 years (most recent being Keytruda). All of them have run their course and are no longer effective.

I tried for several months to get the Pluvicto treatment but they didn't do it due to the FDA saying a person had to have had chemotherapy first. I elected to NOT have chemotherapy as it made no sense to me to kill off everything and hope that the good comes back faster than the bad.

Very recently, the manufacturer began to question the necessity for chemotherapy prior to Pluvicto and I am one of the first people to get Pluvicto without having had chemotherapy.

Pluvicto treatment protocol is an IV injection every six weeks for a total of six times. It is a heavy duty radiation treatment but it is NOT chemotherapy. It targets the cancer cells instead of the shotgun approach of chemotherapy.

I am halfway through my Pluvicto treatment. I have had three injections and will get number four in a week.

You will get detailed scans prior to the treatment, and the doctor will monitor your blood work closely and see how you are tolerating treatment before giving you the next injection.

After the injection, they turn you loose when your radiation level is three at a distance of three feet.

We joke that I "glow in the dark" after the injection but there is a certain amount of truth in that. I wanted this treatment for myself, but was concerned about "collateral damage" of radiation to anyone else around me. The official guidelines tell you to maintain a three foot distance from everyone for three days, and for seven days from pregnant women and small children (and by extension small animals like cats or dogs).

Every radioactive substance has a half-life and decays over time. I purchased a dosimeter (Geiger counter) from Amazon for about $100 to monitor my actual condition rather than simply going by their guidelines.

My personal experience is that, for me, the guidelines are not strict enough. I do not want to cause collateral radiation damage to anyone else, so monitor my radiation level daily at three feet, one and a half feet, and right next to my skin.

My personal protocol is to isolate myself for one week. I am alone in the bedroom, reading, binge watching Netflix, etc., leaving only briefly to get something to eat or go to the bathroom.

During week two I loosen up a bit, allowing brief contact such as a hug or a handshake, but no prolonged contact.

By the end of two weeks from my injection, my personal radiation level is down to zero at my skin, so I no longer have any danger of giving collateral radiation damage to anyone. At that point I resume sleeping in the same bed with my wife and have no issues with personal contact with others.

Everyone reacts differently to different treatments. I have tolerated it reasonably well. The worst side effect has been serious constipation. Also a moderate increase in fatigue.

I would like to get another scan now, halfway through treatment, but insurance won't pay for it. I will get another scan when all treatments are done so I will at least have a before and after reading on how effective (or ineffective) it has been.

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Is your tumor MSI-H?

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proftom2 | @proftom2 | May 28 10:21am

Interesting Pluvicto/PSA encounter after shot #3. My PSA went flying from 7 to 12. Just like that my hope deflated awaiting arrival of my PSA depression. My oncologist recommended stoping Pluvicto, and go right to scans and XTANDi. After he consulted with my Radiation Oncologist, Nuclear Oncologist, and other Oncologist, he/we/they came to the conclusion this looks like a PSA Flare. PSA Flares happen, the recommendation for the docs was to take one more injection, wait two weeks, do a Pet-Scan, and Bone scan and take it from here. This works well for me.

Anyone else have a PSA Flare-up while on Pluvicto?

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2 replies
beavers | @beavers | May 20 7:33am
In reply to @jeffmarc "Be aware that 1/3 of people have really good results from Pluvicto, 1/3 Respond OK and..." + (show)
@jeffmarc

Be aware that 1/3 of people have really good results from Pluvicto, 1/3 Respond OK and 1/3 get nothing from it.

Pluvicto genetic issues
RB1, PTen, TP53 are Pluvicto resistant
ATM & BRCA work better with Pluvicto

Have you had a hereditary Test or a somatic test? It would be good to have both before having Pluvicto So you can see if you have a genetic conflict.

Some people have some major side effects from Pluvicto, most don’t. I have heard at least 5 people talk about their experience, In some cases they had to have more time between doses because of the side effects.

I saw a webinar where they discussed a person who lit up the Pet scan With metastasis from head to Legs. He had one Pluvicto Treatment and it almost cleared his pet scan, But his side effects were so bad that he could not take any more treatments

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Hi Jeff
I think that I am one of the lucky ones in the top 1/3.
I just completed infusion # 3 with minimal side effects,
My PSA has dropped like a rock, started at 78 dropped to 39 then to 12.
I am going to talk to my oncologist about pausing treatments 4,5, & 6 . Save some ammunition for went
the PSA goes back to 80.
The Best of Luck
Willis Beavers

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jeff Marchi | @jeffmarc | May 19 1:53pm

Be aware that 1/3 of people have really good results from Pluvicto, 1/3 Respond OK and 1/3 get nothing from it.

Pluvicto genetic issues
RB1, PTen, TP53 are Pluvicto resistant
ATM & BRCA work better with Pluvicto

Have you had a hereditary Test or a somatic test? It would be good to have both before having Pluvicto So you can see if you have a genetic conflict.

Some people have some major side effects from Pluvicto, most don’t. I have heard at least 5 people talk about their experience, In some cases they had to have more time between doses because of the side effects.

I saw a webinar where they discussed a person who lit up the Pet scan With metastasis from head to Legs. He had one Pluvicto Treatment and it almost cleared his pet scan, But his side effects were so bad that he could not take any more treatments

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2 replies
proftom2 | @proftom2 | May 19 1:02pm

I'm in year 5 of my Advanced Prostate Cancer. First 3.3 years my PSA was on a steady decline from 118-to-1.8. Since then its been on a steady rise now its 12.4. Started Pluvicto on January 27, just had my 3rd shot and my PSA went up again.
For me Pluvicto offered something hopeful. Is it working I don't know? I meet with my oncologist Wednesday all we'll go from there. My oncologist is fun, caring, a really good communicator. We discussed the pros and cons of Pluvcito going in. So, I am still minded about this treatment.

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michaelbryan6998 | @michaelbryan6998 | May 3 10:02am

79, been thru chemo, ADT,and now one Pluvicto treatment. I also have IPF (Idiopathic Pulmonary Fibrosis) and had no real 'reactions' to the first Pluvicto injection.........but as the six week interval progressed, my level of 'tiredness' and lack of energy increased almost daily. I am not bedridden, but my breathing has become more labored and I have diminished energy (which was low pre-Pluvicto). My doc cancelled my 2nd Pluvicto treatment which was scheduled for 2 May (yesterday) based on my symptoms, and we all agree I need to see Pulmonologist for tests on lungs - question is has the Pluvicto accelerated the growth of the fibrosis? Complicated for sure, but I'm optimistic overall.

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beavers | @beavers | May 2 1:26pm

I am 86 and have been fighting prostate cancer since 2014.
My PSA started out at 80 and 6 weeks after the 1st treatment of Pluvicto it was 40. This is the best result I have ever had. Sure, beats the hell out of chemo. I will have the results of the 2nd treatment on May 12.
My only side effect I have had is diarrhea or constatation (not at the same time) during the 1st week after the infusion.
I am now back out on the golf course playing twice a week.

Best Wishes
Willis Beavers

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jeff Marchi | @jeffmarc | May 2 11:18am
In reply to @soflada "Older gent here who has progressed through chemo, standard radiation, a variety of scans (MRI, PET,..." + (show)
@soflada

Older gent here who has progressed through chemo, standard radiation, a variety of scans (MRI, PET, etc) and I just have my first Pluvicto injection at the beginning of May '25. Looking for folks who might be able to shed light on how the Pluvicto injections have worked/not worked and what side effects you've had to work through. I'm on multiple opioids and a steroid to control pain—as long as I maintain the regimen, things seem reasonable. Lose track of where I am in the day and things go sideways rapidly.

Thanks

Jump to this post

You have to realize that Pluvicto is real successful for about 1/3 of people works OK for about 1/3 and it doesn’t work at all for 1/3 of people.

There are genetic issues, however. You want to make sure to get a hereditary genetic test as well as somatic genetic test to see if you have any of these genetic anomalies.

Pluvicto genetic issues
RB1, PTen, TP53 are Pluvicto resistant
ATM & BRCA work better with Pluvicto

Did you got a hereditary, genetic test. You can get the test free at the below site as long as you live in the United States. Don’t Pick the option for your doctor to be involved. They won’t send you the kit until they speak to your doctor. A geneticist will call you to discuss the results in abouft three weeks.

Prostatecancerpromise.org

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soflada | @soflada | May 2 9:58am

Older gent here who has progressed through chemo, standard radiation, a variety of scans (MRI, PET, etc) and I just have my first Pluvicto injection at the beginning of May '25. Looking for folks who might be able to shed light on how the Pluvicto injections have worked/not worked and what side effects you've had to work through. I'm on multiple opioids and a steroid to control pain—as long as I maintain the regimen, things seem reasonable. Lose track of where I am in the day and things go sideways rapidly.

Thanks

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1 reply
smc24 | @smc24 | Apr 11 12:32pm

I was a clinical trial patient in original 2021-22 (Norvartis Pharmaceutical PSMA 617 Lu177), now Pluvicto, trial. It worked wonders for me. Eight or so years of other treatments prior to 2021 kicked the problem down the road, but no longer worked. Side effects were much less than chemo and other treatments I've received. If your situation is "to that stage" and you meet the requirements, I recommend it. Stay in touch

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