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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Could have. All things are possible, but not probable.

Promise/Color, oh, you're good, not hereditary, don't have to inform kids.

1.5-2 years later,things don't seem to be following "the plan", onc sent sample off to a lab in Chicago.
Just so you might clearly understand, this was not a NEW biopsy sample, this was a bit of the ORIGINAL biopsy sample.
I suppose sitting in a refrigerated space all that time, the DNA in the sample could have transcended earthly bounds and become something else for the next test.

Nah.

Ooooops. New lab says it IS hereditary, and oh, by the way, it's ATM variant.....and then the onc changed "the plan" because those meds were not best for ATM.

Doesn't matter.
I don't trust medical professionals any more.

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Profile picture for scalecraft @scalecraft

Yeah, we'd researched that 1/3-1/3-1/3 bit. I am ATM.
Anymore, don't trust the science. Just go with the flow and see what happens.
Had two of those genetic tests. Two different results.

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You could have had two different somatic tests, Or you had a hereditary test and a somatic test. The cancer can cause the somatic DNA test to change, So you can have a different result after a test run some time after the previous test.

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Yeah, we'd researched that 1/3-1/3-1/3 bit. I am ATM.
Anymore, don't trust the science. Just go with the flow and see what happens.
Had two of those genetic tests. Two different results.

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I had to go back and review my nuclear protocols. Just to make sure. All those years on Nuke subs, at least we joked when we said "when they turn off the lights, I glow in the dark!"
Did you know with Pluvicto some folks promote Geiger counters and pocket dosimeters? A tad overkill with a short half-life.
Some folks say 30-day half-life, looking up Lutetium 177, half life is 6.65 days. Fits into 2-3 feet from children for 6-7 days.
Right now, with the majority of Docetaxel out of my system, been doing yard work. Been a long time.

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Profile picture for scalecraft @scalecraft

3+ years of fighting, failed chemos, sometimes horrible side effects, but tomorrow (Tuesday 24JUN25) I start Pluvicto.
Good to read some of this. The on-line side effects are....scary. The MD's keep adding to the list the closer we get to radioactivity.

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My husband had six Pluvicto infusions over most of 2024 and had none of the severe side effects that some people experience. He had some fatigue, a dry mouth from his saliva glands being affected by the treatment, and his appetite for food decreased in that most things just didn't appeal to him. His last Pluvicto infusion was in August 2024, and the only side effect remaining is dry mouth. Please don't worry about the radioactivity warnings; your doctor or treatment staff should tell you what is necessary, and it is much less than the overkill that some men do. No need to buy a Geiger counter or totally isolate yourself for days! Congratulations on starting Pluvicto, and good luck to you.

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Profile picture for beavers @beavers

What was your experience with Pluvicto?

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I’ve never had it. I’ve been to quite a few online conferences where they spend an hour on it. A few people over at Ancan.org Weekly advanced prostate cancer meetings, have had it and discuss side effects.

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Profile picture for Jeff Marchi @jeffmarc

Be aware that Pluvicto works really well for 33% of people OK for 33% of people and not at all for 33% of people.
If you have certain genetic issues, either hereditary or somatic, it can affect how well Pluvicto Works. You can ask for a hereditary and somatic test before doing Pluvicto To find out if you’ve got Genetic changes Due to the cancer.

If you have BRCA2 or ATM It seems to work better. If you have RB1, PTEN or TP53 They are Pluvicto resistant. I don’t know if these are the only genetic changes that cause Pluvicto to work much better or more poorly.

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What was your experience with Pluvicto?

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Be aware that Pluvicto works really well for 33% of people OK for 33% of people and not at all for 33% of people.
If you have certain genetic issues, either hereditary or somatic, it can affect how well Pluvicto Works. You can ask for a hereditary and somatic test before doing Pluvicto To find out if you’ve got Genetic changes Due to the cancer.

If you have BRCA2 or ATM It seems to work better. If you have RB1, PTEN or TP53 They are Pluvicto resistant. I don’t know if these are the only genetic changes that cause Pluvicto to work much better or more poorly.

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3+ years of fighting, failed chemos, sometimes horrible side effects, but tomorrow (Tuesday 24JUN25) I start Pluvicto.
Good to read some of this. The on-line side effects are....scary. The MD's keep adding to the list the closer we get to radioactivity.

REPLY
Profile picture for redroadtraveler @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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Hello. I’m the widow of a Pluvicto treated Awesome Godly Man! He was advised to have the chemo before the Pluvicto. Don’t tell my husband Not to do something. He was Always “game on,” when it came to his cancer treatment. Granted he was a 20+ year survivor of Melanoma-from 2002-do I need to tell you BRCA2. Anyway, he passed away 9/11/2024; yet retired from full time work 9/1/2024, although bedridden Hospice at that point. Driving and working until 8/9/2024. He completed his last Pluvicto #6 on 5/14/2024. He had absolutely no side effects from Pluvicto, especially when we realized Zofran caused constipation and told his team he wasn’t taking the Zofran. The “chemo wrecked me.”
There’s So much more to his story, but fight fight fight is what my husband chose to do and we supported him all the way. He was 68 years old. I was an Emergency nurse for 30+ years and a Hospice nurse 41 years ago. Every single human is different. Godspeed and blessings to all of you.

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