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.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for eugenelapietra1 @eugenelapietra1

Hi Blane, Have someone drive you to your treatments and have them stay with you and take notes. Eat all your favorite junk foods. You do not want to lose weight. Don't let any negative BS enter your space. Shut the news off and watch comedies or listen to your music. If you have a pet keep them with you. You may or may not have some side effects, don't worry they'll pass quickly. This treatment is so much easier than chemo or radiation.You'll be happy you did it!!!Good luck, Gene

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Keeping your pet close after Pluvicto would not be a good thing for your pet. It could cause cancer in them. You could wait 3 days To be close to the pet but the half life of Pluvicto is almost 7 days. It will be safer for you to keep your pet away for that amount of time.

This treatment is definitely not easier than radiation for the vast majority of people. I know for myself after 7+ weeks of radiation I had no side effects at all. Some people on Pluvicto cannot even have more than one treatment because their body just rebels heavily. Almost everybody on pluvicto Has dry mouth that makes it a difficult to eat without extra liquid. Serious fatigue is frequently a common problem with Pluvicto treatments, Not something most people have with radiation.

Eating junk food is never a good idea, It’s terrible for your system. There’s no reason you can’t bulk up eating A lot of Mediterranean style food. That’s a healthy diet you can eat a lot of.

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Profile picture for blane6 @blane6

Hello. I am getting ready to go through this treatment. Amy information and advise is appreciated.

Thank you
Blane6

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Hi Blane, Have someone drive you to your treatments and have them stay with you and take notes. Eat all your favorite junk foods. You do not want to lose weight. Don't let any negative BS enter your space. Shut the news off and watch comedies or listen to your music. If you have a pet keep them with you. You may or may not have some side effects, don't worry they'll pass quickly. This treatment is so much easier than chemo or radiation.You'll be happy you did it!!!Good luck, Gene

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Profile picture for blane6 @blane6

Hello. I am getting ready to go through this treatment. Amy information and advise is appreciated.

Thank you
Blane6

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Pray...... Think Positive..... The odds are in your favor.......You'll do Great!!! I've not felt this GOOD in over 20 years !!! Focus in on why you want to live!!!

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Profile picture for eugenelapietra1 @eugenelapietra1

76 years old in the same boat your dads in. Treatment #1 not bad at all, treatment #2 a little rough, Treatment #3 a total nightmare, Treatment #5 I didn't think I was going to survive. I don"t have a choice I'll take Treatment #5 and pray..........The rub is , everyone may have a different experience so I suggest gathering more testimonials . Pluvicto with all its unknowns is still the only game in town. If you decide to go through with the treatments you can contact me and I'll share with you some tips on how to make your dads trip easier. God Bless ,Gene

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Hello. I am getting ready to go through this treatment. Amy information and advise is appreciated.

Thank you
Blane6

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Profile picture for stup1dwaz @stup1dwaz

I'm 83, had prostate removed on 2001, been on hormone therapy since then, also immune therapy, Xteva and now Pluvicto. I've had 3 injections with the only noticeable side effect was a dry mouth for about a week. After the 4 th injection the dry mouth has persisted for 3 weeks, not bad but taste is off a bit. I've been hiking between 5-6 miles a couple of times a week, kayaking and biking 20 miles.Somewhat fatigued but still able to participate. I read that the dry mouth could persist for awhile or even become permanent. I've been very fortunate my PSA went from 8 to .05 after 3 injections. Stopped the Xtandi after the 3 injection and next week will see what blood levels are. Since stopping Xtandi BP has dropped, hope to get off some BP meds.

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Staying on an ARSI can be very important. Xtandi Does cause fatigue for a lot of people, Nubeqa (Darolutamide) On the other hand, doesn’t normally cause fatigue and also doesn’t pass the blood brain barrier so it doesn’t cause brain fog,

You should ask your doctor about getting on Nubeqa, It can be important for a long-term progression free survival.

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Profile picture for stup1dwaz @stup1dwaz

I'm 83, had prostate removed on 2001, been on hormone therapy since then, also immune therapy, Xteva and now Pluvicto. I've had 3 injections with the only noticeable side effect was a dry mouth for about a week. After the 4 th injection the dry mouth has persisted for 3 weeks, not bad but taste is off a bit. I've been hiking between 5-6 miles a couple of times a week, kayaking and biking 20 miles.Somewhat fatigued but still able to participate. I read that the dry mouth could persist for awhile or even become permanent. I've been very fortunate my PSA went from 8 to .05 after 3 injections. Stopped the Xtandi after the 3 injection and next week will see what blood levels are. Since stopping Xtandi BP has dropped, hope to get off some BP meds.

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The dry mouth side effect can persist for a while and can even be permanent, though for my husband it isn't severe. He finished Pluvicto in August of 2024.

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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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I'm 83, had prostate removed on 2001, been on hormone therapy since then, also immune therapy, Xteva and now Pluvicto. I've had 3 injections with the only noticeable side effect was a dry mouth for about a week. After the 4 th injection the dry mouth has persisted for 3 weeks, not bad but taste is off a bit. I've been hiking between 5-6 miles a couple of times a week, kayaking and biking 20 miles.Somewhat fatigued but still able to participate. I read that the dry mouth could persist for awhile or even become permanent. I've been very fortunate my PSA went from 8 to .05 after 3 injections. Stopped the Xtandi after the 3 injection and next week will see what blood levels are. Since stopping Xtandi BP has dropped, hope to get off some BP meds.

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Profile picture for scalecraft @scalecraft

Day 8? Can't even think anymore.
The pain has stabilized out to almost "undetectable".
However, last 2-3 days the fatigue has been EXTREME!.
Sleep almost all day, and all night.
When I do arise, VERY dizzy and wobbly.
Can't make it round trip to mailbox.
Used an old trick told me by my GP almost 40 years ago, gargle and swish with Hydrogen Peroxide. Two days, twice a day, took most of the coating off my tongue, and I have a lot of my taste back.

Gonna try going out today. No Oxycodone (test to see if that is in issue with fatigue) but 100mg Provigil, which did (surprisingly) NOTHING Sunday morning.

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Hi just reading your posts and wanted to find out how you are doing? Did you do genetic testing before the pluvicto? What are your numbers now? Side effects? How are your kidneys? My dad is pursueing pluvicto becasue he has hormon resistant PC. PSA is 111 last check - metastisized to bones and spine. He has no pain now. We are surmising we should start treatment before the pain begins while hes still feeling good. His blood work is great but he has always been anemic. Kidneys are stressed and will need to get into shape before we begin. Any input would be welcome from your experience

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Profile picture for newby82 @newby82

Have you heard of any that have had third stage kidney disease when starting treatment and will this take out your kidney's? How long did the side effects last? We are contemplating immunotherapy since Dad has a hard time with the thought of quarantine for three days and unsure he would be able to handle it.

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You do not need to quarantine for three days. Yes, you should sleep in a separate bed and should stay 3 feet away from other people, but that doesn’t mean you can’t be around other people. Some people overdo it and it makes little sense.

Check out this link about Pluvicto and kidney disease, it only refers to the package insert that comes along with Pluvicto Treatment
https://www.drugs.com/pro/pluvicto.html#:~:text=5.3%20Renal%20Toxicity,Dosage%20and%20Administration%20(2.4)%5D.
It warns about kidney problems

Yes, Pluvicto can potentially increase damage to the kidneys, especially in patients who already have kidney disease. The kidneys are a known site for toxicity because they temporarily retain some of the radioactive medication during treatment.

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Profile picture for newby82 @newby82

Have you heard of any that have had third stage kidney disease when starting treatment and will this take out your kidney's? How long did the side effects last? We are contemplating immunotherapy since Dad has a hard time with the thought of quarantine for three days and unsure he would be able to handle it.

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Men receiving Pluvicto infusions do not have to quarantine for three days. They just need to keep their distance but don't have to isolate themselves.

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