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 gtgitha @gtgitha

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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@gtgitha
Greetings. I, also, am the wife of a pig-headed man. He was diagnosed Grade 5, Gleason score of 9 last December, with 5 initial mets sites to bones. He takes Nubeqa BID and gets injections of Lupron every 3 months. He did chemo (Taxotere, ending in May), and radiation on the prostate with concentrated radiation to 2 new bone sites - that grew during chemotherapy - in September. Good results from radiation overall, but 2 new sites popped up; next scan in April - at which time Pluvicto is the choice, if there are additional sites. That is why I am beginning earnest research now. I am a retired ER nurse as well, and very much appreciate your post!
Hope you are well and wishing you peace - Mary

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Some people react too strongly to Pluvicto and can’t continue with it.

Other people need to have a lower dose or have more time between Infusions.

You need to talk to your radiation oncologist about this problem. It is a very strong reaction and unusual. Get the doctor’s opinion on what to do next.

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I'm 74 and have had stage 4 gleason 9 for 7+ years, and am on hormone therapy with a total of 45+ days of radiation. So far God's blessed me with a great oncologist and a great radiologist. Each time the identified areas of metastasized get addressed.
now I started my PLUVICTO treatment and only 14 days out and I still feel like crap. Max fatigue. Almost like my muscles and bones don't want to operate anymore. I can go for a daily 2 mile walk and I'm wiped out through 1/2 of the day. The last 4 days seems to have impacted my bowel movement as I have had to use the bathroom about every 30-40 minutes. Stools have been very very muddy (sorry to share). I'm getting about an average of 5 hrs sleep a nite and sruggle to fall asleep (if a all) again.
Nausea that just won't go away. I actually believe the anti nausea meds makes me feel worse. My next treatment is around Dec 21 (Merry Christmas!) and maybe i'll get a surprise gift.

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Profile picture for jimw77 @jimw77

@michaelbryan6998
Michael, I hope that you've now had that fourth round of Pluvicto and the PSMA PET scan is now scheduled. I'm 77 years young, extensive mets, heart and other comorbidities, but taking it all as it comes and making the most of each day. Keep on keeping on.

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@jimw77

thank you for your good thoughts. Pluvicto is on hold due to other medical issues, and yes, one day at a time and it all belongs to Him.

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Profile picture for michaelbryan6998 @michaelbryan6998

79 years young with metastacized Prostate Cancer in my ribs & backbone. I also have IPF. I have been dealing with the cancer for 4 plus years. Chemo, ADT, direct radiation to the prostate, and now I"ve had two rounds of Pluvicto. Side effects: tiredness (to add to the effect from all the meds), dry mouth, increasing discomfort in my bowels, and a gnawing question about whether its working. My doc won't do another PSMA scan till after the 4th treatment which is frustrating - only way to know if its working or not. No pain from injection - hassle keeping distance from my wife and sleeping in separate rooms ( we like each other) but the tiredness increases and I wonder about other side effects. Thought it good news (at least for the drug company) that they have now approved it for use without chemo or ADT - the idea is great and hope its working and killing the cancer cells. Choose life, fight, fight, fight.

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@michaelbryan6998
Michael, I hope that you've now had that fourth round of Pluvicto and the PSMA PET scan is now scheduled. I'm 77 years young, extensive mets, heart and other comorbidities, but taking it all as it comes and making the most of each day. Keep on keeping on.

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Profile picture for shz @shz

@jeffmarc
What if you have PTen and TP53 as well as ATM and BRCA?

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@shz
Got to admit, that’s a lot of genetic issues.

Are all 4 really found in one person?

I would not even try to make a guess.

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Profile picture for Jeff Marchi @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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@jeffmarc
What if you have PTen and TP53 as well as ATM and BRCA?

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Radiation was discovered 130 years ago and the scientists fully understand the positive and negative effects on animals and plants. You are correct, no clinical trials was performed specifically on "pets". Why would an institution spend hundres of millions of dollars to do so? We understand radiation. But, a pet is an animal and it's been know for a century the harm LU-177 can have.
I was one of the original Pluvicto clinical trial patients and hold multiple science degrees with 50 years of real life experience. You can do whatever you want, but raiation can be very helpful and deadly dangerous. It's basic physics, not "misinformation".

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Profile picture for smc24 @smc24

To eugenelapietrial:
I believe your basic knowledge of the science and understanding of radiation is way off. Pluvicto uses beta particle. Although the exchange of bodily fluids should avoided for a predetermined time after a Pluvicto treatment, this includes exhaling water vapor, saliva, urine, sweat, etc. But, as with all radioactive particles, the particles of beta, gamma, etc. travels through the atmosphere. That's the basics of a sunburn (UV radiation), a medical x-ray or CT, scan, the atomic bomb, etc. I carry a small geiger counter with me after each Pluvicto treatment and can easily see and hear the radiation levels being emitted from my body. No bodily fluids required. The radioactive particles are emitted through the skin.

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Again I ask you to show me the clinical trails that mention pets, there are none. thats the science stop passing out misinformation

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Profile picture for eugenelapietra1 @eugenelapietra1

Ok Jeff, Please cite which clinical trail says that. You'd have to share your bodily fluids with your pet to transfer any radio active material to your pets .check that out.On this forum the info we share must be accurate.

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To eugenelapietrial:
I believe your basic knowledge of the science and understanding of radiation is way off. Pluvicto uses beta particle. Although the exchange of bodily fluids should avoided for a predetermined time after a Pluvicto treatment, this includes exhaling water vapor, saliva, urine, sweat, etc. But, as with all radioactive particles, the particles of beta, gamma, etc. travels through the atmosphere. That's the basics of a sunburn (UV radiation), a medical x-ray or CT, scan, the atomic bomb, etc. I carry a small geiger counter with me after each Pluvicto treatment and can easily see and hear the radiation levels being emitted from my body. No bodily fluids required. The radioactive particles are emitted through the skin.

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