Can anyone share their experience with Pluvicto?

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.

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.

@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.

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.

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

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

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.