Can anyone share their experience with Pluvicto?

Based on my experience after receiving my 10th of 12 treatments (yes, that two rounds over 4 years), the first 6 being the original clinical trial, here are my comments.
I get a little bit of radiation sickness the day after with milder symptoms the following few days. A mild headache, upset stomach and a little fatigue. Mostly annoying. A very mild diet of mostly chicken noodle soup and mashed potatoes is my comfort food. I take pepsid (not Pepsi) to reduce stomach acid starting the day before and as needed for several days after each treatment. And, I keep Tums and some antinausea tables (left over from my chemo) nearby to settle that jumpy stomach. It really hasn't been too bad at all.
The Pluvicto literature describes the radiation precautions based on it's half life of about 6-7 days. It's 3 days of not sleeping beside or spending hours within a few feet of someone including pets, babies, pregnant women, etc. But, you can be in the same room while staying a reasonable distance apart. The radiation is expelled mostly through body fluid; urine, saliva, sweat, exhaling vapor, etc. I store and wash my close separately for a week or so, don't share food, towels, etc. I carry a pocket size geiger counter (from my clinical trial days) and can see exactly how quickly the radiation value declines, comparing them to published charts. In 4 or 5 days, I return to a normal life being a little cautious. Drink lots of fluids to flush it out of your bladder and colon. You don't want that radiation hanging around there too long.
I could go on, but in reality, FOR ME, it's not a big deal. Listen to to radiation specialists and use common sense. The more you educate yourself, the easier and less fearful it will be. Just do it.

I started this journey 2 years ago and have had 6 rounds of chemo and have been on nebqua and lupron for this time. Now it seems it quit working so I am now taking once a day orgovyx, nubqua, and am going to start pluvicto next week. I know what chemo was like for a few days after a treatment, but wonder what to expect with an infusion of pluvicto every 6 weeks. Anyone had this treatment, and what to ecpect?

@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

@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

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.