Can anyone share their experience with Pluvicto?

I'm 81 years old. Have been through all the FDA approved protocols except chemotherapy. It was my choice to not undergo chemotherapy. Everything does it's part in delaying the inevitable.

I am the poster boy for the Pluvicto treatment, having gone through all six treatments with minimal side effects and maximum benefits.

In my opinion the hazmat suit is overkill. I DO however highly recommend you get a dosimeter (about $100 from Amazon) and daily monitor your readings at RMS length and t skin level. We are an hour and a half drive home after the treatment and felt it worked ok to just sit the patient as fr away from the driver as possible for the drive home.

Although for me the Pluvicto treatment I would count as a success, at this point I have lost the battle. I am on hospice care on my last legs awaiting my final journey.
Unfortunately there is no cure. Every treatment, no matter how good, is simply a delay. In my case I was able to delay about five years and maximize my quality of life during that time.

Hello Colleen,

I must have stirred up the hornets nest with the Mayo administration with my comments about my experience with Pluvicto, Let me say that I think everyone is entitled to make their own decisions regarding their heath care. If a person chooses to turn over all responsibility to the allopathic doctors and do everything and anything they tell you without question that is their right and prerogative.

I am not one of those people.

I have had Stage IV prostate cancer for several years which has metastasized throughout my bones. I have an excellent oncologist. It is a team effort, but I reserve the final right to accept or decline what he has to offer. So far I have accepted everything he said except one - chemotherapy. I declined chemotherapy because it made no sense to me to kill off the good and the bad and hope that the good comes back faster than the bad. I have been through many different treatments. Each of them worked for a while, then ran their course and became relatively ineffective, the last one being Keytruda.

Then along came a new cutting edge treatment called Pluvicto. When I found out about it I was totally in favor of it because, unlike chemotherapy, it targeted the cancer cells and didn't go after the non-cancerous cells. I lobbied my Oncologist for several months to get this treatment but treatment was denied because (at that time) the FDA was requiring a person to have had chemotherapy in order to qualify. That requirement was recently dropped so I finally got the treatment I was seeking.

I got a dosimeter to monitor my radiation levels because I was very concerned about my "glow in the dark" status possibly causing what I call "collateral damage" to caregivers, family, and friends. When I get my Pluvicto injection they keep me in the hospital fifteen to thirty minutes afterwards to monitor me to make sure I am not having any adverse effects and to check my radiation reading. I am turned loose when the radiation reading at three feet is around 3 millirems per hour.

Colleen, I certainly appreciate your obligation to reiterate the current protocol as all that is needed, but my personal experience has led me to a different conclusion.

Current protocol says to isolate yourself for three days and not allow anyone closer than three feet (seven days for small children and pregnant women), and advises you to sleep in a separate room for that three days. The object of course being to limit any collateral damage to others. But we are told that after this three day period we can begin to resume what passes for a "normal" life when you are fighting cancer. You can stop isolating yourself. You can sleep with your spouse. The time for collateral damage has passed.

My personal protocol is to isolate myself for one week, then allow limited contact for the second week - being with a few people is ok, brief hugs or handshakes are ok, but no extended contact and no sleeping with my wife yet.

Let me explain how I came to that conclusion.

I am now five days from my last Pluvicto infusion, not three. My current radiation readings at day five are 0.8 at arms length (about three feet), 2.0 at a one foot distance, and 3.8 at my body. The effect of radiation exposure is cumulative in the body to anyone exposed to my radiation. The radiation does not REMAIN in their body but the effects of the exposure lingers. Annual cumulative exposure that is supposedly safe is 100 millirems for a person in the general public.

The official protocol says to isolate yourself for three days, but you are good to go after that. You can resume sleeping with your spouse. You can sit on the couch and watch a Netflix movie together for two hours.

Let's examine that in detail.

If my spouse and I sit at opposite ends of the couch for two hours watching a Netflix movie five days after my Pluvicto treatment she receives 2 x .8 = 1.6 millirems of radiation exposure. That's OK. If we were to sit a foot apart, not touching, she would receive 2 x 2.0 = 4 millirems of radiation exposure. Not good, as we are advised to not let anyone get more than 3 millirems a day. If we were to sit next to each other, touching and snuggling and cuddling she would receive 2 x 3.5 = 7 millirems of radiation exposure. Not good at all.

And it gets much worse when we examine sleeping in the same bed together for, say, eight hours a night. If we each cling to our respective side of the bed to keep from falling out we are about three feet apart. In that case she would be exposed to 8 x .8 = 6.4 millirems of radiation. Not good. If we were a foot apart but not touching she would receive 8 x 2.0 = 16 millirems of radiation exposure. If we were actually touching it would be 8 x 3.8 = 30.4 millirems or almost one third of the safe annual accumulated radiation exposure. Not good at all.

We are told that distance and time are "our friends" in this adventure. The further away a person is from the Pluvicto patient the less exposure. That is our "distance" friend. Every day that goes by the half life process continues and the radiation levels decrease. That is our "time" friend.

Colleen, I very much look forward to your reply and if my analysis as above is in any way mistaken I want you to correct my errors, for my understanding and the understanding of all Pluvicto patients who are following this thread.

Robert

Thanks Jeff. Do you know if Pluvicto can be delivered through a butterfly needle? My veins shrank due to the chemo.

Many people who have had that radiation are also getting Pluvicto. It is an infusion so there is no problem, it’s not radiation.

I had radiation to my prostate bed two years after surgery. It gave me my lifetime total radiation exposure. Won't pluvicto add to this amount? Would pluvicto be safe for me?

@vcash, you may also be interested in these related discussions:
- Anyone on Pluvicto? Looking for a support team
https://connect.mayoclinic.org/discussion/anyone-on-pluvicto/
- Anyone on Pluvicto (Lu 177), a new drug for prostate cancer?
https://connect.mayoclinic.org/discussion/any-one-on-pluvecto-a-relatively-new-drug/
See all Pluvicto discussions here https://connect.mayoclinic.org/group/prostate-cancer/

I am the poster boy for the Pluvicto treatment, having gone through all six treatments with minimal side effects and maximum benefits.

In my opinion the hazmat suit is overkill. I DO however highly recommend you get a dosimeter (about $100 from Amazon) and daily monitor your readings at RMS length and t skin level. We are an hour and a half drive home after the treatment and felt it worked ok to just sit the patient as fr away from the driver as possible for the drive home.

Although for me the Pluvicto treatment I would count as a success, at this point I have lost the battle. I am on hospice care on my last legs awaiting my final journey.
Unfortunately there is no cure. Every treatment, no matter how good, is simply a delay. In my case I was able to delay about five years and maximize my quality of life during that time.