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 smc24 @smc24

I need to correct @jeffmarc's comment. Pluvicto is a targeted therapy that binds to prostate-specific membrane antigen (PSMA), a protein found on prostate cancer cells.
Once bound, the radioactive component of Pluvicto releases radiation that kills the cancer cells, specially lutetium 177Lu, a highly radioactive compound. The treatment delivers gamma radiation that escapes your body and can reach others around you, especially within the first 3 days after each treatment.
I had a full 6 treatments of Pluvicto in 2021-22 as a clinical trial patient for Novartis Pharmaceutical. It was approved in the US shortly afterwards. In mid 2024, my cancer became active, again and I am one a just a handful of patients anywhere in the world repeating the 6 treatment program, completely at my own risk.
I've had numerous targeted beam radiation treatments including the prostate bed and countless PET CT scans and a recent SPECT scan. And, full chemo twice. Yes, lots of radiation. If you have reached the point of receiving Pluvicto, the LEAST of your concerns should be your life radiation accumulation. Yes, too much radiation can effect bone marrow and cause other issues, but those choices might already be out of your necessary, and life saving decision making moving forward. I'm 73, battling cancer for 10 years and so far, I'm doing remarkable well with none of the excessive radiation side effects. Good luck. Don't give up, do what you have to do.

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My husband is starting Pluvicto soon and do you have any suggestions regarding diet and anything else to get him through it? I have also asked for resources to educate myself on how much I should worry about the exposure at my age of 81/ Thanks so much and sending love, light and healing ,Lynne

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Profile picture for smc24 @smc24

I need to correct @jeffmarc's comment. Pluvicto is a targeted therapy that binds to prostate-specific membrane antigen (PSMA), a protein found on prostate cancer cells.
Once bound, the radioactive component of Pluvicto releases radiation that kills the cancer cells, specially lutetium 177Lu, a highly radioactive compound. The treatment delivers gamma radiation that escapes your body and can reach others around you, especially within the first 3 days after each treatment.
I had a full 6 treatments of Pluvicto in 2021-22 as a clinical trial patient for Novartis Pharmaceutical. It was approved in the US shortly afterwards. In mid 2024, my cancer became active, again and I am one a just a handful of patients anywhere in the world repeating the 6 treatment program, completely at my own risk.
I've had numerous targeted beam radiation treatments including the prostate bed and countless PET CT scans and a recent SPECT scan. And, full chemo twice. Yes, lots of radiation. If you have reached the point of receiving Pluvicto, the LEAST of your concerns should be your life radiation accumulation. Yes, too much radiation can effect bone marrow and cause other issues, but those choices might already be out of your necessary, and life saving decision making moving forward. I'm 73, battling cancer for 10 years and so far, I'm doing remarkable well with none of the excessive radiation side effects. Good luck. Don't give up, do what you have to do.

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What’s is missed here is there is a major difference between the radiation you get from something liked Pluvicto and getting the maximum radiation from prostate bed treatment.

It is just not affecting the body of the same as getting more radiation to the prostate bed After having the maximum.

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Smc24, I think you really distilled this sometimes irrational fear of radiation to that single point; death could be the side effect of NOT having it!
What many don’t get is that it is the full body, non-targeted radiation you get from suntanning and frequent air travel (flying at close to 40,000ft) that can cause issues as well. The effects are insidious and we really have no long term studies to show what cancers - other than skin cancer - might be in the offing.

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I need to correct @jeffmarc's comment. Pluvicto is a targeted therapy that binds to prostate-specific membrane antigen (PSMA), a protein found on prostate cancer cells.
Once bound, the radioactive component of Pluvicto releases radiation that kills the cancer cells, specially lutetium 177Lu, a highly radioactive compound. The treatment delivers gamma radiation that escapes your body and can reach others around you, especially within the first 3 days after each treatment.
I had a full 6 treatments of Pluvicto in 2021-22 as a clinical trial patient for Novartis Pharmaceutical. It was approved in the US shortly afterwards. In mid 2024, my cancer became active, again and I am one a just a handful of patients anywhere in the world repeating the 6 treatment program, completely at my own risk.
I've had numerous targeted beam radiation treatments including the prostate bed and countless PET CT scans and a recent SPECT scan. And, full chemo twice. Yes, lots of radiation. If you have reached the point of receiving Pluvicto, the LEAST of your concerns should be your life radiation accumulation. Yes, too much radiation can effect bone marrow and cause other issues, but those choices might already be out of your necessary, and life saving decision making moving forward. I'm 73, battling cancer for 10 years and so far, I'm doing remarkable well with none of the excessive radiation side effects. Good luck. Don't give up, do what you have to do.

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Profile picture for redroadtraveler @redroadtraveler

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.

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At 80 I did 2 chemo sessions after Xtandi Radium 223 etc It killed most of the C in my spinal bones

I did react and go fluid in my lungs Prednisone for 6 weeks to clear

I would do it again as it killed much

I have C in T 10 and L1 On Abiraterone now

Going for PSMA PET scan to qualify for LU 177

Why not try a few times Get another year of fun

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Profile picture for redroadtraveler @redroadtraveler

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.

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Redroadtraveler, you are an inspiration…a peaceful journey to you, my friend.
Phil

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Profile picture for redroadtraveler @redroadtraveler

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

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Hi robert, Can pluvicto be infused with a butterfly needle?

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Profile picture for sillyoyster @sillyoyster

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

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I’m sorry, I have no idea. Maybe somebody else can help.

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Profile picture for jeff Marchi @jeffmarc

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

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

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Profile picture for sillyoyster @sillyoyster

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?

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

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