Can anyone share their experience with Pluvicto?

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

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.

My dad - 80 yr old just started pluvicto. He has had one treatment, next one is in October.
You mention treatment gets rougher, may I ask what we can expect?
Also- did your psa go up anytime after treatment? His is up from 100 to 400.
Worried daughter - I appreciate anything information you are willing to share.

My dad - 80 yr old just started pluvicto. He has had one treatment, next one is in October.
You mention treatment gets rougher, may I ask what we can expect?
Also- did your psa go up anytime after treatment? His is up from 100 to 400.
Worried daughter - I appreciate anything information you are willing to share.

Yes.

I have now completed my six rounds of Pluvicto. More Pluvicto treatments beyond six rounds puts us right back into unknown, experimental territory.

Pluvicto seems to be the current "final frontier" of treatments available from the allopathic world. As far as I know, once we have completed the initial six rounds that's the end of any FDA approved treatments. We are on our own at that point. My experience with Pluvicto has been very good. All the oncologist can offer at this point is simply continuing to monitor my condition.

If it begins to get significantly worse I will be lobbying for me to jump into the experimental world of additional Pluvicto treatments.

I wish you good luck with your additional Pluvicto treatments.

Redroadtraveler,
This what is said. Norvartis Pharmaceutical completed a clinical trial (PSMA-617 Lu-177) and was approved (USFDA March 23, 2022) for one round of 6 treatments. It is now called Pluvicto. There is plenty of supporting historical and current data on the trial(s) and currect usage. After all, it was a clinical trial. It is now an approved option for metastatic castration-resistant prostate cancer. BUT, there is no data that I have found regarding REPEATING THE ENTIRE 6 ROUNDS, #7 through #12) which I just started this Sept. It was not designed for, tested or approved beyond one tound of 6 treatments. I was one of the ORIGINAL clinical trial patients 2021-2022, so I'm minutely aware of the existing data, as I am included in the findings. When rounds #7 through #12 are completed in April 2025, perhaps that new data will be released.

How much do you trust your oncologist?

He/she is just totally wrong in telling you the FDA doesn't have enough data to support it's use.

It USED to be that you had to have been treated with chemotherapy before qualifying for Pluvicto. That is no longer true. I just had my fifth Pluvicto treatment and I elected to not have chemotherapy.

There seems to be a hierarchy or tier to all the various types of cancer treatments available. A person newly diagnosed would not likely start out with Pluvicto. It's quite a ways down the line after several other, less drastic, avenues have been tried and have run their course.

It sounds like you might benefit from a second opinion from a different, more knowledgeable oncologist.

I was a clinical trial patient for Pluvicto Nov. 2021-May 2022, U. Of Chicago, standard 6 treatment 6 weeks apart. It was a last resort having been through most all standard protocol of surgeries, drugs, radiation, etc. I am stage 4 metastatic castration-resistant. At that time, data showed an typical 11-15 months life extension. My PSA dropped to almost undetectable, PET scans showed many tumors disappeared and others greatly reduced in size. I had a day or two of feeling mildly sick after each treatment, but very, very tolerable. It definitely kicked the can down the road.
Sept. 2024, PSA has shown slight rise and tumors are growing again. Having ruled out other options for one reason or another, many of which I have had, I have started the Pluvicto 6 treatments for the second time, completing the first (#7) three weeks ago. I follow the same post treatment isolation requirements due to the radiation. I had a week of mild upset stomach and annoying headache this time. In three weeks after the 2nd treatment (#8), I"ll have another PET scan to see how the tumors are doing. The PSA has stablized extremely low.
Thus, FOR ME, it saved my life once, so the doctors and I see this as the best option, and I'm doing it again. There is no published data on a patient going through these treatments twice.
Since Pluvicto finds and treats virtually every prostate cancer cell no mater were it is located in the body, I consider it an excellent option for a metastatic patient.

I was a clinical trial patient for Pluvicto Nov. 2021-May 2022, U. Of Chicago, standard 6 treatment 6 weeks apart. It was a last resort having been through most all standard protocol of surgeries, drugs, radiation, etc. I am stage 4 metastatic castration-resistant. At that time, data showed an typical 11-15 months life extension. My PSA dropped to almost undetectable, PET scans showed many tumors disappeared and others greatly reduced in size. I had a day or two of feeling mildly sick after each treatment, but very, very tolerable. It definitely kicked the can down the road.
Sept. 2024, PSA has shown slight rise and tumors are growing again. Having ruled out other options for one reason or another, many of which I have had, I have started the Pluvicto 6 treatments for the second time, completing the first (#7) three weeks ago. I follow the same post treatment isolation requirements due to the radiation. I had a week of mild upset stomach and annoying headache this time. In three weeks after the 2nd treatment (#8), I"ll have another PET scan to see how the tumors are doing. The PSA has stablized extremely low.
Thus, FOR ME, it saved my life once, so the doctors and I see this as the best option, and I'm doing it again. There is no published data on a patient going through these treatments twice.
Since Pluvicto finds and treats virtually every prostate cancer cell no mater were it is located in the body, I consider it an excellent option for a metastatic patient.