Can anyone share their experience with Pluvicto?

My guy had his first injection last Tuesday ! We stayed over nite he wore depends ! Slept in the same bed ! Went back the next day for the scan ! Went to the right places I was told ! His pain is 30% less than before ! Better than chemo no vomiting ! 😊

Colleen,

Thank you for your quick reply.

I never heard of the "Quantified Selfers". Sounds interesting to me though and I will look into it.

I appreciate your message of balance, especially to those of us who have become overwhelmed with just dealing with the cancer journey on a daily basis.

MY message's intent was NOT to advise everyone that they should do what I do, but to provide empirical data that goes beyond the officially published protocol for those who have the interest and ability to pursue it.

Thanks to the Mayo Clinic for all its good work and for providing this forum where those of us ON the cancer journey can share our experiences and learn from each other.

Robert

Robert, I completely agree that "everyone is entitled to make their own decisions regarding their heath care. " And I can clearly see that you take your health and monitoring it very seriously. And why wouldn't you, you've got skin in the game and you care about those around you. Your attention to detail and monitoring regimen remind me of the Quantified Self-ers, whose tagline is "self-knowledge through numbers." They've done a lot to advance science and health.

My message's intent was to provide balance. Prostate cancer is scary. Starting a new medication is un-nerving. Systemic radiation therapy with radioactive drugs (called radiopharmaceuticals or radionuclides) is not new to oncology. It is used to treat several types of cancer, including thyroid and bone, as well as prostate cancer. For years, patients have successfully completed treatment and kept themselves and their loved ones safe following instructions provided by their doctors.

For you, self-monitoring with a dosimeter is taking control for you and for family. I applaud that. For others, the extra step may seem overwhelming. I want to assure other members - patients and caregivers - that it is not required to purchase a dosimeter, especially for those on a budget.

And thanks to you sharing your data, they can adjust their quarantine times if they want to take extra precautions beyond the prescribed protocols. I bet many appreciate it.

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

@redroadtraveler, you're right that the use of PLUVICTO involves exposure to radioactivity. And I appreciate your diligence after treatment in keeping your distance from others and monitoring your radioactivity.

For all members taking Pluvicto or considering it, please note that it is not necessary to monitor with a dosimeter or geiger counter. With proper attention to instructions from your radiation oncologist you can keep yourself and your loved ones safe.

Read more about what to expect and precautions on Pluvicto's website here https://us.pluvicto.com/about-pluvicto/what-to-expect-when-taking-pluvicto

For more complete details, you can also download the pluvicto_patient_e.pdf Patient Information Insert.

Here's a relevant excerpt

After administration of PLUVICTO
For 2 days after the administration of PLUVICTO, drink plenty of water in order to remain hydrated and to urinate as often as possible to eliminate the radiopharmaceutical product from your body.

Because this medicine is radioactive, you will have to follow the instructions described below to minimize radiation exposure to others unless otherwise instructed by your nuclear medicine doctor.

Contact with others in your household, children, and/or pregnant women
 limit close contact (less than 1 meter) with:
o others in your household for 2 days
o children and pregnant women for 7 days;
 sleep in a separate bedroom from:
o others in your household for 3 days
o children for 7 days
o pregnant women for 15 days;
 avoid sexual activity for 7 days;
 use effective birth control throughout treatment with PLUVICTO and for 14 weeks after your last dose.

Use of toilets
Take special precautions to avoid contamination during the 2 days after treatment.
 You must always sit when using the toilet.
 It is essential that you use toilet paper every time you use the toilet.
 Always wash your hands well after using the toilet.
 Flush all wipes and/or toilet paper down the toilet immediately after use.
 Flush any tissues or any other items that contain bodily waste, such as blood, urine and feces
down the toilet. Items that cannot be flushed down the toilet, such as bandages, must be placed in separate plastic waste disposal bags (according to “Waste disposal recommendations” below).

Showering and laundry
Take a shower every day for at least the first 7 days after treatment. Wash your underwear, pajamas, sheets and any clothes that contain sweat, blood or urine separately from the laundry of others in your household, using a standard washing cycle. You do not need to use bleach and do not need extra rinses.

Waste disposal recommendations
All items to be thrown away should be discarded in a separate plastic waste disposal bag to be used only for this purpose. Keep the plastic waste disposal bags separate from the other household waste and away from children and animals. A member of the hospital staff will tell you how and when to get rid of these waste disposal bags.

Replying for my husband.
We are wondering if you have finished your Provicto treatments and how you did with the outcome. My husband is on round three and has tolerated it other than some diarrhea. His pain has improved. What was your treatment after Provicto?
God bless you.. any person going through this is a champ.

Pluvicto update:

I had my fourth Pluvicto infusion last Wednesday, Today is Saturday, three days after the infusion. As you know if you have been following me on this thread, I have a dosimeter (geiger counter) which I purchased from Amazon for about $100 and use it to monitor my radiation levels. Their generic guidelines tell you to stay three feet away from everyone for three days (a week from small children and pregnant women) and sleep in separate beds for that three day period. If you just follow these generic guidelines you are led to believe that after three days you no longer pose any danger to anyone else (what I call "collateral damage") and it is perfectly safe to resume "normal" life. I disagree. My dosimeter radiation reading at the end of three days is still 1.86. That's maybe half of what it was when I left the treatment center three days ago but, in my opinion, still poses a significant risk to others. They try to minimize the risk, I suppose trying not to scare you in this area that few of us know anything about (but we become knowledgeable out of necessity). They tell you not to worry, that any exposure to others is minimal and can't even begin to manifest any signs or symptoms for twenty years. Well, just think about that for a minute. If you expose your 25 year old grandson or granddaughter to your still ongoing radiation emission you are opening them up for potential problems when they become 45. I choose not to do that. I start by isolating myself not for the three days they tell you is "safe", but rather I isolate myself for a week to begin with, and then allow limited contact for another week.

I will update everyone again at the seven day mark after infusion.

Hope my experience will be helpful to others currently undergoing the Pluvicto treatrment or contemplating doing so. My side effects have been tolerable and manageable. My primary side effect is constipation. That is not the same for everyone and others in this thread have had much worse side effects, so just be cautious and monitor your side effect reactions closely.

@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/?search=Pluvicto&index=discussions

Hello again. Glad your dad had a good zoom meeting. In my opinion you can never get enough information. As to side effects, you are right to be cautious about them with an 85 year old man in semi-fragile condition. As I have told you, I am 80 years old, have had three Pluvicto infusions and my side effects have been moderate and tolerable BUT everybody has their own condition and reaction. You have heard from others who have had worse reactions and side effects than me. What that says to me is get a dosimeter from Amazon and monitor your dad's radiation level experience and pay close attention to all other side effects he will undergo. He WILL have side effects. It's a matter of monitoring them and figuring out how to deal with them. If they are too bad the doctors may delay subsequent infusions. I send you prayers and wish you and your dad luck on this segment of his journey through life.

Again, please don't worry and assume your dad will have terrible side effects. Everyone is different and even older men can have mild side effects. Your dad's oncologists and their staffs can suggest ways to minimize any side effects that do occur. Hang in there! Sending a hug.