Can anyone share their experience with Pluvicto?

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.

Interesting Pluvicto/PSA encounter after shot #3. My PSA went flying from 7 to 12. Just like that my hope deflated awaiting arrival of my PSA depression. My oncologist recommended stoping Pluvicto, and go right to scans and XTANDi. After he consulted with my Radiation Oncologist, Nuclear Oncologist, and other Oncologist, he/we/they came to the conclusion this looks like a PSA Flare. PSA Flares happen, the recommendation for the docs was to take one more injection, wait two weeks, do a Pet-Scan, and Bone scan and take it from here. This works well for me.

Anyone else have a PSA Flare-up while on Pluvicto?

Interesting Pluvicto/PSA encounter after shot #3. My PSA went flying from 7 to 12. Just like that my hope deflated awaiting arrival of my PSA depression. My oncologist recommended stoping Pluvicto, and go right to scans and XTANDi. After he consulted with my Radiation Oncologist, Nuclear Oncologist, and other Oncologist, he/we/they came to the conclusion this looks like a PSA Flare. PSA Flares happen, the recommendation for the docs was to take one more injection, wait two weeks, do a Pet-Scan, and Bone scan and take it from here. This works well for me.

Anyone else have a PSA Flare-up while on Pluvicto?

Be aware that 1/3 of people have really good results from Pluvicto, 1/3 Respond OK and 1/3 get nothing from it.

Pluvicto genetic issues
RB1, PTen, TP53 are Pluvicto resistant
ATM & BRCA work better with Pluvicto

Have you had a hereditary Test or a somatic test? It would be good to have both before having Pluvicto So you can see if you have a genetic conflict.

Some people have some major side effects from Pluvicto, most don’t. I have heard at least 5 people talk about their experience, In some cases they had to have more time between doses because of the side effects.

I saw a webinar where they discussed a person who lit up the Pet scan With metastasis from head to Legs. He had one Pluvicto Treatment and it almost cleared his pet scan, But his side effects were so bad that he could not take any more treatments

Has anyone heard information on whether the radiation of Pluvicto targets and damages healthy tissue as well the cancerous tissue? Asking because salvage radiation damaged my bladder and destroyed the urethra. Want to avoid a reoccurrence.

To @lsk1000
Pluvicto can also affect healthy cells, particularly those that express PSMA, which is a protein found on some healthy cells as well as cancer cells. This can lead to side effects like low blood cell counts, kidney damage, and fatigue,

Yes--this is an important addition to the information in the Mayo excerpt I just posted. Thank you, Jeff.