Anyone on Pluvicto? Looking for a support team

We discovered Pluvicto didn't work for my husband because
Of a specific genetic mutation causing cancer to be more aggressive. While it limits options for him, the genetic testing he had was a good idea. Helps determine immunotherapy options and which drugs or drug combos might be most effective. Good luck with your journey

Howdy All,
I've completed 2 cycles of Pluvicto and due for a third early July. This was necessary because, after 5 years of treatments...radiation, chemotherapy, ADT all this time and negative on scans for 2 years, the cancer metastasized yet again.
I've been fortunate to handle all phases fairly well, except for CV issues with Eligard which I then changed to Firmagon.
Pluvicto is a different beast...The main side effect I experience is EXTREME fatigue (not just "fatigue" as advertised...LOL). All important blood levels have remained consistently within normal range, but after the second treatment the PSA went down 67%. Very good, and makes the fatigue worthwhile....
However, I did suspend ADT (Firmagon) because I was having more CV issues...shortness of breath, high ventricular rate, PVCs, etc. (This was against my Oncologist's advice, but I know my body.) In addition, I don't know if Pluvicto amplifies the "brain fog", but it sure seems like it....Reports say cognitive functions generally return to normal after about 3 months after ceasing ADT.........but I may have to return to ADT.......

In closing, I've had good results certainly justifying the change in lifestyle. As someone previously alluded to, I say "I'd rather be tired than dead"...a rather blunt reality check!

Blessings to all

I was a Pluvicto clinical trial patient for Norvartis Pharmaceutical in 2021-22, receiving rounds. It was my wonder drug and had virtual very little fatigue at any time. Upon the return of the prostate cancer about 2024, I have repeated 4 of the 6 rounds, through a very special arrangement. Again, I responded remarkably with only little fatigue. As others have said, each person reacts differently. I absolutely stay as active as I can with life, including competitive tennis, biking and daily life with family. I eat well and get adequate sleep. For me, this lifestyle as played a hugh role in my response to Pluvicto and fighting off fatigue.
Good luck with what you and others are going through.

Metastatic prostate cancer. Have been doing hormone therapy (Abiraterone and Relugolix) for the past year, but after significant PSA decline, numbers have started jumping up again. Recently recommended by my oncologist to start Pluvicto. I'm still trying to decide if I really want to make that jump. Does anyone else on here, taking Pluvicto, have COPD and a heart condition? If so, how have your treatments gone?

Along with this group, I recommend AnCan's High Risk/Recurrence group that meets online twice monthly. Several doctors are among the members, and Pluvicto is a common medication discussed. All the best for successful treatment! https://mailchi.mp/c8d6a583f3d9/tuesday-meeting-high-riskrecurrentadvanced-prostate-cancer-group-reminder-newsletter-tue-91526-6pm-eastern

@gwbell3
If your PSA is rising while you are on double therapy, that usually means you Have become castrate resistant. That happened to me six years ago with just ADT.

You could ask your doctor to switch you from abiraterone To one of The lutamides. Darolutamide Has the least side effects and would be preferred if you have a choice. Abiraterone or Enzalutamide Also could work. They’ve been shown to be effective to keep the PSA down when abiraterone Treatment fails.

You want a PSMA PET scan, however, to see if there are any metastasis that are visible. If there are they can frequently be zapped with SBRT Radiation.

A couple of different things to talk with your doctor about.

@bicio58 I hate to hear you do not have enough support that breaks my heart! My father is 90 years old and is going through Pluvicto treatments and is about to have his second so that's why I am on the site and I'm also going to try to give you some advice from what our doctors have my father do because all oncologist s do their treatment protocols just a little different. Is your oncologist have you taking steroid treatment one day prior to your treatment and for a certain amount of days after your dose? Because the steroids really make a difference with the energy level and the appetite and what we found was that when we tried to take him off of the steroids his energy level and appetite went way down so for his case we have asked for him to be on a low dose for a longer time to help ease with that and possibly on a very low dose everyday even between treatments I don't know if that's something that sounds good to you but is really made a huge difference with my father's quality of life. Anytime you're energy level is increased and your appetite is better is a good day in my book. I pray this advice will be helpful for you and I pray that you have success with your treatment.