Pluvicto, Not Helping

[bglendi53]

I just had round 5 of Pluvicto on August 10th. I don't see where is is helping much, if any, at all. My PSA before entering round 5 is now over 400. I'm so anemic I've had two blood transfusions in the past 30 days. When I went in for round 5 I was so weak and frail that I had to be pushed around in a wheelchair, unable to walk and feel steady on my feet.

I haven't seen my oncologist since I started to program at the Cleveland Clinic, the only people I see are the hematologists, and CNP's. Now they want to do traditional CT and Bone Scans for the 11th time and won't even make the effort to to get some kind of a PSMA-Pet scan. I always thought that a PSMA-Pet scan would be required at the end of the Pluvicto treatments. They seem to think otherwise. I'm starting to think they just don't want to be bothered trying to get approval.

So, this Thursday I am seeking a second opinion at University Hospitals, also in Cleveland. I heard they have a pretty solid cancer center there as well. I just don't get where CC is coming from anymore. My PSA has done nothing but rise, my QOL continues to get worse, and they just don't seem to want any of my input.

Anyone else having issues like this with CC or any other hospitals?

[Clays711]

I use CC. I also made it a point to seek a second opinion. I thought about UH but figured that there are too many doctors that switch from CC to UH etc. I chose Mayo Clinic for a second opinion because I have relatives out that way.

My experience is that Mayo was far more aggressive in my treatment than CC. Essentially, Mayo is steering the ship and CC is implementing the treatment. I can't say with 100% certainty, but I believe I was CC's first triplet therapy patient and have forced my way into regular PSMA PET scans.

I wish you luck. Be your own advocate.

[bglendi53 in reply to Clays711]

My problem is I'm a long way from the Mayo, almost 1000 miles. I'm 200 miles east of CC

[Skifanatic]

As difficult as it is to change, definitely sounds like you need a new team, not just a second opinion. I switched my care to Mayo in 2022 because, just like Clays711 said, I felt they offered more aggressive treatment than what I had been receiving — and with my cancer and it’s aggressiveness, I needed more than SOC. Here are a couple of examples. I’m headed into my fourth Pluvicto treatment. At every other treatment, I do a Guardant 360 mutation analysis along with my regular bloodwork to see if any treatable mutations have developed. Also, just before treatment #3 and #5 I receive a PSMA Pet scan to see how the treatment is working. After treatment #6, I will receive a Choline-11 Pet scan to see if there is any PSMA-negative cancer evident (I realize we’ve had some debate on this site about the effectiveness of C-11 versus FDG). Based on what you’re saying about Cleveland Clinic, I’d agree that you need to make a change.