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Steve55777/ second series of Pluvicto

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Posted 4/25/2024 3:37 PM (GMT -5)
Steve, or anyone who has had a second series of Pluvicto,
We have a couple of questions for you as Denny is being considered for a second series of Pluvicto. (PSA rising and scans show new growth. Last infusion was in August.)

Most importantly, how are you doing now?
Where did you have your Pluvicto infusions?
Did you have another 6 infusions?
Were you part of a clinical trial for the second series? The coordinator at UVA told us that a second series has not yet been approved by the FDA outside of clinical trials. But they are willing to do it if insurance will cover it.
If not in a clinical trial, who is your insurance with? We have United Healthcare Medicare Advantage. They require pre-authorization and we're wondering what the chances are for getting approval. For those who do not like advantage plans, we had no other choices, but even after almost 11 years we have never had anything denied. (Yet)
The insurance is our big question mark. We were told that if we had traditional Medicare, UVA would not entertain the possibility without FDA approval because Medicare could come back a year later and demand their money back.
Thanks for any information you can share with us.
Beth
Posted 4/25/2024 3:59 PM (GMT -5)
See responses below. I tried to color code my answers but it didn't work.

Most importantly, how are you doing now? Doing well, though PSA is beginning to rise quickly. In each of my two 6-treatment sessions, PSA dropped from 65 to 0.65 and from 300 to 5.91. Since my last Pluvicto treatment PSA is now up to 32. My docs have said I should either do another chemo round or get into an Actinium 225 trial. Actinium 225 is a more powerful therapy than Pluvicto. Check it out. There may be a trial here in SoCal (and other places perhaps) where they will allow a past Pluvicto patient into a trial. I'll provide more of that when I know more.

Where did you have your Pluvicto infusions? I had six treatments of LU-177 (before FDA approval) at UCLA under a compassionate care program (for free). I then had six more treatments after FDA approval when it became Pluvicto. These six were covered fully by Medicare and administered at Hoag in Irvine, CA.

Were you part of a clinical trial for the second series? No, it was covered by Medicare, and probably not seen as "a second series" since they didn't pay for the first one.

The insurance is our big question mark. We were told that if we had traditional Medicare, UVA would not entertain the possibility without FDA approval because Medicare could come back a year later and demand their money back. Not sure what you mean here, as Pluvicto IS FDA approved. Medicare approved my Pluvicto in 24 hours, last May.
Posted 4/25/2024 5:49 PM (GMT -5)
Thanks Steve. Regarding my insurance question: The second series of Pluvicto is not FDA approved yet, according to the nurse who coordinates the UVA program. Second series is still in clinical trials. I'm going to look into clinical trials close to us in Virginia. Please let us know how the Actinium 225 works out for you. You're a trailblazer, and we all benefit from it.
Posted 10/13/2024 8:25 PM (GMT -5)
Steve55777, who had been leading the pack in metastatic prostate cancer had a sever stroke on July 13, 20024. This is his wife, Janice. After surgery for the stroke, it appeared he was getting better, but then things changed and after 5 days it was determined, hospice was the next step. 4 weeks later he had a peaceful end to his wonderful life on August 16, 2024. He was days away from beginning the clinical trial for his 3rd and stronger treatment of Pluvicto, but the stroke hit first. The stroke Dr. guessed his cancer helped create the blood clot causing the stroke.
Steve was a leader in everything and was the same with his cancer. I know he helped many through this site and wish you well. He was so blessed during his 8-year cancer journey with some loss of energy but no pain. He experienced his first bit of bone pain the night before his stroke. God spared him pain. He was deserving of this blessing.
I hope I've found the right place to post this info. There were many following him. If this message needs to be reposted somewhere else, please do. Hope and love to all, Janice
Posted 10/13/2024 9:08 PM (GMT -5)
Janice, so sorry to hear of Steve passing away. He certainly raised our hopes for beating PC. Hopefully his case will help the research on combating PC to move forward. You describe Your husband as a leader and by his posts on this site he certainly was. Please focus on the good times you had together. There will be more here to respond to this sad news as it is slow here on the weekends.
My heart is sad for your loss and we are here for you if you need to talk.
Jack

Post Edited (Jack64) : 10/13/2024 10:13:42 PM (GMT-4)

Posted 10/14/2024 7:13 AM (GMT -5)
Janice,
My condolences to you and Steve's family and friends. Steve was a very special and brave man. May he rest in peace.

Ron (Boomer)
Posted 10/14/2024 9:56 AM (GMT -5)
Janice,
Sorry about your loss. Steve’s passing is our loss too. He clearly was a leader. He provided, and really will continue to provide, hope to us guys who aren’t far behind him on the path. I always looked forward to his posts with anticipation. Thanks for letting us know.
Posted 10/14/2024 5:46 PM (GMT -5)
I join the others in sending my condolences. Your husband enlightened us in a new (for us) area of prostate cancer therapies. We are all indebted to him.
May he rest in peace, cancer free.
Posted 10/14/2024 6:46 PM (GMT -5)
Someone better than me needs to make a seperate post about Steve's passing. He was an extraordinary pioneer and warrior here. Blessings to his wife Janice and entire family.

Jim
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