Sadly Pluvicto did not work ...

[TheWizardofWesley]

After receiving the results from my PSMA PET scan at the Mayo Clinic in Jacksonville, I am sad to say my disease is progressing. I had four Pluvicto infusions with no SE's what so ever.. I felt that they mirrored my Docetaxel treatments again other than my hair falling out I had no other SE's. which led me to believe that neither of these treatments were working and I was right. My Dr at Moffitt wants to start me on Cabazitaxel, while Dr. Kwon at the Mayo Clinic in Rochester wants me to start a Platinum based chemo.. While I still feel pretty good...Time is running out and I would like to get as much time and QOL as I can. Any Input would be greatly appreciated. Thanks' Larry ~The Wizard of Wesley Chapel

[TeleGuy]

can you please fill out your profile so we can see what you have tried over the past many years? Any biopsies and genetic profiling?

[TheWizardofWesley in reply to TeleGuy]

Had the Guardant360 test done Dec 2021 at the Mayo Clinic in Rochester. I do not have the BRACA gene but I was told my Cancer does?? I've been on ALL of the Oral drugs over the last 1o years. last successful treatment was a Trial of Olaparib +Zitiga (Abiraterone acetate) which worked for about 20 Cycles before it failed and then I went on Docetaxel, which also failed.

[Tall_Allen]

Have you had any metastases biopsied?

[TheWizardofWesley in reply to Tall_Allen]

Not yet Tall _Allen, I believe they are going to take some tissue and re submit the Guardant360 test again.

[Chiquis]

Hi Larry, I'm sorry to hear this. It's a good thing that you feel good. I pray that you continue to feel good for many years. You are not alone🙏🙏

[Ramp7]

I to did LuPSMA177 at Dana Farber but as with you the results were not durable. I met with Dr. Sam Denmeade at Johns Hopkins this past January. Presently doing a self administered BAT protocol with the assistance of my local MO. Responding well so far.

urotoday.com/video-lectures...

[db1966]

I’m in the same boat as you completing 4 Pluvicto o treatments. I am on cabitaxel ( done 2) but not feeling any improvement. My journey is well documented having been diagnosed in 2015. Your bio does not tell us anything about you so perhaps you could take the time so we can understand your situation.

Are you in any pain now or prior to pluvicto?

What is the wizard of Wesley?

[TheWizardofWesley in reply to db1966]

The Wizard of Wesley Chapel is a nick name.. No pain to speak of.. occasional sense of bone pain,or so I think...but it is intermittent. Mostly fatigue by the end of the day.

[db1966 in reply to TheWizardofWesley]

could it be that disease is stable. If you only have minor pain then perhaps things are not that bad? What exactly are the scans saying? Are you on pain meds? Im taking oxycodone/ fentanyl patches and morphine occasionally to manage the severe pain my scans show the whole right side of my pelvis has progressed hence the pain

[TheWizardofWesley in reply to db1966]

My PAMA PET scans show new uptakes, According to Dr.Kwon, I have 20 +areas of activity. His words were you are in trouble, and I suggest you fight to get a platinum based chemo since all other SOC methods have been exhausted over the last 12 years.

[David1567 in reply to db1966]

Db166 maybe see if your MO would add carboplatin to your Cabitaxel? My husband is about to do his 4th infusion Monday of this combo since failing abi (zytiga). He had been in a sudden large amount of pain since march and it has taken 3 infusions to subside the pain. He only now has started to feel like himself. Although he feels this combo has knocked him on his butt after he tolerated doxetaxel so well. His PSA has been dropping as well, but less pain is the biggest indicator it’s working for now at least.

Anyway don’t give up on the Cabitaxel too soon. It takes a few treatments to feel better.

Best wishes, Tracey

[db1966 in reply to David1567]

how do I ask my MO to add carboplatin? If i tell him someone on a forum said to try it he will laugh at me? Or Is it a cocktail known to them and used regurley?

[David1567 in reply to db1966]

it’s used regularly. Tall Allen had suggested it sometime ago when I asked what treatment would be next , and I just asked the our MO about carboplatin when she said Cabitaxel , and she jumped on it. So now it’s her idea.

I read about it everywhere now so maybe it’s becoming another standard of care

Best wishes

[TheWizardofWesley in reply to David1567]

Thank you David, Seems my MO at Moffitt has a very soft EGO.. and does not take well to any suggestions.. I am going to Tampa General's Cancer Clinic and seeing my original MO from Moffitt a Dr. Mayer Fishman who was fantastic. Hopefully I will get some cooperation from him.

[Fightinghard]

larry

Im just ahead of you. I passed thru Westley on my frequent trips to Moffitt. Kwon was my original dr at Moffit before he went to Mayo. Did every treatment (Provenge, Pluvicto, plus SOC) Completed 4 cycles of Cabazitaxel after everything else failed. blood counts started falling and not able to take any more

Lucky you are not having pain. Best wishes and hope you can find something that helps slow the beast

[TheWizardofWesley]

Hey Fightinghard, Thank you for your good wishes and responding. I had no Idea that Dr. Kwon was at Moffitt... He never mentioned it to me. All that he has ever said.. is that it is criminal how they treat patients at Moffitt.. and I have to agree. . I hope that your counts come back so you can continue to "FIGHTHARD"

[robert570]

I came down with prostate cancer almost 10 years ago. I have the agressive type which was a 9 on the gleason scale. Following removal, my PSA levels started falling. I had in this order, Provenge Treatment, Lupron, (Twice a year), Radiation, Chemo (Docetaxel), Zytiga & Prednisone, Xtandi, Jevtana (Cabazitaxel), and now Pluvicto. My PSA from a high of 10.4 before prostate removal, down to a low of .18 with Zytiga. Slowly started to rise with Xtandi and leveled off with Jevtana. Now with Pluvicto after 2 treatments it now sits at 4.90 up from the begining of Pluvicto which was 2.31. I'm concerned, Oncologist is not. There's many more drugs after this one. I don't feel death is near and my gut feeling has me going on 10 years. My mind, soul, and sense of humor will get me into 2024 and beyond. Don't give up, ever.

[TheWizardofWesley in reply to robert570]

Twelve years here, I was told that Pluvicto was basically the end of the line as far as treatments go??

[j-o-h-n in reply to robert570]

Definitely your sense of humor will.........

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 07/15/2023 4:02 PM DST

[monte1111 in reply to j-o-h-n]

As long as you still have a gut.

[j-o-h-n in reply to monte1111]

Now I'm going thru a sleeping jage- sleeping day and night and do not have strength....Going to see my MO Friday and my Cardiologist next week. FIND OUT WHAT'S GOING ON. TAKE CARE.

Good Luck, Good Health and Good Humor.

J-o-h-n Wednesday 07/19/2023 7:26 PM DST

[TheWizardofWesley in reply to j-o-h-n]

Good Luck John

[j-o-h-n in reply to TheWizardofWesley]

Thank you WoW....

Good Luck, Good Health and Good Humor.

J-o-h-n Thursday 07/20/2023 10:53 AM DST

[GP24]

I would follow Dr. Kwons advice and get a Platinum based chemo. You can always get Cabazitaxel some time after that.

[Yadifan]

I'm sorry Pluvicto didn't work for you. My husband will be starting Cabazitaxel in a couple of weeks. He completed all 6 treatments of Pluvicto with little side effects and a good response to his PSA, but it's been rising since his completion of treatment. He completed treatment #6 on March 23rd.