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1st Pluvicto treatment done — how well does it work?
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Islandboy
Regular Member
Joined : Sep 2022
Posts : 36
Posted 5/31/2023 1:47 AM (GMT 0)
Been a while, so thought I’d provide an update. After six rounds of docetaxel + Carboplatin, which ended February 28, my tumors appeared to have shrunk a bit, and reduced their intensity (SUV), but not as dramatically as my Mayo doc would have liked to see. He put me in for Pluvicto and I had my first treatment last Thursday, 5/25. The treatment was preceded by “education” meetings and blood work, and followed up 24 hours later with a scan to see if the radioisotopes had hit their PCa targets, which they had. The scans also revealed no new metastases, which I found encouraging. I traveled back to Boston on Friday, and felt great until Monday when I got walloped with fatigue, some nausea and aches/pains primarily in my thighs and hips. Spent the day in bed, under the covers! I improved somewhat today and hope to be back 100% tomorrow. I will receive six Pluvicto treatments, one every six weeks, ending in December. When I go for my third treatment in August, they will do another PSMA Pet scan and see what kind of impact the Pluvicto is having,. Fingers crossed. I am still getting my quarterly Lupron, and taking Nubeqa. My PSA is undetectable. I would love to hear from people who have been through Pluvicto, and how well (or not) it worked to kill the cancer? I know it will eventually come back, but has it bought people time? From what I’ve read and seen, it works really well on about
a third of the patients — the other two-thirds, not so much… Sending healing thoughts and prayers.
NewspaperLover
Veteran Member
Joined : Sep 2009
Posts : 553
Posted 5/31/2023 2:19 PM (GMT 0)
Thanks for keeping us informed. A number of us probably have Pluvicto in our futures. Best wishes… Bill
Islandboy
Regular Member
Joined : Sep 2022
Posts : 36
Posted 5/31/2023 2:33 PM (GMT 0)
You bet. I will update as I get more information.
straydog
Forum Moderator
Joined : Feb 2003
Posts : 19850
Posted 5/31/2023 7:37 PM (GMT 0)
Islandboy, if you will scroll down this page you will see a post titled; Pluvicto-LU177 chapter 2 by Steve55777. He is on this treatment path. Also, if you will click on his name under his icon (on the left side) it will bring up his prior posts when he first started treatment.
I don't post in this forum, however, I wanted you to check out his info. Good luck to you.
steve55777
Regular Member
Joined : Jan 2018
Posts : 240
Posted 5/31/2023 8:13 PM (GMT 0)
Thanks for the assist Susie. I’ve now been through my seventh pluvicto treatment. See my post about
LU-177 My next Treatment which chronicles my first round of treatments. Amazing success. But you say your PSA is undetectable??? How did you get approval for pluvicto? Any way. Best of luck!!
steve55777
Regular Member
Joined : Jan 2018
Posts : 240
Posted 5/31/2023 8:19 PM (GMT 0)
Island boy—you’re not on the Vineyard are you? You mentioned trip to Boston…. Curious. We live in SoCal but have a home on the Vineyard….
Islandboy
Regular Member
Joined : Sep 2022
Posts : 36
Posted 5/31/2023 9:37 PM (GMT 0)
I've had low to undetectable PSA since diagnosis in 2019. It's a sign, I believe, of a more aggressive cancer. I had a biopsy done in 2022 and it came back as adenocarcinoma, but my doctor says it has neuroendocrine qualities. As for Pluvicto, the criteria has more to do, I believe, with the PSMA rating of the cancer (mine is #3, the brightest), and whether one has been on or through chemo (I did six rounds of docetaxel + Carboplatin) and/or a second generation ADT (I'm on Nubeqa, darolutimide). So, I'm hoping to get a good response from
Pluvicto, but am a realist. I always tend to look ahead, worst-case scenario, to understand what's next if this doesn't do the job. I'm not sure, and I'd love to hear from people with far more knowledge than I have. I'm also really interested in what's happening in Germany and Australia (and any other country that's ahead of USA on treatments...) to assess whether I should investigate travel for treatment. Anyways, that's where I am now. I read through both of your threads a few days ago and was so happy to hear you had been approved for round #2 -- and I'm curious to hear what your next PSMA Pet scan looks like. While most people celebrate a drop in PSA, my cancer doesn't have that marker so I go completely by scans!
YES, we live on the Vineyard year-round. If you're coming to the island this summer let me know and would love to get together and swap stories!
steve55777
Regular Member
Joined : Jan 2018
Posts : 240
Posted 5/31/2023 10:41 PM (GMT 0)
We’re on the Vineyard now! We’ll be here the next 3 weeks. We’re in west Tisbury. Let’s pick a time and place. Steve.
Islandboy
Regular Member
Joined : Sep 2022
Posts : 36
Posted 5/31/2023 10:58 PM (GMT 0)
Can you direct message me on this site? I’m not sure how to do it. I’m off island through Sunday. How about
a little coffee/breakfast at Black Dog Cafe on State Road 8 am Wednesday?
steve55777
Regular Member
Joined : Jan 2018
Posts : 240
Posted 5/31/2023 11:05 PM (GMT 0)
Don’t know messaging either. Black dog State Road VH at 9am Wednesday would work! (You know how amazing this is, right?)!!!
Islandboy
Regular Member
Joined : Sep 2022
Posts : 36
Posted 5/31/2023 11:48 PM (GMT 0)
Great! See you there…8 am or 9 am ( I had suggested 8 but can work w 9).
steve55777
Regular Member
Joined : Jan 2018
Posts : 240
Posted 5/31/2023 11:52 PM (GMT 0)
See you at 9
60Michael
Veteran Member
Joined : Jan 2009
Posts : 2702
Posted 6/1/2023 12:14 AM (GMT 0)
That is amazingly cool.
Michael
Cyclone-ISU
Veteran Member
Joined : Oct 2014
Posts : 3388
Posted 6/1/2023 1:22 AM (GMT 0)
The power of this website!
Two "battle brothers" with common threads in their treatment story getting together for breakfast!
You're both blazing the trail with PLUVICTO treatments!
Enjoy the fellowship, camaraderie, and get-together!
CYCLONE ~ # Iowa State University
steve55777
Regular Member
Joined : Jan 2018
Posts : 240
Posted 6/6/2023 8:23 PM (GMT 0)
Island boy: tomorrow at 9, my wife and I will be there. I’ll have a Pebble Beach golf cap on.
Islandboy
Regular Member
Joined : Sep 2022
Posts : 36
Posted 6/6/2023 8:48 PM (GMT 0)
Looking forward to it! Lots to share with each other… Rick
NewspaperLover
Veteran Member
Joined : Sep 2009
Posts : 553
Posted 6/6/2023 11:19 PM (GMT 0)
Great meeting place guys. My wife and I will be on the Vineyard end of August… Bill
steve55777
Regular Member
Joined : Jan 2018
Posts : 240
Posted 6/7/2023 9:22 AM (GMT 0)
Rick, I’m a little under the weather as of last night. Going to cancel as a precaution. Very sorry. Try to emaill me at my EarthLink.net account with Steve.Fletcher. Thanks
steve55777
Regular Member
Joined : Jan 2018
Posts : 240
Posted 6/12/2023 9:07 PM (GMT 0)
Well, after I had to cancel a couple times, Island Boy and I finally met on our island today. Sure is great to meet a fellow brother/warrior in person to discover the similarities and differences on our paths on this journey. Looks like we're on very similar Pluvicto schedules as we've each had our first tx and each get #2 in the next couple of weeks. (This is really #7 for me after completing six LU-177 treatments a couple years ago). We will closely compare our experiences and report to our forum brothers and sisters when we have meaningful info. Thanks all. - Steve
Islandboy
Regular Member
Joined : Sep 2022
Posts : 36
Posted 6/13/2023 10:36 AM (GMT 0)
What a special treat to meet with Steve and compare our histories, perspectives and just talk with someone who is on a similar path, and can understand and empathize. It will be so valuable for both of us to be able to communicate directly and share our experiences as we go through Pluvicto treatments on what appears to be a nearly identical schedule. As Steve said, we’ll share more with everyone when we have results. In the meantime, thanks to this forum for bringing us together on this little island of the coast of Massachusetts!
Cyclone-ISU
Veteran Member
Joined : Oct 2014
Posts : 3388
Posted 6/17/2023 1:24 PM (GMT 0)
So glad you fellows got together!
You're both blazing a new trail with PLUVICTO treatments.
It's tremendous that this treatment is now available & it's great that you are documenting your experiences here!
My best to you both!
C-Y-C-L-O-N-E ~ # ISU
Islandboy
Regular Member
Joined : Sep 2022
Posts : 36
Posted 6/17/2023 1:45 PM (GMT 0)
Thank you CYCLONE for your enthusiastic support.
I had my blood work done this week, 3 weeks post-treatment #1, and everything looks to be in range so treatment #2 is a GO on July 6 in Rochester, MN! I will have a PSMA Pet Scan just before my third treatment in August and I will be sure to share results here. Hoping for some good news.
centralPAdude
Regular Member
Joined : Jan 2022
Posts : 286
Posted 6/17/2023 2:43 PM (GMT 0)
Islandboy said...
Hoping for some good news.
Us too, shipmate.
Was up in Newport, RI this week for work, and thought of you guys not too far off on your island. Is a nice corner of America.
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