Pluvicto has failed. I went through four sessions and had severe side effects of exhaustion and GI problems as well as it seemed to stimulate my foot neuropathy. My PSA went down during injection 2 and 3 but then came back up in 4. Disappointing...
I just met my new MO at the Mayo Clinic Phoenix. His name is Dr Riaz and we like him. He spent a lot of time looking at my 21 years of medical history and asked a lot of interesting questions. He is very concerned with my low hemoglobin at 8 and the rest of my tests showing anemia. He asked me if I really thought I could stand another round of chemotherapy.
Even though my PSA is rising, he said we should take a 30- or 60-day rest to try to strengthen my body through blood infusions to see where we go next. Have any of you been at this crossroad and what did you decide to do. I seem to be feeling better every day and having in blood infusion tomorrow, which should make me feel much better.
Discuss a liquid biopsy. If it comes up positive then get a bone biopsy. Blood biopsies work with circulating tumor cells which are not expressly cancer but have other origins
After my BCR, I sought a second opinion from a researcher at MSK NY. He confirmed my MOs treatment but also recommended a Foundation One CDX on the tissue from my RP. That test detected ATM mutation which opens the opportunity to try Lynparza and or an ATR Inhibitor when needed. Hopefully not for some time 🤞
I've come to learn that liquid biopsies can yield false positives, ATM being one of the major offenders. It thought this is the reason the PARP trials weren't effective for ATM mutations. Work is still being done on this.
I would also suggest considering BAT, perhaps modified from the original as a number of us are doing. I have been on long-cycle BAT for 2.5 years and remain hormone sensitive and undetectable PSA. You would like how you feel on it most likely. And it can also raise Hemoglobin levels. You could do a virtual consult with Denmeade who supports and advises MOs with it outside of trials. Suggest you get Russ Holyer's book on Amazon (Kindle) on: Adaptive Bipolar Androgen Therapy. Compiles much information in an honest and accurate way. One does not know how one will respond to it, PCa wise. But is straight forward to monitor and drop it if not a favorable responder. Paul
"Regular BAT" is what was used in trials in mCRPC and showed benefit that was "proof of concept". But it was not optimized (IMO) it used one injection of long lasting testosterone cypionate every 28 days. This gives a very high level (supraphysiologic, >1,000 ng/dL). that is one half of the bipolar. However it decays over the ensuing weeks at about half life of around 7 days. So the true high period was only around one week. Then it drops to around 75 to 100 by the end of the 4 weeks. Low but not castrate level. So not optimal to test truly cycling supraphysiologic (for some time period) with a castrate (T<50) period. Various more refined schemes are in use now. Russ' Book explains many of the options and is worth your time and effort to ready. He and I are available to discuss it further. The whys and the how to's.
Regular BAT had a time of positive PCa control in around 35-40% as monitored by drops and stable PSA and periodic scans. Another third had a period of stabilization, moderate responders. And the other third (roughly) had unfavorable responses with progressive rising PSA on BAT cycles. Those discontinued it and largely returned to their baseline and had no progression on scans resulting from their experiment al trial. So I found that reassuring. BAT programs, including several variations currently in formal clinical trials generally exclude those with critical symptomatic bone mets such as in the spine. BAT has only been tried in mCRPC for the most part but it actually works well in HSPC as several of us have demonstrated.
ADT is most often maintained during BAT even though it is not doing anything except perhaps during the low-T castrate cycles. My regimen was selected because my PCa is slow growing (long PSADT recently. So I chose longer time on high testosterone (up to 12 weeks) alternating with 4 weeks castrate T using Orgovyx and adding Darolutamide for the first two weeks. You might better consider something like one month high T alternating with one month castrate. Or you could just use "Regular BAT" program for a few cycles and see how you respond. In your situation you need to know if you are a favorable or unfavorable responder early on. A consult with Sam Denmeade is also an option.
Yes, I believe I have had an FDG pet. My cancer thankfully is not in any of my soft tissues per my scans. But extensive in my bones. I’m going to get a gnomic test.
Thanks so much for your input. I so trust your opinion. Tom.
What a great journey for 21 years. Not many can say that. You’ve been blessed with a decent QOL it seems. As we get older we get hammered hard with the medications and therapy’s. Thats my experience and the comments from many others on site. For me a nice thick Halibut steak and nice glass of beverage and I’m ready for a nap. Life is good. Cheers! 🥂
hate to hear that Pluvicto failed you. Did the bad side effects you experienced start with the first dose, or was it a cumulative thing that worsened with each dose. I ask because I just had my first dose.
The side effects were cumulative. A lot of guys have no problem with it whatsoever. My best of luck to you. It is a wonder drug for people. I appreciate your input. Tom
Theres a radiation doc at Okla Surgical Hospital who works with the USO docs, name is Goad. He did my salvage radiation and I’ve had good results, but don’t think he’s exactly cutting edge. Best to you with PLUVICTO.
Pluvicto failed me after 3 infusions. My PSA went from 1.56 to 20.83I stopped it myself. They put me back on Jevtana with carboplatin. Having a tough time with the nuelasta shot that comes 24 hours after the infusion. Here I sit right now with body aches and weakness. I usually recover by now. All my red blood counts are a little low but nothing serious. If this feeling doesn't go away soon, going to the ER for another IV to perk me up. I get this done every 3 weeks. Starting to get frustrated.
Wow Robert I’m so sorry.. Is Jevtana the same as Cabot axel? Sorry about the spelling. What is the shot you get after the procedure? My MO is not sure my body is ready for that again soon. My PSA is 30 and rising. I think I’d rather feel better.. Is the procedure working. Is your PSA going down?
I believe that Jevtana and Cabazitaxel is the same chemo. Im assuming you already had Docetaxel chemo? Is so, did you respond well to it? They said I responded really well to the Docetaxel, but it only worked for about 3-4 months and PSA started rising again. Im not sure I consider that to be stellar results.....
Robert, wondering if you have been advised to take Claritin - I believe it helps a lot with the Neulasta. My husband had very little SE with the Neulasta shots.
Not that I know of - my husband was advised to take regular Claritin twice a day (so a double dosage, I believe) for several days before & after chemo & neulasta.
My next infusion is on the 15th. I will take the double dosage. My doctor told me to take it but not how much. I'm 6'3" so I know 2 won't hurt. Thanks!
Very sorry for the suffering you have endured from the Pluvicto side effects. It sounds really hard. It sounds like your body definitely needs that time to rebound.
This is the most popular treatment currently for mCRPC that's not responding to other therapies. I hope it does work for you!
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