Serious Advice Wanted

[Leps]

I'm looking for serious advice. Please see my bio. I've had 6 good years and have pretty well run through the BSoC. I have no idea what I might suggest to my oncologist as a possibility after my upcoming 6th infusion of Cabazitaxel plus Carboplatin. Thanks in advance, Leps

[MoonRocket]

You should get genetic testing done to see if you have any DNA mutations that are on the approved use of parp inhibitors, etc. Clinical trials should also be explored.

[Leps in reply to MoonRocket]

Actually this has been done twice for me with no luck. The last time was about 18 months ago.

[MoonRocket in reply to Leps]

What clinical trials are you researching?

[Leps in reply to MoonRocket]

My oncologist at Mayo and my local oncologists have been the ones doing the looking. They are the experts. There might be a trial that would work somewhere, but the trial would have to be somewhere I could travel to. Practical limitations.

[RyderLake2]

Hello,

You might want to look at a radioligand drug like Lutetium.

[Leps in reply to RyderLake2]

I already had Pluvicto and got good results. If I had piles of cash, like a spare million, I'd figure out how to receive more. At a $160,000+ per dose it would eat up the money we need for my wife's later years.

[Lizzo30]

Have you tried transdermal Estrodiol patches ? Some men in US are able to get them prescribed

[Leps in reply to Lizzo30]

I don't understand what they might do for me that lupron or equivalent already does. Please explain.

[Lizzo30 in reply to Leps]

Transdermal Estrodial patches can supress testosterone as good as Lupron without debilitating side effects bc estrodial will strengthen bones and protect the heart Ask your oncologist if they prescribes it - men from US have been prescribed it but UK oncologists do not

[CAMPSOUPS in reply to Leps]

I swear some don't read the posters post and bio.

YOur not looking at side effect relief. Estrodal and Lupron put the brakes on the cancer fairly equally. Like me you are nearing the end of treatments. Your looking for some beneficial treatment against your PC progression.

I have and continue to benefit from Pluvicto.

Probable (but it could change) game plan discussed with me is when I start to progress again Cabitaxal, trials, hospice.

Sounds like you have good docs. Im lucky to have the same. They hopefully will come up with a trial that you can enter. The couple trials possible on my list are pretty promising.

The TAK-280 clinical trial.

- Alternatively, I might qualify for the CONV01-alpha trial using 225Ac-PSMA-J591.

You know too how complex this is. The trial discussion was before I started Pluvicto. Maybe my good response to it will indicate to my MO other treatment or trials that will be beneficial. I'm no expert at this but my miniscule studies cause me to put a lot of hope in the 225Ac-PSMA-J591.

Theoretically I had a ton of PSMA avid cells and they have pretty much been annihilated. That leaves a percentage, should be small percentage of cells remaining. What to hit them with? I'll ask my MO when the time comes but for now I'm livin in the moment of great Pluvicto results.

Brother I hope sincerely you get some beneficial treatment. Do your best to accomodate a trial that is a distance from you. There might be a low cost or free living arrangement near the trial hospital arranged by the hospital or the trial team.

Hang in there man.

❤️❤️❤️

[Leps in reply to CAMPSOUPS]

CAMPSOUPS, Thanks much for your reply. I started my journey about the same time as you and with a PSA similar to yours. I will check out the two trials you mentioned to see if they might work for me. Even though I feel well, almost normal, presently, I suspect that palliative care is not that far off. I told my wife today that I figure there are about four to six months left of feeling good unless another treatment is offered. Leps

[CAMPSOUPS in reply to Leps]

Since we don't really know I'm gonna say I think you'll do a helluva lot better than that. Keepin fingers crossed.

[Leps in reply to CAMPSOUPS]

CAMPSOUPS, When I see my oncologist next week, I will bring up the TAK-280 clinical trial. One of the recruiting locations is within range. Again, thanks much, Leps

[Carlosbach in reply to CAMPSOUPS]

Excellent response Camps

[CAMPSOUPS]

Oh man thats promising. I'm hopin for the best man

Cheers

Soups

[MarkBC]

I don't have any specific advice for you. Hopefully you have an oncologist that you trust and who is current with all the latest science and trials. Hopefully the MO sets you up on the best path forward. You can always get a second opinion.

Please post what your oncologist tells you. I am 6.5 years in and, fortunately, the ADT and abiraterone are still working. I expect I will be in your shoes sometime in the near future.

Best of luck.

[Sisto]

Two more possibilities come to mind: Provenge, although you could be a bit far along for that to be much help; and BAT, which might give you a reset on Xtandi and Zytiga. Good fortune whatever you try!

[Leps in reply to Sisto]

Sisto, Thanks for your suggestion. I was thinking about asking my oncologist about a re-challenge with Zytiga, so now perhaps BAT can be added to the possibilities. I do fear that my oncologist may not be anymore familiar with BAT than I was until a half hour ago. But my Mayo oncologist might have something to offer. The NIH page on BAT is informative. Thanks again, Leps

[Sisto in reply to Leps]

Leps- When I showed an end to Zytiga with prednisone, my Onc suggested trading dexamethasone for the prednisone and I got almost another year out of Zytiga. Then, as almost a Hail Mary, he tried Zoladex and I’ve gotten nearly two years from that, intermittently. I’ll likely be heading to BAT soon, methinks. Again, good luck, friend.

[Rolphs]

This phase 1 study is getting a lot press and may be worth exploring if you’re near any of the sites: The Phase 1 clinical trial (ENGAGER-PSMA-01) is a multi-center, open-label dose escalation trial to evaluate ascending doses of JANX007 in patients with metastatic castration-resistant prostate cancer (mCRPC). This trial will assess the safety, tolerability, pharmacokinetic, pharmacodynamic, and the preliminary efficacy of JANX007 as a single agent in adult subjects with mCRPC.

For additional information about the trial, please visit clinicaltrials.gov using the identifier NCT05519449.

Program:

JANX008 (EGFR x CD3 TRACTr)

Status:

Active, Recruiting

The Phase 1 clinical trial is a first-in-human, Phase 1/1b, open-label, multicenter dose escalation and dose expansion study to assess the safety, tolerability, pharmacokinetics, pharmacodynamics, and preliminary anti-tumor activity of JANX008 in adult subjects with advanced or metastatic carcinoma expressing EGFR.

For additional information about the trial, please visit clinicaltrials.gov using the identifier NCT05783622.

We have a range of precision immuno-oncology programs in development designed to address large numbers of patients in desperate need.

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Good Luck!

[Leps in reply to Rolphs]

Rolphs. Nothing within my range. Thanks anyway, Leps

[SsgCulldelight]

Hey Leps seems as though you are far more advanced than I, my psa is undetectable X 10 years on luproglide androgen therapy shots every 6 months initially in conjunction with nilutemide tablets once a day. I've been on holiday from shots 3 years now so undetectable. That said oh audio I did have a radical prostatectomy as well, but nothing like what your going through with all those different meds, and infusions. Peace and power to you bro, positive affirmation works my friend, and let go of any negativity I don't care who it comes from, it only depletes you mental physically and spiritually. As long as your psa bombers are low focus on diet and exercise, cut the sugar intake to 0. I keep on touch for support and reinforcement, in here any time bro, this is where we let go of stuff and address this issues that may hurt others feelings, now is the time to be selfish sir cuz at the end of the day it's all you anyway, embrace yourself, be kind and compassionate by doing tolerate NO BS from anyone, because we all wind up taken that to bed with us and screwing up our sleep, attitude, mind set, and a host of other physical issues manifest because of worry, concern and care about things and people we have no power to change. Yes it's a lot, but I don't lie concerning our Health. Cheers, we chat later Friend.

[dk73]

after all other SOC treatments, including surgery/radiation and taxotere twice, we did pluvicto which resulted in a massive spread of bone Mets, skull to femurs. In April this year he started indefinite rounds of Jevtana. By 8/30, PSA was 32 and ALP was normal range. Then he went through almost 3 months of radiation cystitis. 8 ER visits, 23 days in the hospital, 4 surgeries and 2 blood transfusions. Chemo stopped. These last 3 months have been worse than any other treatment since starting out in 2016. He is weak, lost 23#, hardly eats, rests all day because small amounts of exertion causes such stress on his body. We meet with oncology tomorrow. ALP back up out of range and PSA 227. So I’m sure we will return to Jevtana. Medicare approved a years worth of treatments every 3 weeks. Not sure how his body will react though. He’s never experienced such body weakness as he does right now. Good luck!

[CAMPSOUPS]

I hope sending you a PM (personal message) chat didnt alarm you.

Anyways keep up the good work to keep you around longer.

[FrostGyre]

Can you give examples of what you would consider not serious advice?

[Leps in reply to FrostGyre]

I will not. That said, there have been several excellent suggestions made in response to my original query, good enough that I will talk to my oncologist next week about them.

[CAMPSOUPS in reply to FrostGyre]

I cant believe it.

Glad the poster knew what you were up to.

[j-o-h-n]

Serious Advice Wanted. I guess that rules me out.

Good Luck, Good Health and Good Humor.

j-o-h-n

[AlmostnoHope]

There is a way. Read my bio and DM me as.i won't say what I do on here for 14 years later because I was told to do LU177 when it first was available. Glad I didnt.