Chemo/Pluvicto or Clinical Trial?

[carguy]

I have stage 4, mcrpc with mets to pelvic lymph nodes and prostate. ADT (Firmagon and Zytiga) kept PSA undetectable for ~2.5 years, then PSA started to rise. I had radiation to prostate in March of this year, which did not help. I started a clinical trial in October at NYU (LAVA 1207 immunotherapy) and PSA doubled every 2 weeks and is now 2.6. My MO took me off the trial after 4 infusions. MO now recommendschemo first, then Pluvicto. I'm also considering a clinical trial at NY Columbia Presbyterian which is a phase 2 trial evaluating Lutetium 177Lu-PSMA-I&T compared to Xtandi (control). If I get the Xtandi, I heard it probably won't work since Zytiga has failed. Are there any suggestions for the next treatment?

[spencoid2]

I am similar to you . Dx gleason 9 9 years ago. Became metastatic and on Firmagon and abiraterone. Only worked for about 6 months and then fairly rapid PSA doubling.

Finally decided (two Medical oncologists both agreed) to do chemo instead of a trial for MCRPC without the requirement for prior chemo. I really thought chemo would be horrible but so far it has not been that bad. It can get worse with subsequent treatments and today I had my third.

If chemo is not effective (so far it looks like it is effective) or if I can not tolerate it I can switch to Lu177 as a treatment not a trial. You can lose a lot of time (yes PC is slow but I mean several months with advanced PC.

The trial I was hoping for also was having a series of delays getting started. My MOs thought I needed to make a decision soon.

[carguy in reply to spencoid2]

Thank you for your reply. You are correct, clinical trials do take a lot of time that we can’t afford to lose. I was trying to avoid chemo, but it may be the right decision if I can switch to Pluvicto later. Thanks!

[spencoid2 in reply to carguy]

I was dead set against chemo, too many horror stories. And the worst is the possibility of peripheral neuropathy. I need my hands to work and that is already a challenge with 60 plus years of assault and damage.

It took two MOs agreeing to convince me to at least do one round. I would then qualify for LU177. However after round three I feel pretty good with minimal side effects and actually feel better in some respects? So at this point my optimistic assessment is that I will buy enough time with chemo for LU177 or other similar or maybe even better treatments come along. Waiting for the trial that would then possibly assign me to a control arm seemed like less of an option.

[carguy in reply to spencoid2]

Thank you! Did you ice you hands and feet during the chemo infusions to help eliminate some of the peripheral neuropathy? I’ve heard that it may help.

[spencoid2 in reply to carguy]

yes about the ice. we live about 5 hours from the infusion center so it seems that just an cooler would not be enough unless i bought a million ice packs. i have a freezer in the van but it gets complicated if staying overnight the day before. so my solution was to get a 12 volt / 120/240 freezer/refrigerator that holds 20 quarts or so. it only draws 4 amps at 12 volts. Can use it in the car or the motel.

I bought booties and mitts on amazon. The booties were supposed to be for up to size 13 but would not fit on my 10.5 size feet so I had to make my own booties out of wet suit material.

I did eventually find something that worth of worked on amazon but it had no external insulation so warmed up really quickly.

I have some better ideas for a booty (i also made insulated mitts) but as with any new project it would require a few trials and what I have is sort of OK for now. If there were a bunch of people wanting good booties and mittens I would be more likely to design something and make a sewing pattern or two. Problem is getting appropriate gel packs. They might be available as replacements.

7 more infusions at most, is it worth the effort?

[carguy in reply to spencoid2]

Thank you for the excellent information. I have a 10.5 foot size also, so the booties probably won’t fit me either. I read somewhere that ice in plastic bags is also good, and resting your hands/feet on the ice bags. When the ice melts, replace with new bags. That may not be as effective as the booties/gloves though.

[CAMPSOUPS in reply to carguy]

My cancer team has ice bags. The ones for my feet are on top of an upside down tub so my legs are in a comfortable position.

This is way easier for me than bringing all kinds of things to the hospital with me.

ice bags feet

[CAMPSOUPS in reply to CAMPSOUPS]

Ice hands

ice hands

[carguy in reply to CAMPSOUPS]

Great, thanks for the tip!

[spencoid2 in reply to carguy]

i think ice might be even more effective than the gel packs if you have an adequate supply of it. we could pick it up right before the in fusion but instead i bought a $170 freezer.

[m1946]

That's the trouble with reading some of these articles it's like reading a foreign language!!!!

[spencoid2 in reply to m1946]

that is why we are blessed to have people like Tall Allen( and plenty others) to make sense of them for us

[m1946]

👍

[u302000]

Hope the PSA is under control.

the Weil Cornell/NY presbyterian Phase 2 is finished now but they have a "PK" trial with opening now. I will get a first treatment of LU177-PNT2002 there Monday 8/8/23. If looking for the next break through, check out the Tamarac Clinical Trial. Dr Neal shore of Myrtle Beach has a nice presentation at:

phentv.com/aiovg_videos/nov...

Cheers