All SOC failing within 3 months of each treatment starting. Gleason 9 aggressive PCA -we need your help.

[Mckelz]

Dad has advanced aggressive pca failed all SOC treatments to date with most treatments only being effective for 2-3 months. has just had surgery for bowel obstruction and now has a stoma. Mets in liver spine lymph bladder and blocking the bowel. He has low protein and has effected the healing process from surgery.We live in New Zealand and quickly running put of options. Was not a candidate for LUT-177x does anyone have any suggestions as to what next to do, clinical trails or patient funded treatment that is available here or Australia that is available for non residents. Privately funded or otherwise? My dad is a fighter and desperately wants to live. We just don’t know where to look for what’s next for him. The disease is out running us right now. He is 70 years young. Awaiting foundation genetic testing results but not holding our breath for a gene specific treatment option, as so much bad luck to date.

[Jackpine]

So sorry to hear this about your father and if he’s a fighter can have many more years.. did you do a PSMA PET scan to see if he expresses PSMA? Also the genetic testing if critical for developing a treatment strategy.

[meowlicious99]

Hello you might get better responses here if you can add detailed case history with all the options that were tried so far.

One thing i can say is that your father is still young and has a fighting spirit which counts a lot more than gleason scores or met counts.

[Tall_Allen]

You might ask for a biopsy of tumor tissue. They can perform histology, IHC and genomics. He might qualify for clinical trials running in other parts of the world.

[hansjd in reply to Tall_Allen]

Given they are in New Zealand, can he qualify for clinical trials elsewhere? How would that work unless there is a participating hospital in NZ? or do you mean travelling overseas? Do expats qualify for clinical trials say in the US?

[Tall_Allen in reply to hansjd]

In the US, clinical trials accept foreign nationals. I imagine that's true in many countries.

[Seasid in reply to Tall_Allen]

Good information. Thanks

[hansjd in reply to Tall_Allen]

Thanks for that info. I wasn’t aware it was possible to be accepted for a clinical trial in the US if you didn’t live there. I guess the problem would be that you would have to be in the US for the duration of the trial and I don’t know how easy it would be to get entry in the first place and then be able to stay long enough. It’s unfortunate, as there seem to be way more trials there than anywhere else.

[Tall_Allen in reply to hansjd]

There is a special visa (B-2) just for medical treatment in the US. The visa is for as long as it takes to get the treatment.

[hansjd in reply to Tall_Allen]

Thanks so much for that great information. So good to know.

[Mckelz in reply to Tall_Allen]

Thank you that is good to know, I wasn’t sure if they would or not.

[Javelin18]

So sorry to hear that treatments don't have long term effects. I'm in the same situation, being on the last SOC treatment just 17 months after diagnosis.

I'm starting a CAR -T trial in the US tomorrow. Other members have had success with BITE trials. I don't know if there are CAR -T locations in AUS ir NZ, but I did find three BITE trials with AUS locations

clinicaltrials.gov/ct2/resu...

[Mckelz in reply to Javelin18]

Thank you for taking the time to offer this information. I will look into these.

All the best with your trial I hope you have great results! Keep us posted!!!

[Mckelz]

Good point 2018 initial DX

Extra prostatic extension

Gleason 4+5 ISUP grade 5

Ct3/4N0

- not sure if this how it is diagnosed internationally

2018 radiation and ADT (zoladex)

Good- typical result psa significantly declined

Just by the book, ADT stopped 2 years later - Oct 2020

Jan 21 psa rise with small volume pats-aortic lymph involvement and recurrent prostate FDG avid relapse- psa 5.8 (up from 0.24 Oct 20)- bicalutamide started

April 21- psa rise to 35 commence abiraterone/prednisone.

Psa rise to 217 despite treatment aug21

Docetaxel commenced sept 21

Jan 22 extensive disease noted of pet scan

Lut-177 explored but not enough psma avid so cannot pursue this option

Cabazetaxel started psa continues to rise only to 237 so had believed it was somewhat under control but multiple new Mets discovered on CT when scanned for the bowel obstruction.

Foundation one test results will be know tomorrow - have our fingers crossed for something there.

Biopsy of lymph node showed it had not morphed into neuroendocrine

Hopeful we could get a clinical trial, happy to travel anywhere as long as dad is well enough to do so

Appreciate everyone’s input - and taking the time to comment, you all have your own battles to win.