Second opinion NYC or Philly

[Johnkelsey]

Hi all, after radiation last year and 18 months of Lupron, I’m newly diagnosed with metastatic castrate-resistant PCa, I’m being treated at Fox Chase in Philadelphia, where they seem to stick closely to the Standard of Care. I am being offered a phase 3 double-blind trial, abiraterone alone vs abiraterone with olaparib, which I will accept if nothing better appears, but I’m not persuaded that this course is the best one, for me, at this time. I’m especially impressed with recent postings on this site about extending life by getting the various treatments in the right order. So I’d like to get a second opinion from a specialist who might think a bit beyond the SoC, I’m regularly in NYC and Philadelphia. Any advice, fellow travelers?

[Darryl Partner]

You're welcome to ask about doctors at tonight's New York City Prostate Cancer Support Group and tomorrow night's (Oct 17) Advanced Prostate Cancer Group see the location and time here: malecare.org/nyc

[Johnkelsey in reply to Darryl]

Thanks Darryl I did not know of these groups, we aren’t in nyc this week but will be next week, i’ll Do my best to attend.

[Tall_Allen]

Have you had any metastases biopsied? Clinical trials are beyond the SOC. I would be very wary of any doctor offering an innovative treatment outside of a clinical trial. Great doctors at Fox Chase! The great MOs I know of at MSK aren't taking new patients, but the quality of their staff is very high and they are probably doing more clinical trials than anyone in the area. Other notables in NYC include William Oh at Mt Sinai, Charles Drake at Columbia Presbyterian, and Scott Tagawa at Weill Cornell (for radiopharmaceuticals).

[Johnkelsey in reply to Tall_Allen]

Thanks TA ... the study will do genetic testing in my original tumor biopsy cores, now it’s bone mets, I will ask if they can biopsy one of the, directly or if it would be any different than the original PCa rumor.

[Tall_Allen in reply to Johnkelsey]

Yes, they evolve over time. If by your "original tumor," you mean in the prostate, it's very different in metastases.

[Hidden in reply to Tall_Allen]

Hi TA

I follow you a lot and appreciate all of your input. I have been on lupron now for about 9 months and my PSA went down from 1.52 to .3 after three months but is now slowly climbing back up again with my latest PSA being .75. my testosterone is very good at 7. I do have seven bone Mets but they have been much calmer since on the lipron according to my scans. I am currently seeing and mo at the Mayo clinic Phoenix but would be interested in your thoughts on my PSA moving up as well as any other great cancer doctors you know here in a greater Phoenix area.

Thank you so much for your knowledge and input.

Tom

[Tall_Allen in reply to Hidden]

They usually like to see PSA ≥2 before they move to a more advanced therapy for metastatic castration-resistant PC. Sorry, I'm unfamiliar with MOs in Phoenix.

[Hidden in reply to Tall_Allen]

Well I'm not going to get too excited about it then. With my testosterone being a 7 hopefully nothing else happens. Always liked all of your input

Thanks

[j-o-h-n]

MSK in NYC...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/16/2019 7:20 PM DST

[westof in reply to j-o-h-n]

Hmm... I agree with J-O-H-N. My dx was 14 months ago: G9,stage 3 high PSA 28.

MSK has provided me, in my opinion, world class healthcare!

HDR Brachy, 25 days of IMRT and ADT (now,Lupron with Zytiga and prednisone).

The care that I've received is the essence of compassion and professionalism.

I feel great and my bloodwork is even better!

Best

[j-o-h-n in reply to westof]

Congratulations and it's great that you feel great....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/16/2019 7:53 PM DST

[Rexwaterbury]

Charles Drake. New York Presbyterian. Columbia University. At present, 4 immunotherapy clinical trials (that he told me about this week).

[Don_1213 in reply to Rexwaterbury]

He mentioned a few to me Tuesday. I'm not a candidate for them since my PSA seems to be responding well to SOC, but Dr. Drake is the guy to talk to about trials.

[Metungboy]

Try Australia or Canada or New Zealand or any of the Scandinavian countries.

More sophisticated and cheaper.

[curious-mind1]

I would suggest Charles Drake as well, based on our personal experiences.

[Magnus1964]

I have always been pleased with the medical treatment here in Lancaster County. But that is my choice.

[Johnkelsey in reply to Magnus1964]

Who are you seeing in Lancaster?

[Magnus1964 in reply to Johnkelsey]

Dr Paul Siebert, he is with the Lancaster Urology group at the campus. He does all of the drug trials for the group.

[sbmurray]

My husband goes to Thomas Jefferson Sidney Kimmel Cancer Center in Philadelphia. They have a whole area specializing in male cancer. We have been very impressed. He sees Dr. Mile.

[Vany4]

Have you has a psma pet scan done yet? That could pinpoint where any Mets are better than any other scan now, and perhaps you can hit it with stereotactic body radiation therapy to focus on where it is