Update:
Traveled to Jacksonville, FL to get a second opinion from the Mayo Clinic.
Got all of my IU Health Doctors agree to consult with my Mayo Doctors when they need some guidance and when I ask. Beginning valuable connections.
Restarted started a Lupron shot every 3 months.
Started Enzalutamide (160Mg daily) and
Another CT scan to help RO design a stereotactic body radiotherapy (SBRT) program
Start SBRT in August 2024
Opinions request: Should I be pushing for Triplet Therapy?
I saw Dr. Winston Tan at Mayo JAX about five years ago, but wound up sticking with local MO. Recently, I called them about Provenge immunotherapy but they quit using it at some point.
I like the facility there, though. I accompany a friend who had major colon cancer treatment there beginning in 2017. Always a pleasant environment, easy to park (but getting harder!).
Yes - we really liked it there.
I refused to subject myself to the nasty Lupron injections 20 years ago for my prostate cancer. All I ever did was to apply Oestrogel which I buy OTC here in Thailand. Haven't done anything for over 10 years. and my PSA is undetectable. I'm now 81. I believe my cancer has been asleep for a number of years?
My email address is: ronpitelka@yahoo.com
Yet there is research showing that estrogen may promote growth of the cancer. You are lucky.
Some on here have said the PATCH trial supported estrogen use as an alternative to Lupron/Firmagan, etc.
What's your take on the PATCH trial?
Triplet would be useful for high volume metastatic disease. Have you done genetic and genomic somatic testing?
Thank you for your reply. I had a full genetic analysis and they didn't find anything that associates with Prostate Cancer and have any treatment for. I certainly would not call my "high volume metastatic" as I only have 3 small spots.
No! I'm 81, and my PSA has been undetectable for a number of years , so I'm not even concerned about PCa anymore. I stopped using E2 for about three years. If my PSA ever starts rising, I may consider your suggestion.
Hi I remember us chatting awhile back. Glad to hear you’re still undetectable! My Pca was pretty much under control after switching to Estradiol patches and adding Xgeva when psa started to climb. Everything was cool for three years but Now neither are working so I’m about to take a step in another direction. A psma CTPET scan found more bone Mets and my inclination is to have them zapped with SBRT as I did with prior oligometastatic bone Mets. I’m speaking with my MO today to work out a plan. BTW I turn 81 in January and have had Pca since 2013 at age 69. I can’t do chemo due to peripheral neuropathy. Plus I hate the thought of poisoning myself.
Then doublet therapy plus RT seem to be what most MDs would recommend. Perhaps a clinical trial would be more aggressive.
Thanks. Good to know.
I’ve read a few medical journal articles that suggest doublet, not triplet is the best approach for ductal subtype. I will try to find those references for you. And we see the MO in 10 days and will report back what we learn.
Just back from Mayo Rochester. Amazing visit! We had a list of questions and he answered them all. We have a plan, he’s starting a clinical trial aimed at reducing the ADT toxicity for lower volume, distant, recurrent mets. MO’s exact words “If someone suggests chemo, Slam the door in their face! It is not the right treatment for you!”
Great info - thank you very much! Can you share any details of how his trial will attempt to reduce the ADT toxicity? Good luck in your journey!
He’ll have SBRT for the low level distant mets then randomized to either no adt or a 6 month course of Nubeqa + lupron. Being able to continue with his career is important to him. This trial provides the best opportunity for that. Frequent travel to Rochester for 4 months, a trade off to the long term soc adt.
If you don't mind telling, how did you learn of this trial?
We were getting some pushback that it was too early whenever we mentioned an MO consult with the RO PA, so I asked hubs to look outside his cancer center. It was a guy on the Metastatic PC group in FB that suggested the MO group at Mayo Rochester - we’d considered Dr. Kwon, but hadn’t looked at the MO group there. It was impressive compared to our local options. In the intake they asked if he would be interested in clinical trials and he’d answered Yes. The MO was who accepted his case is who thought he was a good candidate for this study. He’d invited the study coordinator to listen in on our appointment. There was another test was recently filled that would have been another good option. Our RO also likes this one for us. He said the local studies at his center are usually only for newly diagnosed with mets, not recurrent disease.
IS A Post-SBRT bounce similar to primary radiation tx. bounce?
What is my best treatment option?
Should I be concerned about a PSA of 0.53 after SBRT treatment for one spot.
looking for next steps for my young husband
Divergent second opinion
