I would like to connect with fellow younger de Novo OMPca warriors who have completed treatment (likely through one of the several curative intent global trials or an aggressive MO) that included combined upfront ADT/chemo/2nd Line + RARP treatment to the primary with EPLND, all secondaries using SbRT, as well as adjuvant EBRT.
I have done enough research in the space to understand the data stratifying for de novo or synchronous vs recurrent. I understand the recurrent space and approaches but it’s not my rodeo.
Specifically I’m looking to share thoughts with those who hit undetectable PSA either prior or post surgery and have maintained it for at least one year, and are asymptomatic, and still hormone sensitive. Thank you!
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are2yvr
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Not sure if I fit all your criteria but here goes. 3 mets seven years after focal Chryo very aggressive MO. Lupron , Zytega , Chemo , SBRT to the 3 mets , Zometa , Celebrex and metformin. .01 for a year. Just started a “Vacation” after 21 months of treatment. I was never symptomatic.
Do you have bone mets or lymph node mets in the pelvis? Did you have a CT and bone scan or an Axumin PET scan to determine the mets? What is your current PSA value, the Gleason score and your age?
How about sharing more info about you... age? location? scores psa/gleason? treatment center? doctor's name(s)? All info voluntary but it helps us help you and helps us too.
If you should reply do so in a future post and not directed to me. Thanks...
It sounds like you hit it hard and successfully right from the start. I hope you continue to do well.
See my profile for my history and treatment. Also oligometastatic, SBRT, etc... I was not de novo metastatic, but probably just because the standard scans were not sensitive enough to detect. I had the PSMA PET scan at Johns Hopkins after recurrence following prostate bed radiation. My MO is at Dana Farber Cancer Institute and uses a conventional treatment plan. I do consult with Dr. Turner at Prostate Oncology Specialists on occasion just for another opinion.
The good news is that you were downgraded to Gleason 3+4. Also, I would not have a Choline PET/CT because it is less sensitive than a PSMA PET/CT.
Seems like you try to hit the cancer with all available treatments. I would just take a break now and see how things develop. Then you can continue with Enzalutamide if necessary. Every treatment causes side effects, most of them are lasting for a long time. Quality of life is another objective, do not just fight against cancer.
I did not have all the different therapies that you had, you can read my profile as well. I hope to stay cancer free, but I am on active surveillance now. I wish us both health and happiness! You may ask me any questions.
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