Watching PSA closely for 30+ years given father's adv. PC.

Reached 4.0 threshold 01/2012

Biopsy revealed Gleason score of 9 (1 of 12 samples)

Radical prostatectomy 04/2012; positive margin on bladder neck.

Post-surgery PSA 0.2; external beam radiation summer 2012 (40 treatments).

Hormonal therapy (Lupron) 08/2012-3/2016.

Stopped hormonal therapy 03/2016. PSA now 0.9 and climbing Jan 2017. Urologist tells me that cancer is incurable.

Appointment at MD Anderson Cancer Center (Houston, TX, USA) March 2017 for second opinion on next steps. Usual next steps in USA are: Casodex (to shut down adrenal gland production of testosterone) along with renewed Lupron shots every 6 months; when these therapies are no longer effective (in about 3-5 more years) Extandi or Zytega ("designer" drugs; US $9,000/month); then immunotherapy infusion; finally chemotherapy.

I am a 61 year old man, 5 years after diagnosis and treatment, looking for a cure. To help myself, my family, and other men. MD Anderson: here I come.

I am now almost two years post-Lupron shots. I am still on a "Lupron holiday." My PSA has been increasing an average of 0.2 per quarter. It is now 1.8 ng/ml. I have been to MD Anderson twice and my oncologist there agrees with my urologist: stay the course until my PSA hits 2.5.

MD Anderson offers no clinical studies for those of us that have a Gleason of 9, have had a radical prostatectomy, and have had radiation. All further treatment options seem to require my PSA to hit 2.5 again. That is, I have to get "sicker" before I am candidate for further treatment. I expect to hit that mark by the end of 2018.

An MRI was ordered (unrelated to my PC) in mid-February 2018 by my neurologist to determine if I have re-herniated a disc in my lower back (I have). However, this same MRI revealed two abnormal lymph nodes in my abdominal area. Within 6 hours my urologist ordered a CT scan with contrast. He called me that evening with the news that I have multiple abnormal lymph nodes in the abdomen.

I don't know what this means. My urologist told me to enjoy my vacation because anything we do can wait 4 weeks without adversely affecting outcomes.

A PET scan with a new nuclear imaging agent called Axumin was completed 10 days ago. This scan can show exactly where the PC is in the body. I now know that the PC is back in the cavity where my prostate used to be and it has metastasized to 5 or 6 abdominal lymph nodes and the L5 vertebrae in my lower back.

after consulting with the urologist and an oncologist the decision was made to do the Taxotere regimen and restart ADT. The next step, immediately following Taxotere will be to start abiraterone.

PSA down to 0.2 after 3 rounds of Taxotere. Also Eligard (ADT) every three months. Prolia shot to help prevent osteoporosis.

9/4/2018 PSA=0.13

9/14/2018 released by MO after 6 rounds of Taxotere chemotherapy.

Next step: start abiraterone. I am waiting for a recommendation for a clinical trial that will add a PARP inhibitor to the Zytiga.

After Taxotere chemotherapy (May-Sept 2018) my PSA never reached undetectable. A PET/CT with Axumin in October 2018 revealed several lymph nodes that had become smaller, but were still mets. The L5 vertebrae is also a concern. I had 26 EBRT (radiation) treatments in January 2019 to target these areas, whick are just outside the region irradiated in 2012. I chose EBRT over SBRT with the hope to not have to return for more radiation anytime soon.

I remain on Eligard (ADT) but have not started abiraterone yet.

In July 2019 my PSA started to rise again, with a doubling time of 3 months. The current value is 0.7. Being asymptomatic and having a very low tumor burden I am now undergoing Provenge immunotherapy Set-Oct 2019. The next PET/CT with Axumin is in early November, followed by a consultation at MD Anderson Cancer Center in Houston.

Nov. 2019: a biopsy of my current tumor indicates that I have the genetic markers to qualify for a Phase II clinical trial being led by my research oncologist at MD Anderson Cancer Center in Houston. Weekly blood tests are needex to determine when my PSA level hits 2.0. At this point I will start my treatment.

I knew the next step for me in late 2019 was to try a second-generation drug such as abiraterone, and I searched for a clinical trial that included it. I started at MD Anderson Cancer Center in Houston and got 6 months out of the combo of abiraterone and apalutamide before my PSA started rising again. Stopped these drugs in Oct 2021 and on Dec 2021 enrolled in what was said to be the "hottest clinical trial for men with metastatic, castrate resistant prostate cancer." It was an immunotherapy trial involving the Amgen "BiTE" drugs. Unfortunately I was one of the approximately 50% of men who got no benefit and after three months I was removed from this trial. (Scientists are trying to determine why some men have a durable response even go off of ADT and others like me do not respond). During the required "washout period in April 2022 I developed tumors in my brain, liver, lungs and my bladder tumor grew. Gamma knife took care of the brain tumors and in June I started on my current (3rd) trial of a drug first used for breast cancer patients. My PSA dropped from a high of 60 to the current 14.1.

Bob's e-mail address is: mustang_6789 AT yahoo.com (replace "AT" with "@")