THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2021 SO THERE IS NO UPDATE.

Following diagnosis in 01/14 with G8 I opted for RALP; scans had indicated containment in the gland but the high risk G8 directed me to surgery. Post Op (Mar2014) surgeon advised positive margins and ECE into LT nerve bundle. Gleason was upgraded to 9 (4+5). Path was T3aNOMX. Follow up PSA in May was 1.5ng/ml. Consult with Radiation and Medical Oncologists was preceded by a second PSA which had dropped to 0.22ng/ml. Both still advised (1) immediate initiation of hormone therapy and (2) IMRT 6 months following surgery. After consideration, I decided to follow their advice. Had a third post op PSA prior to my first Lupron shot. PSA had dropped to <0.1ng/ml? Commenced IMRT to prostate bed in Sep 2014; 35 sessions at 70 GY. Hormone therapy continued for 9 months (MO Recommendation). All subsequent PSA's on ultra-sensitive scale undetectable until Jan 2016 when PSA fluctuated between detectable and not detectable. In 11/2016 PSA was 0.062 and I have had 4 successive increases with the last (07/2017) at 0.254. Recent bone scan negative for mets.

Health is excellent. Exercise 6/wk, have adopted a mostly vegan diet and have made attempts to maintain positive attitude with meditation. Currently seem to be in a no-mans land of not meeting the AUA definition of a biochemical occurence but headed in that direction. Standard of Care path assuming BCR would be resumption of ADT which I am not looking forward to. I am looking into combining aberaterone with a GnRH if medicare will cover the cost.

I am currently in a very confusing no man's land in regard to a Standard of Care. My situation is enviable in many ways in that after 4 PSA increases following meeting the AUA definition of BCR, and topping out at 0.846 ultra-sensitive, my PSA has dropped first to 0.743 and now, as of June 2018, 0.136. This has occurred without medical treatment; it is perhaps related to diet, exercise, metformen, acupuncture, meditation and exercise regime. My next PSA and some additional blood work will occur this month, Sep 2018.

Reviewing my previous information in the abbreviated format, update should reflect the Gleason score was changed to 9 (4+5) post prostatectomy, stage T3a. Because of a residual PSA of 1.5, adjuvant radiation and 9 months of Lupron followed and ended in 2015. PSA's above undetectable began to appear in 2017 but fluctuated - finally met the definition of BCR in 2018. Joined a clinical trial in 2018 for a DCFPyl scan at the City of Hope in Los Angeles. Scan indicated one suspicious Lymph node in the pelvic region (8mm) = avid compared to the surrounding nodes. Trial team wanted to perform a CT guided biopsy but could not guarantee they would hit the target; that information along with my reasoning that the result would not change my course of treatment decision ended in not continuing with the trial.

My course of treatment decision is being based on PSA readings and doubling time/velocity. I have had a T99 bone scan at the request of my Urologist which showed no mets last month and I am also being followed by an MO. They have agreed with my decision to monitor the PSA kinetics and at some point with continued rise we will initiate ADT; whether to go upfront with a level 2 or just reinitiate level 1 monotherapy is undecided.

Richard's e-mail address is: lrklingbeil AT gmail.com (replace "AT" with "@")

NOTE: Richard has not updated his story for more than 15 months, so you may not receive any response from him.