THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
In September 2011, I was 54 years old and in the prime of my life and career, also in the best shape of my life. I had no symptoms other than minor lower back pain after extended workouts and a slight increase in nighttime urination. I did feel dizzy after extended cardiovascular exercise. I went in for routine surgery to repair a hernia and was unable to void after the operation. This led to a PSA test -- 555 ng/ml followed by a retest four days later of 906 ng/ml. Bone scans showed extensive metastases to skull, right mandible, anterior and posterior ribs, left an right humerus, thoracolumbar spine, pelvis, rignt and left femurs. CT scan showed some involvement of lymph nodes, bladder, and possibly the lungs. In the words of my medical team, it was very aggressive and about as widespread as they had ever seen.
My initial choice for treatment was Degarelix. The medical team felt Degarelix would lower PSA immediately without the PSA spike associated with other ADT options. It worked pretty well, taking me from 906 ng/ml to a nadir of 2.4 ng/ml between SEP '11 and MAR '12. Casodex was added in JAN '12 when PSA regression stalled at 11 ng/ml. I also worked with my medical team to get approval to begin a Provenge regimen beginning in NOV '11. I took the Provenge treatment in NOV-DEC '11. I continued to work full time during this period exercising extensively to counteract the effects of the ADT on muscle loss.
ADT began to fail in APR '12 and PSA began to rise from 2.4 ng/ml doubling nearly every month. In JUL '12, my team added Abiraterone and shifted me from Degarelix to Zoladex. The Degarelix injections were painful and my team felt I could get the same effect of testosterone suppression with a less painful shot every 90 days. The Abiraterone failed in about 60 days (JUL-AUG '12), initially lowering my PSA by about 15 points. By SEP '12, my PSA had risen to 66 ng/ml was and was continuing to rise. At this point, I decided to seek a clinical trial. In regard to my health, I continued to work my high stress, high profile job and exercised regularly. The side effects were really minimal and I decided to keep my diagnosis and treatment a private matter sharing information with only a small number of people.
In SEP '12, I decided to participate in a Phase I clinical trial of XL184 (Cabozanitinib) and Docetaxel. I chose this treatment because I felt my situation required a very aggressive approach and I believed I could handle these two toxic treatments due to my excellent overall health. This would buy time for the development of other treatment options. Despite an initial PSA jump from the 60s to 120s, my overall level of metastases lowered significantly. I also continue to take Zoladex, Xgeva and prednisone.
As of DEC '14, my PSA has now risen to 326 ng/ml while my Alk Phos remains near its nadir of 57 U/L down from over 600 U/L at diagnosis. However, there has been no progression of the disease evident in either bone or CT scans. My medical team no longer feels that my PSA is a good marker for my disease due to possible interaction with the XL184.
I have tolerated 39 rounds of chemotherapy very well with only two three-week vacations over the 28 months. I feel good most of the time and continue a very active life. Exercise is the key to dealing with the side effects of this regimen. I did decide to retire in MAR '14 to spend more time with my family and pursue some other life goals. However, I continue to work as a consultant, board member, and speaker. My intent is to continue this trial until there is physical evidence that the cancer is progressing.
Just completed Cycle 47 of chemo and 32 months on the trial and my disease remains stable. CT and Bone Scans show physical evidence of the disease is at its lowest level. My PSA is all over the place now at 509 ng/ml. I feel good and continue a busy calendar. My medical team discounts the PSA and focuses on the physical evidence of the scans.
Just completed round 50 of my clinical trial (XL184 and Docetaxel). My team decided I should take a chemo vacation to better enjoy the summer activities and rebuild my strength and fitness. I have skipped last 2 three week chemo cycles, but remain on XL184. PSA is stable and I feel good. Some dental issues with a root canal have caused them to withhold XGEVA as well. September will mark three years in this trial.
Finished Cycle #55 of Docetaxel and XL184, that means over 39 months now in this trial. Following my summer 6 week chemo vacation, we saw several lymph nodes become enlarged and a steep jump in PSA (up to 812 ng/ml). I am back on the full regimen now and PSA has dropped and scans remain stable. Staying on current trial, but looking hard at genomic testing to qualify for an Olaparib trial or new Immuno trials. Continue to feel good and remain active.
I am completing my 57th round (39 months) of a clinical trial combining Docetaxel and Cabozanitinib. My team is having me skip alternating treatments of chemo and cabo to allow a dental infection to heal. This is no big deal. PSA and bone scans remain stable and I continue to feel pretty good. I am currently having my original prostate cores sequenced for DNA. This will determine my eligibility for some new trials. Also participating in a new scanning trial that looks for evidence of a protein related to prostate cancer. First trial scans told us nothing we didn't know from my usual bone, ct, and. sodium fluoride scans. All is well and I'm enjoying the holidays.
After the holidays I went in for staging. CT, Bone, and MRI all showed new growth of disease along with PSA increase to 1013ng/ml. Based on proximity of tumors to spine, we decided to zap two areas with radiation and begin use of the drug enzalutimide. After effects of radiation were more painful than anticipated enzalutimide is a breeze. Working now to get full mobility back on stairs and hills. Also, continue to wait for new clinical trials.
PSA continued to rise with associated symptoms (pain in pelvis, hips, long bones). In June, opted to add Radium 223 to current regimen of zoladex, enzalutimide, and spot radiation. Scans show cancer is clear of organs and soft tissue, but growing in bones. After validating all requirements for bone marrow and blood health, took Radium 223 injection #1 of 6 on Friday. Overall, I am experiencing decreased pain, but increased focal pain in right knee and shoulder. Treating with steroids and low level pain killers.
Expect positive results, but reviewing options after this regimen. We are looking at advanced chemo or a clinical trial combing a PARP inhibitor and Check Point Inhibitor. Enjoying the summer and the great weather on the east coast so far!
Bob's e-mail address is: usa201st AT gmail.com (replace "AT" with "@")
NOTE: Bob has not updated his story for more than 15 months, so you may not receive any response from him.