Briefly: A participant has his immature dendritic cells harvested and the vaccine prepared using them infused two days later on weeks one, three, and five. That completes the treatment phase. Follow-up is by bone scan and/or CT scan about every 8 weeks, depending upon where metastases were found on baseline scans.

After about a year on the program, the blind was broken, and I discovered I had received the placebo, and then enrolled on the secondary trial where I received the real vaccine prepared from my cells that had been frozen and saved. My first bone scan (no CT scans have ever shown soft tissue involvement) following this follow-on (cross-over) treatment phase was on 4/30/03.

On 5/28/03 at a follow up appointment with the trial site's urologist to discuss the bone scan, I asked if he had ever seen anyone on the trial in my situation (i.e., progression after receiving the actual vaccine in a follow-up trial) who then achieves regression or even stability. He answered that he had not. In effect, I was off the trial.

I had a scheduled appointment with my medical oncologist on June 19th at which time we discussed options for my next treatment. (Previous treatments were RRP 5/28/92, hormone therapy '93-'96, 2nd line hormone treatments - aminoglutethimide + cortef 5/97-4/00, and experiments with PC-SPES, GCP/AHCC, and the rife-bare frequency generator. During all this time and to the present I continued with Lupron.)

By the time I had base line tests for the Provenge trial, my PSA had risen to 44.1. Coming out of the follow-up trial, it had risen to 309.1. I suggested to my oncologist that we might re-try the aminoglutethimide + cortef, which had worked for me in the past. Before making any decisions, she wanted to start me on Zometa, which we did. First infusion was on 6/24/03. Because of an intervening vacation, 2nd Zometa infusion was on 8/12/03, at which time the PSA had dropped to 190.2.

At that time I re-started the aminoglutethimide + cortef, which has continued from then on, along with 3-mo Lupron shots and monthly Zometa infusions.

My PSA has bounced around quite a bit over this time:

Despite these high numbers, I still feel physically OK. I do have metastases, but cannot identify any pain or discomfort caused by them. The only pain medication I take is Celebrex, and because of a goof-up I was without it for about 3 days. I did experience some minor pain during this time, but it went away as soon as I was able to take the Celebrex again, making me think it was arthritic in origin rather than from PCa.

The impression reported on my latest bone scan in January was of "fairly stable metastatic disease."

So, something's going on, but my QOL is pretty darn good, all things considered. I'm able to exercise regularly with tennis and table tennis, my appetite is (too) good, and my GP said today that all my vital signs are excellent.

Over the years I have avoided radiation, and I'm hoping to postpone chemo for as long as possible. After all, maybe one of the trials on immune system, gene, anti-angiogenesis, etc. therapies will prove out and provide, if not a cure, at least positive control with few or no side effects. (BTW, I had zero side effects from the Provenge vaccine)

/jack

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Jack M. Beaven

Dayton, Ohio 12 year PCa survivor

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