PC SPES One Man's Story
BY BOB ANDERSON ©
Raleigh, N.C. July 19, 2001: Having been off the PC-SPES list for a time I felt this week a little like I had awakened in Hyde Park in the midst of the bombing of London.
After listening for awhile I thought I would share my experience for what it is worth.
Last year after a year on PC SPES - and I was not hormone refractory - my PSA bounced. After steadily decreasing to 0.04 it began to rise. I had believed (wishful thinking?) in the myth that no one had ever become refractory on PC SPES. So I spent too much time tweaking the dose, adding interesting things, questioning the formulation.... No support from anyone on a change in formulation causing my reversed fortunes. Couldn't even get a call back from BotanicLab. (Mario and Taras did their best, but no answers).
Looking back at my digest, I recall tracing all the Lot changes and hoping that the new batch would reverse things. Damn, I loved PC SPES. I felt good, I slept well, lots of energy, boobs not too sore or too big, really a minor problem.
I finally confronted the fact that I had become refractory to PC SPES. I tried Lupron and triple dose Casodex, no dice -- refractory to them as well. Tried high dose ketaconazole (HDK), even went up to 1800 mg a day, slowed the bugger down, but only slightly.
So I wound up on a clinical chemo trial for 6 months, which took my PSA from 32 to 4 and my alkaline phos from 700 to 110. Side effects unpleasant but manageable. And certainly better than the alternative by a wide margin.
That brings us to this April. I went off chemo to give the body a chance to recover, fully expecting that I would go back on shortly. Then I heard about folks getting another run from PC SPES after some time off; and heard of a possibility that adding SPES to the dose could also get it working. My PSA stayed flat for the first month I was off chemo then jumped quickly to 12.7. I started PC SPES again and SPES, seriously wondering, given all the flap whether I was making a mistake.
So what happened? PSA dropped to 5.4, then to 4.7. This on the lot that doesn't "work"!
So, one man's story ... I don't know how long a run I will get out of this, but I feel great, my energy is back, I have a bone scan that looks like a Christmas tree, but what a blessing to get these couple of months even if I get no more. I will spend two weeks hiking in the White Mountains with my grandson. Life is good. PC SPES is a blessing for me. Not a cure-all. But I will tell you I am damn glad to have it. I would be happy to share my digest with anyone who is interested in enhancing their understanding.
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