Join Date: Nov 2007
Location: Annandale, VA, USA
Re: PSA Relapse Following Salvage Radiotherapy, can you help?
John may already have replied, but I thought you might like a second perspective on some points I think I've not mentioned before. I found it very useful and reassuring to learn different experiences of men on triple blockade when I was starting out. I'll be very brief where I think you've already seen what my experience has been.
Originally Posted by Baptista
Thank you very much for the reply. ...
In regards to your treatment, could you please answer to these questions;
1) When and Why did you start hormonal therapy?
I've just posted a long response to Gleason 9 that covers single cycle intermittent blockade as well as multi cycle. While many patients have done fine with just one cycle of thirteen months to a year and a half, some of us with challenging cases take longer. With the goal of achieving a PSA of <0.05 and staying at that low level for a year, my first cycle of triple blockade took 31 months. That's extraordinarily long, but my case was extraordinarily challenging, with the PSA having to drop all the way from 113.6. I was then off therapy for 31 months!
2) How long were the cycles?
My second cycle of full triple therapy, started when my PSA reached about 10, took 19 months. At that point the guidance had eased a bit, and, following advice at a conference from Dr. Mark Scholz, my goal was to just reach <0.05 and then go off therapy, without staying for a year, which is what I did. I was off therapy for 19 months. I substantially recovered from side effects in three to four months, and I was fully recovered by six months. That's been the pattern this time and the middle time.
My third cycle took 19 months, and I have now been off for 5 months with my last PSA at 0.11 and slowly rising, as expected.
I'll leave that one to John.
3) What was the third drug you start taking from Jun 2009?
| My protocol, after my treatment evolved to triple blockade within the first nine months, was Lupron, Casodex (now bicalutamide and much less expensive) 50 mg, plus finasteride at 5 mg, later increased to 10 mg. I was on Fosamax to aid bone mineral density, and later on a statin drug (simvastatin), both to cope with side effects of blockade.
4) Were you been given any detailed protocol (doses, etc) by Myers to be followed?
A vital point is that some of us are different enough from the norm that we may need more frequent treatment than usual with the LHRH-agonist, or we may need a higher dose of bicalutamide, or we may need Avodart versus finasteride, or vice versa. The point is that it is vital that at least both testosterone and DHT be tested to see how the patient is responding, and then, if the response is good, every now and then. Other tests, such as for LH (leutinizing hormone), may also be needed.
It's nice to have an expert managing your treatment. Short of that, the experts have published books and newsletters that provide guidance. While my medical oncologist is a highly educated, highly intelligent doctor, I have helped educate him about triple blockade. That's a role many of us can handle, if needed, once we become empowered patients.
5) Who is directing you to take what and when for the side effects drugs?
| In addition to ultrasensitive PSA tests (sensitive down to <0.01), testosterone tests occasionally, and DHT tests occasionally, liver function tests are important to make sure the patient handles the bicalutamide adequately (can be discountinued when that is verified). My oncologist also routinely has me tested for a comprehensive metabolic panel and a complete blood count, and he gives me a focused physical exam every four months. I have more-or-less annual bone mineral density scans to monitor bone density, and I also have occasional vitamin D3 tests as that is related to bone density and to prostate cancer. Of course, I've had no medical training, so please don't regard this as authoritative. Also, individual patients would probably need additional tests that were tailored to their circumstances. Nonetheless, I think this set of tests would cover most patients.
6) What tests are you required taking?
| I can't speak for John, but please ask all the questions you want. There are enough twists and turns that you cannot learn it all at once. It seems very clear to me now, but it took a while before I got a grasp of the main points.
I hope I did not become “heavy” with so many questions.
I appreciate your helping me.