Toward the end of August 2006, I was kind of down. My long series of successes with Hormone Blockade seemed to be coming to an end, and the results with GM-CSF were not what I had been hoping for. I was not really looking forward to the next step: chemotherapy. I also was thinking about volunteering for a clinical trial involving chemo (docetaxol) and a new experimental drug called perifosine. So when I visited UCSF on August 28th, I was a bit surprised by Dr. Ryan's enthusiasm. But first, let's step back a couple of months...
Dr. Ryan's Diagram
About May or June of 2006 a couple of men in my support group were talking excitedly about a new clinical trial at UCSF, involving a drug with the tongue-twisting name "abiraterone acetate." As I understood it, this was supposed to be a new replacement for ketoconazole, with fewer side effects. One of the men had already failed ketoconazole, but was very hopeful that this new drug would work. I was a bit perplexed: if you were no longer helped by keto, then why would this stuff which seemed to do the same thing, be of any use? My impression was that men failed keto because their cancer cells became totally free of any dependence on testosterone, so cutting the testosterone down to zero didn't help any more. Now we jump back to August 28th...
More or less out of the clear blue sky Dr. Ryan pulled out a stack of papers, and said "We'd like to sign you up for the Abiraterone study." I was more than a bit surprized by this sudden development, and my first question was "But if I no longer can benefit from ketoconazole, how in the world can this stuff do me any good?" Needless to say, I was about to learn something! One thing I really like about Dr. Ryan is that he doesn't "talk down" to me. Here is a guy who probably knows as much as anybody on the planet about the intricacies of hormones as they relate to prostate cancer, and he is willing to give me a quick lesson in the endocrinology of the adrenal glands.
His comments could be divided into two parts: A) Why did keto fail, and B) Why will Abiraterone work. First, he explained, ketoconazole doesn't fail because the cancer cells no longer need testosterone: it fails because the body's chemistry figures out how to make the ketoconazole go away, and the adrenal glands begin to produce the testosterone precursors again. Next, Abiraterone uses a completely different mechanism to stop the production of testosterone precursors. Not only that, but it is much more selective about how it accomplishes its task, and doesn't affect the other hormones produced by the adrenals so much. At that point he drew a little diagram to illustrate his point. I'm not going to try to explain it, but I was pretty amazed that he drew the whole thing from memory in about ten seconds! The bottom line of the whole thing is that Abiraterone is able to shut off the production of things with ten syllable names, like "androstenedione" that get turned into testosterone by enzymes in the cancer cells.
After that explanation I was happy to sign up for the Abiraterone clinical trial, and since my PSA was rapidly heading toward the stratosphere, it seemed none too soon! So for the second time I was going to further the cause of medical science and, hopefully get at least a few months more of low PSA. My next appointment was set and I went home a relatively happy camper.
Janina
My next visit was the end of September, and I discovered that I was in for a very busy couple of weeks. I was to have CT scans, a bone scan, chest X-ray, EKG, many, many lab tests, and a physical. Fortunately, I also got a "guardian angel" in the form of a very nice young lady named Janina. I was soon to discover that this person seemed never to take a day off, and must work practically around the clock! She might call me at eight AM and then again at seven PM, and when I had to show up at six-thirty AM to check into the hospital for some of the testing, there she was. And a good thing, too, because I never would have kept all of the appointments and time schedules straight by myself!
My first official activity for the trial, or "study" as they like to call it, was to report to the "big" UCSF hospital at 505 Parnassus at 6:30 AM one dark Friday morning. Fortunately, the folks who make the drug were kind enough to pay for a hotel room, so I didn't have to drive up to the city in the middle of the night. Sitting in the admitting office among the crowd of patients, it occured to me that I had never before actually been admitted to a hospital as an "in-patient." Well now I would see what it was like. After a rather brief session with the admitting person (no insurance cards needed this time!) I was sent upstairs to the twelfth floor. Yes, I said the twelfth floor - this really is a BIG hospital!
Things were pretty quiet when I arrived at my room. A few minutes later, a friendly gentleman by the name of Richard walked in and introduced himself as my roommate. He had come all the way from Placerville, so I guess I can't complain too much about having to drive a long distance! As we both settled in, things began to liven up. There was now a steady stream of nurses, and various other people taking our temperature, blood pressure, urine samples, orders for meals, blood samples and on and on. Interestingly, we had both brought portable DVD players, and had a long discussion about our favorite movies. However, so much was going on that it took me almost the whole day to watch Mozart's The Magic Flute.
Abiraterone Acetate
But finally we got a long lecture from our Nurse Practitioner, Tammy, about the possible side effects of the medication, and without much ceremony, we were each given two rather ordinary looking pills to swallow. I was actually a little disappointed - I thought they would at least make us sign some kind of non-disclosure agreement. But I guess that only happens in the movies... From that point on, it was mostly just blood pressure, blood samples and more of the same. I got a little worried when they started getting some weird reading for my blood pressure. First it would be very low, then the next time it was very high. But the nurse just kind of laughed it off, so I never got too worried.
Finally, after a long day and a night in the hospital, we were sent out to entertain ourselves until the next morning. I was put up in an older but nice hotel in the financial district. After checking in I took Richard's advice and went over to the new De Young Museum in Golden Gate Park. I had fond memories of the old museum from years ago, and was looking forward to an enjoyable experience. No trouble parking, and because they were celebrating their first anniversay, I got in free. The place certainly wasn't like the old museum. The old place had a kind of "turn of the century" look to it, probably because it was built shortly after the 1906 earthquake. The new museum looked like something from the set of a sci-fi movie. Well, OK, let's see what the place looks like inside. There was supposed to be an exhibit of quilts made in a small Georgia town, which I thought might be kind of nice to see. Unfortunately these quilts looked like they were made by people on drugs! I never saw such crazy looking stuff. Then I noticed that most of the people who were about my age were walking around with either puzzled or disgusted expressions. Hmm... maybe quilting isn't like it used to be.
Well, back to the hotel, and it was pretty much time for dinner. I figured that since this hotel was close to the financial district, there must be lots and lots of great restaurants around, right? So I walked outside and started to investigate. After covering about five square blocks, I had found McDonald's, Taco Bell, Burger King, KFC, and Popeye's. Was I really in San Francisco? Or had I somehow passed through a wormhole and wound up in Des Moines? Finally, as my feet were just about to give out I found a Chevy's. "Well, that will have to do." I thought, and ambled in. After a mediocre but filling meal, I walked out and as soon as I had rounded the first corner, lo and behold, there was Trader Vic's complete with uniformed parking attendant and Tiki torches! Well, next time I promise I will check the listings on Yahoo before I go out!
We finally got back to UCSF on Sunday morning, and guess what - more blood pressures, blood samples, etc. Of course, need I mention that the ever-present Janina was there to see us off and collect our parking receipts. I hope they give her a day off sometime!
That was it until the next Friday, when we made another trip up to UCSF. This time, not only did I get my blood pressure taken and blood donated, but I actually got a month's supply of Abiraterone. I felt like I had just graduated and gotten my diploma! So I now will be taking the pills and my blood pressure every day, and will report back to the folks at UCSF to get my PSA once a week for the next month. If things go well, which I hope they do, this could last up to a year. Stay tuned!
Now fast forward to one week later, October 26th, to be exact. I was due back at UCSF for my first checkup after going on Abiraterone. My expectations at this point were very minimal, since the blood draw I had last week, and whose results I would see today were only after one dose of the study drug. So after waiting a few minutes in the exam room I was greeted by the ever-present Janina. She carried with her my chart, and on top of it was a copy of the printout for the lab work from last week. Without much ado she handed it to me. Of course, I quickly looked at the all important PSA... and almost fell out of my chair! The last previous PSA had been over 18, and this one was 15.5. My first thought was that this couldn't be right - how could only one dose of the drug possibly make my PSA drop three points? But no, this really was my labs from October 20th. Everything from that point on was just a blur. I think I hugged everybody in sight. Fortunately, I wasn't out on Divisidero Street! I finally sort of came to my senses while having lunch with my ex-roommate Richard. He had received similar news, and was pretty happy, too.
And it didn't stop there. The next week, on November 2nd, I returned for my next weekly checkup. More wonderful news - on October 26th my PSA was 10.9! This seemed almost too good to be true. But there it was! I am pretty good at accepting my lot in life, but unless you have been in my shoes, you don't know how someone feels when they see their PSA going up as fast as mine was a few weeks earlier. To put it simply, I wasn't exactly happy. But that is all gone now! This is like being on the Titanic, and seeing the iceberg suddenly melt before my eyes. Of course how long this amazing result lasts remains to be seen, but for now, life is good...
