Saturday, May 4, 2013

Putting on the Brakes

After careful consideration, I've decided that things are moving a little too fast with this whole NIH trial study thing. My wife and I talked it over with my father-in-law and he agreed. They seem to be in an awfully big hurry to get me into the study without a lot of data to go on. The trial information is pretty clear that it's for patients whose current hormone therapy has taken an turn for the worse and is no longer working. They told me that this trial can be taken in parallel with my current treatment regimen. It occurs to me that if the current regimen is no longer working, then what would be the point of continuing it while on the trial? And if it is still working, then how will they know that the results are due to the trial rather than my regular treatment or some combination of the two?

I'm not convinced that is the case with the only indicator being a single increase in PSA. I've talked to several people, both with and without prostate cancer, who have told me that their PSA fluctuates all over the place, that the real concern is the trend line. All subjective indicators point toward my current treatment working. I am feeling better, am able to do more, and my last bone scan showed "overall improvement". I really don't see any evidence that it is not working or that it has taken a turn. I know that they plan to run a series of tests on Monday before trying to get me into it and there is a chance they may say that now is not the time, but I think that I'm going to need some time to digest things and think about it some before agreeing to start the program.

I also have a concern that their eagerness to get me into the trial may be due to my being somewhat of an anomaly for someone with metastatic prostate cancer due to my age and my health. Perhaps they see me as someone more likely to give the trial a positive outcome?

My FIL also recommended holding off until I've had a chance to speak to my oncologist and urologist about it. I've forwarded the information to them, but haven't heard back from either of them yet. I have an appointment with the oncologist on Thursday so I'll be talking to him about it then at the latest. Yesterday I had another MRI, the one that lasts for an hour (imagine being locked in a very small closet and forced to listen to dubstep for an hour), which I had forgotten about. This one was ordered by my radiation oncologist a couple of weeks after I finished my radiation. He wanted to give it a few months for all the carry over to complete and then get this scan for comparison to the previous one so I need to see how those results compare and perhaps talk to him about this study as well.

The bottom line is that while I'm eager to do whatever it takes to get this thing under control, I'm not in a rush to jump into anything. If this trial is right for me, then I want to see hard evidence that it is necessary and have agreement from those responsible for my primary treatment. I do know from all of the doctors and some of my own research that the various treatments for this are somewhat time limited in that eventually they lose their effectiveness as the cancer figures out how to get around them and at some point I will have to switch to another treatment, however I'd like to drag the current treatment out as long as possible as long as it is still working. There's no hurry to switch to another treatment. I understand if they want to get at the cancer as early as possible for maximum effectiveness, but another week or two isn't going to make that much of a difference along those lines. I'm eager to see what the test results show and to share them with my oncologist and urologist and get their opinion. Hopefully they will show that the PSA was just an anomaly and that the current treatment is still working just fine.

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