Met with my oncologist today. The results of my last PSA test came in – a little over 50. Bad news. At this point I’m likely to start a on a new drug, either Zytiga or Xtandi. First, I go off Casodex, and we see if I’m in the 20% of men whose PSA drops (for unknown reasons) after coming off Casodex. If so, we’ll wait until it rises again.
Note there’s nothing magic about 50. The accepted standard of care is that Lupron/Casodex are in failure after the PSA rises for three straight months. By that measure, I have already entered failure. My treatment plan has been different from the norm, because I’ve had so much trouble with depression.
Due to side effects, I’m leaning towards the Xtandi when the time comes.
I’m not sure what I thought I’d feel like when I reached this point. Maybe relief, because I no longer had to deal with the anticipation. Instead I feel mostly nothing. It seems like just another step on the path to death. I don’t mean that in a morose way. Death seems more and more like a natural part of life to me.
Went to the oncologist a few days ago. This was my two month checkup on my PSA. Recall that I had a big, surprisingly good drop in my PSA the time before.
This time my PSA was about 18.5. Still well below what it was months before, but, importantly, more than it was 2 months ago. So I’m still in the “Lupron has failed” category. That’s called castration resistant – horrible name.
Since Lupron (and Casodex) are used in prostrate cancer to stop or inhibit the use of testosterone, they’re the chemical equivalent of castration. Hence, once they stop working, one becomes castration resistant.
The bottom line is being in this category I have, on average, less than two years to live. My PSA levels are already high relative to when most men get classified into this category, so that’s not good. But I’m relatively young and in relatively good health, which works in my favor. Who knows which side my death will fall on.
I do know this transition to castration resistance has had a huge impact on my life. I find it hard to go to sleep. It’s as if I allow myself to go to sleep, I’ll lose a day, and then I’ll be one day closer to death. So now my schedule is totally hosed. I collapse around 5-7 in the morning and sleep until the afternoon, often late afternoon.
I am finding living on this schedule is very difficult indeed. I’ve tried anti-anxiety drugs to get control of this, but that’s been a bust. I’m going to work with my doctor and wife to try to find a way out of this hell.
Dying isn’t as easy as I thought it would be.
Met with the oncologist today. My PSA was up about 10% into the mid 30s. He told me that means the Lupron is slowly failing, which is good. He wants to keep me on Lupron (and Casodex) until the month to month jumps hit 20% or my PSA exceeds 50.
At that time we’ll add Zytiga to the regimen and drop the casodex. I thought that I’d be done with Lupron, but that’s not the case. I’ll still get Lupron every month.
I’m a little concerned about going off the casodex, since I feel it was a major factor in controlling the depression. He thinks I just got used to the Lupron. At any rate, if the depression returns, I’ll propose we add casodex back to the mix and see what happens.
I also asked about travel next year, specifically in about seven months. He said there shouldn’t be any problems making the trip, good news!
I’ve started to come to terms with my death likely in under two years. The panic attacks are largely gone and the anxiety is much ore manageable. Interestingly enough, the anxiety and panic is almost always the worst right before I go to sleep. I think I just don’t want the day to end and to officially one day closer to death, but who knows.
Met with the oncologist about a week and a half ago to check up on my PSA. As expected, it went up. I am now officially in a category called castration resistant. What this means is I have, on average, less than 2 years to live. There’s nothing quite like knowing this. I felt like I was dead, but yet still alive to cry and grieve. I’m slowly working my way thru this. Staying in the present is the key. Wondering if my next birthday/Xmas will be my last is bad news. It’s hard to stay in the present, but I’m getting better with the help of my wife.
Just got back from the oncologist. I got mixed/negative news. My PSA is up slightly from before. If it’s up three times in a row, it’s an indicator that the hormone treatment is failing. When that happens, on average, survival times are less than two years.
In the lead up to this meeting I was a mess. My scanxiety was thru the roof starting back around June 11, when I got the last injection. I had no appetite and lost 5 pounds (not all bad). My energy levels were ridiculously low. The muscles in my back pulsed into and out of spasm. Going to sleep was hard to come by. I made frequent use of xanax and gin and tonics. The oncologist thinks a lot of this is due to the lupron and casodex and how they affect me. I’m off both of them for two weeks starting today and we revisit their use later. I meet with my GP later this week to try to get control of the anxiety and a better handle on what’s causing my lack of energy (he thinks it might be related to my heart attack).