Just found out another side effect of prostate cancer is loss of taste or food starting to taste metallic. I don’t have the metallic taste issue, yet, but my sense of taste is so diminished that eating is more about sustenance than enjoyment. Still, there are times where food tastes very good. I’m really appreciative when that happens.
Healthline has named YAPCaB as one of the best 11 prostate cancer blogs in 2016. I am humbled and honored by this recognition (http://www.healthline.com/health/prostate-cancer/best-blogs-of-the-year). I think the reason the blog made it was the fact we “discuss the effects of cancer that are sometimes ignored, including those that are emotional and psychological.”
I hope you all feel it’s an accurate portrayal, as it is one of my primary goals. I decided my privacy wasn’t as important as letting other cancer suffers know that they’re not the only ones going thru all this craziness.
I went to my last oncologist visit full of trepidation. At the visit prior my PSA was 27.5 and was increasing at an increasing rate. Much to everyone’s surprise, this time it came back at 28.1, just a 0.6 increase. I don’t understand the underlying mechanism at all and the oncologist said he didn’t either. Prostate cancer and PSA activity is a bit of a mystery. Some of the treatments that have been shown to increase lifespan also increase PSA. Whatever is going on I was very happy.
That feeling lasted a few hours and then I realized I still have terminal prostate cancer. Perhaps I’ve bought a few weeks, maybe a month, but I’m still likely to die decades before my time. It hit me that maybe I’m still in denial of a sort. I’m not grateful for each day I have; it’s as if I expect to live those extra decades.
If I’m right about this, I don’t know when it will hit me: the switch to zytiga, onset of bone pain, no longer being able to drive, etc. I think the driving thing will be a watershed event regardless. I love to drive. Just a few weeks ago my car club sponsored a drive thru the back roads of Texas. I broke 100 MPH 5 times and maxed out at 112 MPH. It was great.Losing the ability to drive will be crushing, but I’m sure there will be a time where the need for opiates to control the bone pain outweighs being able to drive. I just hope it’s a long time from now.
Saw my oncologist not too long ago. My PSA was at 27.5. The good news is this is below my reading as far back as October. The bad news is it is increasing at an increasing rate. Unless I get a dramatic drop, which no one expects, in short order my PSA will hit 50. That’s the point at which my treatment regimen will shift to adding zytiga. In clinical trials its been shown to increase lifespan an average of 4-5 months.
I’m currently considered “castrate resistant” which means the lupron and casodex are failing. The prostate cancer is now able to manufacture its food, testosterone, on its own. Zytiga interferes with this process for “awhile”.
Statistically, I have somewhere between 2-3 years to live on average. I also have two other options I can add – Provenge and Xiofigo, which each extend life 2-3 months on average.
I thought getting to this point of being castrate resistant would induce major panic attacks. That hasn’t really been the case. I did have panic attacks the first couple weeks at night, but they weren’t terrible. In some sense I’m relieved. I’d been dreading the time when the lupron would fail, now it’s over and I can get along with my life and death.
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.
Went to the oncologist today for my monthly PSA readout and Lupron injection. My PSA was 14.7!? That’s less than half of what it was last month. The oncologist was at a loss to explain what caused it, but he thinks it’s a valid result. He claims they rarely have lab issues with PSA measurement. The only thing I’ve done differently is to start drinking pomegranate juice, which is supposed to slow PSA doubling time. Maybe it’s really the case it’s real and will hold up. The oncologist cautioned me that it might jump back up, but he’s hopeful. If it does hold, it probably means months more for me.
We also decided to switch to four month injections from the one month I’ve been on. My next visit to the oncologist is now two months up from the usual one month.
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.