It looks like my tremendous luck with Lupron/Casodex is coming to an end. After one year of dramatic drops, my PSA started to rise. Six weeks ago, they took me off the Casodex to see if Casodex withdrawal would drive down the PSA, but the PSA went up again from 1.6 to 3.79. Although the term was not used, it seems I've become castrate resistant.
Anyway, the next step for me is either XTandi or Zytgia. I haven't been through chemotherapy, but oddly enough as I was sitting with my oncologist in the exam room, she got the alert on her smart phone that the FDA have approved of Zytiga in a pre-chemo setting. The timing couldn't have been better.
By the end of this week, she's going to see if she can get insurance approval for either one or the other. Her preference would be XTandi but if Zytiga is covered by insurance then it may be that. It feels too much like the tossing of a coin if you ask me, but I honestly don't know which one would be better for me.
I'm getting new bone scans next week to see if there is tumor progression. I'm already starting to feel some new bone ache in the hips and back, but that doesn't necessarily have to do with cancer progression.
I'm very depressed about this. I was hoping my vacation on lupron would have lasted longer to benefit from the on-going breakthroughs and clinical trials. Like many of you, I'm finding ways to be optimistic. I know there are many options and many drugs open for me in the future, but I still have a dread feeling in me as if I have just been diagnosed for the first time. All of last night I was in shock and hardly got any sleep.
But I have to ask for an opinion. They took me off the casodex after two months of my PSA rising. The rise from my nadir was less than a single point, so I was always wondering if taking me off the casodex to provoke a withdrawal reaction was premature. What if the big rise in my PSA over the last six weeks from 1.6 to 3.79 was due to discontinuing the casadex? They are now saying they won't put me back on it because it looks like I'm castrate resistant (although that term was NOT used).
On top of everything else, I have the BRCA2 mutation which means I may have less natural defenses against tumor growth. There are clinical trials for BRCA2 which I'm looking into to, but being on either Zytiga or XTandi may exclude me.
The assumption is that my PCa is very aggressive and the short period that the Lupron worked is "not a good sign" and may mean that other androgen based therapies may not work as well for me as other men.
Again, I kind of expected this from the beginning, and it's common knowledge that ADT doesn't last forever, but it always feels horrible when it actually happens.
There's still hope. I haven't started anything new yet, I'm getting scans next week and another PSA in three weeks, but for now I'm very down.
What comforts me is that many of you are doing well or have done well on Zytiga and XTandi, and there's hope either one could work well for me. What bothers me is that my PCa may be so aggressive that it's possible that neither will work for very long.
Diagnosed 9/14/2011; Age 47; PSA 5,000+
Metastatic Stage 4, spread to entire skeleton w/femur fracture
Current therapy: Lupron/Casodex/Aredia
June 4, 2012: PSA 2.2, doing well with little discomfort
June 27, 2012: PSA 1.42
July 24, 2012: PSA 0.69 !!!!!
September 25, 2012: PSA 1.2 (Oops)
October 11, 2012 PSA 1.4 (not good)
December 10, 2012 PSA 3.79 (mCRPC)