First, I’d like to say that I’ve been reading posts for several months and have learned so much from you all. I take my dad to all of his doctor’s appointments and treatments. I work in the medical center across the street from both MD Anderson and Methodist Hospital. So, not going isn’t an option.
I’m on this site in hopes of getting a better understanding of advanced prostate cancer as well as making it easier on my dad. He’s always been such a healthy, super energetic, positive man, but I see the sparkle in his eyes dimming.
My dad is 64 and was diagnosed with stage IV Metastatic prostate cancer 1/17. The only reason he went in to get tested was because 2 of his 4 brothers have prostate cancer. He had additional testing and it was negative for mutations in the BRCA1 and BRCA2. I’ll have to pull up the results to see if it showed anything for HOXB13. His Gleason was 10, starting PSA of 121, spread to upper left femur and parts of ischium. We began with Lupron (every 3 months) and XGEVA monthly. His PSA dropped down to 13 and we were so happy and thankful. Unfortunately, his PSA levels began climbing. I had read about how great Zytiga was and I wanted my dad to try it. I went on to the Zytiga Johnson & Johnson assistance program website (amazing people just a lot of daily following up) and were approved for assistance meaning ZERO dollars needed for medicine. (Aetna cancelled my dad’s insurance 12/31/16 (he had a biopsy and received Gleason scores before Christmas) him and my mother had that insurance plan for over 7 years and bam cancelled 12/31/16. Basically, we paid out of pocket for all treatments for the entire year of 2017 bc we had missed the timeline of signing up for an insurance carrier who was able to be seen in Methodist or Md Anderson. We chose Methodist bc it was 10K to start treatment vs MD Anderson which was 2 maybe 3 times more. Anyway, he began zytiga 11/17 and after 3 months have had to stop zytiga as it’s not doing what we hoped it would. My dad’s PSA never dropped while on Zytiga. His PSA is currently 136 the highest it’s ever been. He will begin taxotere 3/2 (every 3 weeks, 6 cycles). Treatment will continue at Methodist Hospital in Houston. I'm writing in hopes of receiving advice/tips for my dad while he’s doing this, what to expect and lookout for. My dad doesn’t complain at all. I just know he’s losing hope which breaks my heart. Yesterday, my dad told the doctor that he knows/understands that we all will one day die, but he isn’t ready to do so.
Thank you for reading.