Hello from the West Coast of the USA. I was initially diagnosed at age 65 about 5 years ago as very metastatic with lots of mets to many bones and lymph nodes. My bone scan lighted up like a Christmas Tree, and my PSA was a ridiculously high 5,006. The systemic treatment with a simple injection to greatly lower Testosterone levels worked very well for me. My bone pains went away and my PSA dropped to as low as 1.0 within several months. I was also given a drug to help keep my bones stronger during treatment (in my case Zometa (zolendronic acid), but it also could have been Xgeva (denosumab)).
Were I treated today, I probably would have been prescribed the same, but perhaps with either early Chemo (docetaxel) or early Zytiga (abiraterone acetate + prednisone), per the more recent results of Clinical Trials that were reported in recent years in the USA and the UK.
The most significant change (other than the pain reduction) was the slow impact of living in a body with a greatly reduced level of Testosterone. I got frequent hot flushes (aka flashes in some parts of the world), a loss of sex drive and desire, some weight gain, and a slow lowering of overall energy and peak strength. Other slow changes involved less frequent erections, a slow shortening of penis size and testicle size, and slow changes to external secondary sexual characteristics of an adult male. Hair on my knuckles and toes slowly went away, along with chest hair, most pubic and groin hair, and chest hair, and underarm hair. My skin also stopped being so oily (and I stopped smelling so much like an old billy goat - Ha. Ha).
The initial treatment work very well for me, for nearly 2 years. During the 3rd year with other consultations/treatments, my PSA eventually went back up again to as high as 95.0. I added the androgen blocker Xtandi (enzalutamide) about 26 months ago. PSA went back down to 1.2, and now, a little over 5 years since original diagnosis is trending upwards again, but still only at 3.1.
I have been very lucky with some biological responses to treatment, so far. My overall quality of life has also been improved by my and my spouse's attending some face-to-face prostate cancer support groups, and some general cancer support groups for advance cancer people and their spouses/caregivers.
For me, about 1/2 of the stress and difficulties, especially during the 1st year after the "incurable Stage IV" diagnosis were mental and emotional, and about 1/2 were in the medical/technical details.
A balanced life, lived mostly in the Present Moment, seems better for me than brooding over the past, or being overly anxious about the future.
Just some thoughts...
Edited by member 21 Jan 2019 at 06:30
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