I had an appointment with my general doctor yesterday. We talked a bit about my diagnosis (7 months ago). I said it had been quite stressful, getting a terminal diagnosis. He replied that I needn’t use the term terminal. He has a patient still going after being diagnosed, metastatic, 28 years ago at the age of 56. He’s still living his life fairly normally, on Lupron and Bicalutamide, which he cycles on and off, due to anaemia.
That gave me tremendous hope, especially as medications have come on so much since then. Maybe others know of similar longevity with a metastatic at diagnosis situation?
I know it’s not necessarily usual… but it is possible. Fight on fellow warriors!
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Broccoli24
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Wonderful question Broccoli. And interesting story told by your doctor about the guy who survived now almost 30 years with metastatic prostate cancer. It's an anecdote. Is it a data point too?
The guy has cycled on and off Lupron and Bicalutamide - because of anemia. But cycling on and off is sort of BAT. Is it possible that this is why the guy never developed resistance? Because the evolution to resistance was disrupted by the cycling?
my DX was October 2018 … first recommendation of care was immediate entry into inpatient hospice. Said I had only a couple - few weeks to live. Here I am 6 years 3 month ( more or less ) later …STILL hanging in there on my initial Lupron xtandi treatment and still going. There are a “ lot “ of guys on here that have beat the 5 - 6 year projected limit commonly seen. You never really know when you will croak with all this stuff, not you or anyone else either. Men seem to be living longer nowadays, than the 2-3 years expectancy when I started and the 18 months - 24 months expectancy before that.
Everyone on this group ( mostly ) are croakers with terminal DXs. Stage4advanced , it’s what this group is all about and all of us know we are living on borrowed time. We get used to it and move on. My friend Mark lived 22 years with a horrible case of this disease.
I try to enjoy my good fortune , now, and not waste my “ good fortune” time left. Now is the time to go out for QOL with the family . The longer we last, the less this is likely to be possible.
IMHO, with what I’ve seen on this group, you are “ likely “ to have a few to many more good years at your disposal.
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What do you make of this?
seeking feedback on my case
UPDATE on my dad. A story of hope.❤️ #advancedPC
He lived a wonderful life
