Thursday, November 25, 2021
PSMA Scan done......Not great numbers.....In person visit with the PCP/Palliative....I Can't Speak Highly Enough of the Man
The specifics came back from the radiology report, etc. etc. Please keep in mind that when I was diagnosed in 2014 my PSA was 5.2 ng/ml. Throughout the last seven years it's never been more than about 40 give or take. The test from six weeks ago says it's 330 now. And that would support a lot of what's been going on with my body, my energy or, more accurately, my lack of energy. I've struggled with fatigue for so long now I just don't quite know what to do with it. My palliative guy gives me a stimulant which often helps but it has a short half life so I have to take it just right so that I'm on the downward end of the dose as I go to sleep. But here here's the real bottom line situation. The palliative guy feels like with four if not five areas of metastasis including both lungs, liver, lymph nodes, I am in an "unfortunate" situation. I may have to make some decisions real quick if I do anything at all and there aren't many options so I will be talking with the UCSF research guy next Tuesday and try to see if I can figure out a there's a reasonable path down the yellow brick road.
When I asked my Palliative guy how much time (Dr’s hate that question BTW) based on what he knows of my diagnosis and my history and most importantly what he knows about me do I likely have, his commentary was you can always buy time but realistically months….maybe a year. A friend just finished two years of hormone deprivation therapy. He was diagnosed in 2019 so I guess I finally reached that point my life where I am the old wiseguy...lol. Who knew?! But back to what he said, and that is, "it's poisonous". There's a formula palliatve docs use to estimate longevity and it’s an educated guess. It's called the Palliative Performance Scale I know my body pretty well and for going on six months or so now I can't get enough sleep. I'm just exhausted all the time. The palliative's scale suggests a year at best.
The PSMA treatment catches my eye because it doesn't require castrating a man, either literally or chemically. I want to know more about the side effects from the little nuclear bombs they send the cells. Yes folks, you heard it here! You heard it here first. This treatment makes sense and comes with few side effects; it's the first thing that caught my eye in seven years where I've thought now that probably makes sense. So we will see what the treatment the UCSF research doc has to offer. Immunotherapy is not off the table I don't think. But I can tell my body is degrading...which was bound to happen sooner or later with my diagnosis. So please feel free to send me your thoughts and prayers. For the readers that are also patients or loved ones of patients, please feel to reach out to me at anytime. Ever. Always. I know how frightening this is. But I also know that come March I'll have officially been dealing with it for eight years. They told me in 2014 if I did everything they said, I might make five.
I'm a lucky man. I'm a very lucky man and part of that is having friends and family that have been so supportive for so long. To borrow a wonderful line,"If I'd known I was gonna live this long I would've taken better care of myself!" You see a few years ago I didn't think I was going to live very long. But I did things my own hardheaded way, which I'm prone to do, and lo and behold, I'm still here. And most everything functions like it should. That big load of gratitude is owed to my friends and family because without them, I wouldn't have had the strength to stick it out this long. Much love and onward!
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