February 2, 2005
Entry #1 – The start of the end?
(This is just a portion of my first entry)
So here I am, a 42 year old, white male and tomorrow I am having a biopsy to determine if the problems I am experiencing are ultimately diagnosed as Prostate Cancer. Grim thought indeed.
…. I am fighting to remain positive. I pray a lot more than I ever have.
I worry most about my wife and young son and how they would go on?…. But I worry about them both emotionally and psychologically. I can’t imagine going on without her or him, it saddens me deeply. I pray a lot more than I ever have……
February 2, 2011
Entry #589 – It’s Blog-aversary VI
Now I find myself here, an outlier, way down the right side of the bell curve. Wondering, worrying, still trying to find fresh perspectives to share with you.
I try to keep the focus on what I am feeling and thinking versus what I am doing. For example; when I share that I had/have treatment I think readers appreciate it more when I share that it worries me, that I am hurting and what I’m thinking about. Anyone can post the mechanics of living with this or any disease, but I have always tried to reach deeper, beyond the scans, tests and needles. I really try to provide something unique that other survivors can use. Maybe they learn something and gain just a little insight in order to deal with what may lie ahead for them.
As I mentioned to a fellow PCa survivor earlier today, “It’s a badge that most of us would relinquish if we had the option. We don’t have that choice so some of us share it hoping to provide just a little light in an otherwise dark cancerous world.”
David – you have given us so much more than you will ever know. You’ve opened your heart and mind to all who have come here and extended your hand to those who have needed it. Strange thing about this blogging business…you have no idea how many you have enlightened, encouraged and made stronger in their journey by sharing yours. I just wanted to say Thank You so very much!
Your Florida Friends,
Susan.and Don
Dear David,
I am almost 1.5 years on the same journey as you are for more than 6 years already. My prognosis was actually somewhat worse than yours (higher starting_PSA and more bonemets). I am anxiously watching your experiences.
My PSA changes, both up and down have been faster than yours, so I decided I needed stabilization. I looked at dr. Leibowitz’s protocol (he runs the ‘Compassionate Oncology Medical Group’ in Los Angeles). He uses lowest doses of thalidomide and lenalidomide, 50 mg and 5 mg, resp., in order to turn off the blood supply to cancer cells. These drugs have been approved for another cancer (multiple myeloma). I bought them without prescription via the internet, because my oncologist hesitates to give it me because they have not been approved for PCa.
I was on an oestrogene (ethinyl estradiol), which in 1.5 months brought my PSA down from about 30 to 10 or 11. But then, about December 1, I guess, my PSA went up to 15.7 DEcember 17, so again a doubling time of less than a month (I had that also after the Casodex). From this day I started to use the thali- and lenali-domides and behold: for more than a month now my PSA is still 16 !. This exceeeds my expectations because I had only hoped for a change of doubling time to 2 or maybe 3 months.
I really wished you could try this as well. Better late then never.
Arno