This is one of several essays from my private cancer journal. It is not intended as anything than a record of my states of mind as I struggled with the disease and the effects of the treatment.
Notes From That Wilder Shore:
Wow, try THIS!
[Posted to several prostate cancer lists on August 7, 2001.]
I was diagnosed on 11/23/99 with a PSA at 1000+, which was where the lab
stopped counting. So we don't know how high
it really was. Bone scans
showed heavy mets through pelvis, right femur, lower spine, ribs, shoulders
and I lost track of the rest. In other words, systemic, Stage M1c or "end
stage." (M1c is much more courteous.)
I went immediately on Zoladex + Nilandron (a nilutamide) and PSA dropped to
1.4 by end of Feb 2000. From there it slowly and erratically began to climb
as I went refractory. I stopped the Nilandron 7/00 with no effect on PSA.
As I posted last month:
6/7/01 - PSA = up to 88.6 - put on 50 mg Casodex
7/10/01 - PSA = down to 5.1
SO HERE'S THE LATEST NEWS
Told me today:
Test of 8/2/01: PSA = 0.9 - not a typo, but zero point nine.
As my oncologist said, there are men with RPs who wished they had such
numbers, let alone men diagnosed 21 months ago with a 1000+ PSA and Stage M1c.
SO WHAT'S THE SECRET? (HOW MUCH YOU GOT?)
I probably could go on the circuit now and peddle this the way others
peddle theirs but I'll decline. (laugh)
Am I on a special regimen? No. I eat what I want. I take no vitamins, no
supplements, no MGN3, soy, extra lycopene, flax oil, fish oil, motor oil or
ANY special diet that deletes or adds ANYthing to I want to eat. Hell, it
sometimes includes BBQ steaks. (Last night it was fried polish sausages in
fresh baked rolls covered in fried onions.) Plus I drink what I want (from
coffee to scotch and sometimes some wine), still smoke and don't subscribe
to a religion other than my own.
That's enough to delete this message in disgust.
I have been getting Quadramet injections every 3 months (part of a clinical
trial - http://www.phoenix5.org/clinical/clinicalmain.html), since January,
but the PSA has climbed since then.
BUT THERE IS ONE THING THAT I DO
Before anyone marks it up to a fluke or lab errors, I will say I do one
thing: I stopped worrying about the damned disease and I found things I
loved which includes Phoenix5 and trying to help people.
To rephrase what I said last month, I realized that my time was spent
thinking about ME and MY disease and thinking I would die. When I finally
dumped the last shreds of this self-absorption and put my attention on what
excited me the most, my life turned around and the medications bit. (I have
to credit Berky for helping me to find it.)
One doctor called the drop from 88 to 5 a "medical miracle" and my
oncologist agreed and THEN we got the drop to zero point 9. He is as elated
as I am.
WOULD I RECOMMEND THIS REGIMEN?
NO! I repeat, NO! I don't recommend smoking and drinking and eating what
you want for ANYone. I'll draw enough resentment for my lifestyle as it is.
I'm just relating what I do. since someone is bound to ask. (BTW, even my
But I DO recommend living a life without stress (ideally with someone who
brings life to your life) and putting more attention on LIFE and what you
can do tomorrow, rather than cancer and fearing the disease. I've said this
time and again, long before this latest PSA and it is at my Web site.
WOULD I FEEL DIFFERENT WITH A HIGHER PSA?
Sure, a low PSA is a joy but I have already run enough gauntlets and put
myself on the record at my site as to how I felt earlier. This is just a
bonus, like an unexpected (and very large) tax refund.
SO WHAT'S THE NEXT STEP?
My oncologist was inclined to stop the Zoladex, since I was going
refractory. He wanted to see what PSA does with just Casodex and if it
climbs, we could try Lupron since my system seems to respond to a different
drug. I agreed. (I was set for a Zoladex injection tomorrow.)
A couple of hours later, he called to say he had spoken with another
oncologist (mine is very new) who thought stopping Zoladex was not wise and
I should continue because it might be the combination. No, I said. I prefer
to go with your first inclination and that as a patient, I will decline. He
laughed and said, okay. see you in 3 months.
BTW, I'm getting treated at a VA hospital. So this isn't even HMO, let
BETTER THAN SUPERBOWL OVERTIME!
Zero point nine. I was ready for anything but that.
This is a game that I continue to enjoy playing.
What a hoot! (laugh)
Dx 11/23/99 PSA 1000+ Stage M1c
To help men and their companions with the effects of prostate cancer