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Steve Kramer

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Oct 17, 2012, 5:05:03 PM10/17/12
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Welcome Gentlemen!

Exactly 12 years ago today, October 17, 2000, I decided to stop in my
doctor's office and get that overdue PSA test he had been pestering me
about. He wasn't in, but the other doctor there was kind enough fit me in
for a DRE and the nurse took my blood. We all know what happened a couple
of days later - it's an experience we have each had at least once. I will
never forget the picture in my head. I'm looking out of my office door
toward a larger room that we called the squad room. I can still see the
wall (made of bare brick like you might find in a park lodge), the steel
gray door frame, and sun shining in the windows on the opposite side of the
room. "Steve? Your PSA was 16...." My first thought was of my father's
death 8 years before.

Those of you know that have been here awhile know that my doctor chose
surgery; then when that failed he chose radiation; and when that was
finished 1½ years later, I finally got my head out of my ass and joined this
group on July 7, 2002. Then there were guys like Burky the Warrior, Robert
Young, Larry Preuss, and others. Later came Steve Jordan, John Preston, and
more. They're all dead now and I owe them a debt that I can never repay.
Of course not all my mentors have died. The longest of them, Curtis Palmer,
is still kicking. And how can I ever remember all the Rons, Ralphs, Steves,
Daves, Alans, Mikes, and on and on and on and on? I thank you all for my
life as it exists; for surely if it were not for you, it would not.

So, on this date, I am again pestered by my mother who is so very worried
that I am going to assume room temperature before her. And, quite frankly,
I want to take a break from thinking about my cancer; or at least my
prognosis. What can I possibly say to her? "Mom, I should already be
pushing up daisies." "You should already be complaining to Rick Berger that
my grave is sinking in." But, my grave is empty. I'm still converting
oxygen and carbon monoxide. And, I don't I just don't know when or if I am
going to die. Really, until we all die, the assertion that we all will is
just a theory.

So, I wrote her this passage. I wanted her to understand that I appear to
have years to go before a sleep.

Then, I thought, I would like to proffer this to y'all and the great minds
on this newsgroup. So, please, take a look at it and see what you think. I
welcome a critique.


During the last 6½ years, my PSA has been <0.1 ng/l. By way of reminder,
that means less than 1/10th of a Nano gram of PSA in a liter of blood.
Extrapolated out, that is 1/10th of 1/millionth of a gram of PSA in 1000
grams of blood.

There has been no change in 6½ years. At <0.1, I am considered
“undetectable.” Since the prostate is not the only gland that produces PSA,
if they found any PSA at all (and they have not), anything less than .01 is
considered useless information. One or two years ago, the lab screwed up
and used a super-sensitive testing procedure. The result was <0.05. That’s
20 times less than 0.1 and they still could not find any.

At first the tests were quarterly, then every four months, then every eight.
I have probably been tested two dozen times in those 6½ years. I now get
6-month Lupron shots. So, I get tested every 6 months.

Someday, my PSA will be something like 0.1 (no “<” in front). I will ask
for quarterly PSAs at that point. The next one will be the same or higher.
If it goes up a third time, I will know my cancer is back. I will at that
point go to a medical oncologist. The Med Onc will probably wait until my
PSA surpasses 1.0 or 2.0. and then take off one of my meds, Casodex. My PSA
will drop back to <0.1. It might be another couple of years after that
before we have to consider another program. And, by then, it might not be
chemo.

The timeframe for any of this to happen will depend on my the time that it
takes for my PSA to double (PSAD) when it finally does come back. My PSAD
after surgery was 0.19 years (less than 3 months). After radiation it
slowed to 0.56 years (almost 7 months). After adding Lupron it slowed even
more to 1.4 years (16 months) before I had to go on ADT2 (Lupron and
Casodex).

We cannot predict what my future PSAD will be. And there are no studies
that I know of for men like me. There just aren’t many around that survived
on ADT as long as I have. And since this is an “old man’s” disease, those
who might have lived as long usually died of something else. I like to
think that my 1.4 years PSAD is what I’ll get in the end, but based on how
all these things work, I’m betting on that 0.56 PSAD that I had before I
started taking ADT.

So, for illustration purposes, let’s say my cancer is growing and my PSA is
creeping up toward “detectable” and I don’t know it. My future path (before
chemotherapy) might look like this.

Date PSA

2/1/2013 <0.1
8/1/2013 0.12
“Uh oh.”
11/1/2013 0.16 59 years old
2/1/2014 0.22
“Doc, it’s been a great run, but I’m going to see a Medical Oncologist”
5/1/2014 0.30
The Med Onc will recommend no action before 1.0 or 2.0
8/1/2014 0.43
11/1/2014 0.59 60
2/1/2015 0.92
5/1/2015 1.10
8/1/2015 1.36
“Well, why don’t we give it one more test?”
11/1/2015 1.92 61
“Okay, stop taking Casodex.”
2/1/2016 <0.1
5/1/2016 <0.1
8/1/2016 <0.1
11/1/2016 <0.1 62
2/1/2017 <0.1
5/1/2017 <0.1
8/1/2017 <0.1
11/1/2017 <0.1 63
2/16/2018 0.12
“Uh oh.”




PSA OCT 2000 @ 46
Biopsy NOV 2000 3+4=7, T2c
RRP DEC 2000 3+4=7), T3cN0M0, SVI, Neg margins
PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
EBRT MAY - JULY 2002 @ 47
PSA .34 .22 .15 .21 .32 PSAD 0.56 years
Lupron started JULY 2003 @ 48
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.40 years
Casodex added JUL 2006 @ 51
Last PSA <0.10 Next draw FEB 2013 @ 58
Illegitimati non carborundum




c palmer

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Oct 18, 2012, 3:49:57 AM10/18/12
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i joined this group on July 7, 2002. Then there were guys like Burky the
Warrior, Robert Young, Larry Preuss, and others. Later came Steve
Jordan, John Preston, and more. They're all dead now and I owe them a
debt that I can never repay. Of course not all my mentors have died. The
longest of them, Curtis Palmer, is still kicking. And how can I ever
remember all the Rons, Ralphs, Steves, Daves, Alans, Mikes, and on and
on and on and on? I thank you all for my life as it exists; for surely
if it were not for you, it would not.

===> congrats steve - your writings sure brought back powerful memories.
berky and robert young were probably the two most galant warriors that i
recall.... leading the way - to show that there was indeed hope beyond
the death sentence of hearing the news that you have prostate cancer.
back then, there wasn't that much information about pca and stories of
survival and robert young created phoenix 5, which is still in existence
today.

the web address is:

Phoenix5 Main Menu - men fighting prostate cancer

http://www.phoenix5.org/

speaking of still alive and kicking... i just had the appointment with
uro doctor yesterday. it's been 9.5 years since my surgery and my
latest psa is 0.015.

i'm really impressed with dr. palagiri. he is the only doctor that has
ever sat down with me and took his time to go over my Ct scan and
ultra-sounds on the screen and we would go through layer by layer of
what they were displaying. he didn't rush through as he explained not
only what was being shown, but analyzed what he was seeing. i saw the
noncancerous tumor on my kidney. the good news is that there were no
stones in the kidneys. that's always nice to know. the same was true
for my gall bladder - no stones. when we got to the ultra-sounds, he
showed me where all the cysts were and how large they were.
unfortunately, number of these cysts would fill up and over flow the
size of your hand. the good news is that they are noncancerous.

i'm planning on having surgery later this year to remove these cysts as
they are causing a lot of pain and discomfort. seems one thing is for
sure in life. if it's not one thing, it will probably be another thing
to occupy your mind on something.

again, congrats to you and all the other survivors out there. we may
be a d,s;; group but one thing is for sure. we are all true survivors
and warriors in every sense of the word.

and speaking of survivors and warriors., i just spoke with my step
uncle yesterday who has had pca for over 25 years now.
he said that the x rays and scans show that he has advanced pca mets on
his bones from his skull to his feet but he said that he's not in that
much pain. in fact, the only thing that he's getting in the lupron
shot. they even took him off the casodex. his psa was over 300 but
now is down to 14 on his last psa. he will be 88 on his next birthday.
he now uses a cane to steady himself to get around, but how many people
that age don't use some kind of walk aid?

other survivors that were regular contributors here in the olden days at
the newsgroup were mike h, and david s. (buttercup's dad).

i want to wish everyone low psa's for many, many years. life is good
and keep kicking that can down the road.

~ curtis palmer, ret. navy vietnam vet,

Colophony

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Oct 18, 2012, 8:40:57 AM10/18/12
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congratulations Steve, I have joined this group on 2006 soon after surgery
and , presently, I have no therapy only quarterly test and every 9/10 months
oncologist ck up.
Colophony

"Steve Kramer" <skr...@cinci.rr.com> ha scritto nel messaggio
news:k5n6i2$o8s$1...@dont-email.me...

Gourd Dancer

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Oct 18, 2012, 12:46:46 PM10/18/12
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Steve, you are truly an inspiration!

GD

"Steve Kramer" wrote in message news:k5n6i2$o8s$1...@dont-email.me...

ChuckP

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Oct 18, 2012, 12:58:24 PM10/18/12
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Nicely done Steve. Congratulations. Heres to many more years looking down
at the grass.

"Steve Kramer" <skr...@cinci.rr.com> wrote in message
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WhiteSoxFan

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Oct 26, 2012, 10:49:03 PM10/26/12
to Steve Kramer
Haven't looked at this wonderful group in many months. This is a nice post to come back to. Way to go Steve. In my mind you seem to be the face of this group and I thank you for your knowledge, honesty, kindness, camaraderie and courage. I too am extremely grateful for drawing undetectables since my radical prostatectomy in (I'm starting to forget it) 2005. I just want to remind us of a brief but oh so bright star on this stage. Hugh. Some called him Shuggie. May we all have dignified life after cancer.

Todd
<WhiteSoxFan>

jloomis

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Oct 27, 2012, 12:36:39 PM10/27/12
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Hello Steve,
We have been on this "Train Ride" for quite a while.
I am still a passenger along with you.
Congratulations, and lets sit back and enjoy the ride.

John Loomis
RRP 1999
Joined the group in Summer of 1999.
imagine that.......

john

"Steve Kramer" wrote in message news:k5n6i2$o8s$1...@dont-email.me...

Steve Kramer

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Oct 28, 2012, 3:34:35 PM10/28/12
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Yup, Dx in '05, surgery in '06 and six years of undetectable bliss. That's
fantastic - especially with a G8.

Hugh wasn't around long - not even a year - but he sure inspired us. Can
you believe he's been gone five years? And Steve Jordan over a year?



PSA OCT 2000 @ 46
Biopsy NOV 2000 3+4=7, T2c
RRP DEC 2000 3+4=7), T3cN0M0, SVI, Neg margins
PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
EBRT MAY - JULY 2002 @ 47
PSA .34 .22 .15 .21 .32 PSAD 0.56 years
Lupron started JULY 2003 @ 48
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.40 years
Casodex added JUL 2006 @ 51
Last PSA <0.10 Next draw FEB 2013 @ 58
Illegitimati non carborundum




"WhiteSoxFan" wrote in message
news:aa1130c3-e896-43b7...@googlegroups.com...

Steve Kramer

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Oct 28, 2012, 3:36:56 PM10/28/12
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Yeah, you got on the train a year before me and on this newsgroup three
years before.



PSA OCT 2000 @ 46
Biopsy NOV 2000 3+4=7, T2c
RRP DEC 2000 3+4=7), T3cN0M0, SVI, Neg margins
PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
EBRT MAY - JULY 2002 @ 47
PSA .34 .22 .15 .21 .32 PSAD 0.56 years
Lupron started JULY 2003 @ 48
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.40 years
Casodex added JUL 2006 @ 51
Last PSA <0.10 Next draw FEB 2013 @ 58
Illegitimati non carborundum




"jloomis" wrote in message news:k6h2j...@news6.newsguy.com...

Robert Caron

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Oct 31, 2012, 1:52:15 PM10/31/12
to Steve Kramer
Message has been deleted

Steve Kramer

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Nov 3, 2012, 4:42:40 PM11/3/12
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"Dale j." wrote in message
news:nospam-B04384....@free.teranews.com...


In a month I will visit my Dr. for perhaps the
last visit if everything is ok.


==> Wow! Wouldn't that be nice!

How is your wife doing with hers?

Steve Kramer

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Nov 3, 2012, 4:42:40 PM11/3/12
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"Dale j." wrote in message
news:nospam-B04384....@free.teranews.com...


In a month I will visit my Dr. for perhaps the
last visit if everything is ok.


==> Wow! Wouldn't that be nice!

How is your wife doing with hers?




Message has been deleted

Joe Price

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Nov 17, 2012, 5:41:24 PM11/17/12
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I haven't logged into this new group in YEARS. I used to be a regular here and certainly recall the guys you mention. I was unaware of the passing of some more of the members. Very sad.

I came to the news group originally because I thought I could offer some help to the newly diagnosed. I left when it seemed to me that news groups in general were becoming an anachronism and this one felt like it was becoming a forum for personal and political attacks and a victim of spam advertisements for all kinds of junk. I also felt that spending a lot of time on here was like dwelling on my cancer rather than getting out and living life.

I haven't even looked through the discussions here now since this was the first one I read and I felt compelled to add my little story.

I was diagnosed in 2001 at the age of 50. Positive DRE and my first ever PSA of 9.6. Laparoscopic radical prostatectomy with lousy pathology (positive seminal vesicles, positive margin, large volume of cancer..) Post RP PSA of 0.06. Very gradual rise in PSA to 0.3 or so. External beam radiation (38 sessions as I recall) did nothing and PSA continued rising to 0.56 or so. At that point I went on intermittent hormone deprivation therapy (one year on, one year off).

That therapy is holding it off quite nicely. When I go on it my PSA drops to undetectable and it stays there for the full year I am on and (so far) for the next 6 months then it goes to 0.15 or so after 9 months and 0.3 - 0.4 or so after 12 months off. Then I go back on and my pattern so far has been for it to drop immediately. I know the day will come when this therapy no longer works but in the mean time we are living life as if I did not have this disease.

We travel the world and spend our summers hiking the hills and mountains of western Canada.

Yeah, I have to live with the side-effects of the therapy but the point is that I am LIVING with this and have every intention to keep doing so.

I probably won't be back here any time soon because I don't want to live my life thinking about nothing but this stupid disease. I always say, "I have cancer, it doesn't have me."

All the best to all of you!

Joe Price

Steve Kramer

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Nov 17, 2012, 8:38:22 PM11/17/12
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Good to see you again, Joe. Good also to see the IADT pattern is still
holding.



PSA OCT 2000 @ 46
Biopsy NOV 2000 3+4=7, T2c
RRP DEC 2000 3+4=7), T3cN0M0, SVI, Neg margins
PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
EBRT MAY - JULY 2002 @ 47
PSA .34 .22 .15 .21 .32 PSAD 0.56 years
Lupron started JULY 2003 @ 48
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.40 years
Casodex added JUL 2006 @ 51
Last PSA <0.10 Next draw FEB 2013 @ 58
Illegitimati non carborundum




"Joe Price" wrote in message
news:6bf2a4ae-3923-411a...@googlegroups.com...

Dave P

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Nov 27, 2012, 10:31:46 AM11/27/12
to Steve Kramer
Steve,

You have already won. We are going on 2013 - so much time went by and your still <0.01 after having a pretty aggressive pathology report when this all started. I would be thinking if I really still had it at this point in time? Keep on doing what you have been doing. I dont see your psa coming back aggressively at this point if at all. You knocked it out with powerful blow to the head. It's confused, dazed and has lost its will to survive. You will continue on.

I too need will get a psa test soon after eight years <0.01

Dave P

Steve Kramer

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Nov 28, 2012, 9:02:06 AM11/28/12
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That is a refreshing way of looking at it. The bastard has certainly had to
revise his timeline a number of times.

Thanks, Dave.



PSA OCT 2000 @ 46
Biopsy NOV 2000 3+4=7, T2c
RRP DEC 2000 3+4=7), T3cN0M0, SVI, Neg margins
PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
EBRT MAY - JULY 2002 @ 47
PSA .34 .22 .15 .21 .32 PSAD 0.56 years
Lupron started JULY 2003 @ 48
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.40 years
Casodex added JUL 2006 @ 51
Last PSA <0.10 Next draw FEB 2013 @ 58
Illegitimati non carborundum




"Dave P" wrote in message
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